Accepted Manuscript A systematic review of low back pain and sciatica patients’ expectations and experiences of health care Kevork Hopayian, Caitlin Notley PII:
S1529-9430(14)00226-5
DOI:
10.1016/j.spinee.2014.02.029
Reference:
SPINEE 55789
To appear in:
The Spine Journal
Received Date: 23 July 2013 Revised Date:
7 December 2013
Accepted Date: 12 February 2014
Please cite this article as: Hopayian K, Notley C, A systematic review of low back pain and sciatica patients’ expectations and experiences of health care, The Spine Journal (2014), doi: 10.1016/ j.spinee.2014.02.029. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT A systematic review of low back pain and sciatica patients’ expectations and
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experiences of health care.
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Dr Kevork Hopayian
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General practitioner, Leiston Surgery, Suffolk, and Honorary Senior Clinical Lecturer
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Norwich Medical School, University of East Anglia, Norfolk, England
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7 Dr Caitlin Notley
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Research Fellow, Norwich Medical School, University of East Anglia, Norfolk, England
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11 12 Corresponding address
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Dr Kevork Hopayian
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Seahills, Leiston Rd, Aldeburgh, Suffolk, England, IP15 5PL
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[email protected]
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A systematic review of low back pain and sciatica patients’ expectations and
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experiences of health care.
4 Background
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Previous systematic reviews of patients’ experience of health services have used
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mixed qualitative and quantitative studies. This review focused on qualitative studies,
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which are more suitable for capturing experience, using modern methods of synthesis
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of qualitative studies.
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10 Purpose
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To describe the experience of health care of low back pain and sciatica patients and
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the sources of satisfaction or dis-satisfaction with special reference to patients who do
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not receive a diagnosis.
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15 Study design
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A systematic review of qualitative studies
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Sample
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Primary qualitative studies identified from MEDLINE, EMBASE, CINAHL and
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Psychinfo databases.
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Outcome measures
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Conceptual themes of patients’ experiences.
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ACCEPTED MANUSCRIPT Method
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Data collection and analysis was through thematic content analysis. Two reviewers
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independently screened titles, collected and analysed data. The authors were in receipt
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of a Primary Care Research Bursary from NHS Suffolk and Norfolk Research
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Departments, a not-for-profit organization.
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6 Results
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Twenty eight articles met the inclusion criteria. Most studies were of high quality.
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Nine themes emerged: the process and content of care; relationships and interpersonal
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skills; personalised care; information; the outcome of care; the importance of a
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diagnosis; delegitimation; recognising the expert; and service matters. How care was
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given mattered greatly to patients, with importance given to receiving a perceived full
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assessment, consideration for the individual’s context, good relationships, empathy
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and the sharing of information. These aspects of care facilitated the acceptance by
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some of the limitations of health care and were spread across disciplines. Not having a
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diagnosis made coping more difficult for some but for others led to delegitimation, a
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feeling of not being believed. Service matters such as cost and waiting time received
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little mention.
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Conclusions
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While much research into the development of chronic LBP has focused on the patient,
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this review suggests that research into aspects of care also warrant research. The
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benefits of generic principles of care, such as personalisation and communication, are
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important to patients with LBP and sciatica so practitioners may help their patients by
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paying as much attention to them as to specific interventions. When neither cure nor a
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diagnostic label are forthcoming, generic skills remain important for patient
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satisfaction.
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Introduction
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5 Patient experience
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Previous systematic reviews of patients’ experience of health care for low back pain
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(LBP) have combined quantitative and qualitative studies1. A new review is needed
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for four reasons. First, more studies have appeared since earlier reviews1. Second,
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qualitative research is best suited for understanding experience so a review focused on
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qualitative studies is warranted2. Third, the methodology of synthesising qualitative
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studies has progressed. Fourth, the most recent review3 was directed at research
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methodology rather than practice. Thus an updated review of qualitative studies using
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modern methods is warranted.
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Theoretical Approach
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Grounded theory is the qualitative method most commonly used in medical research.
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Data items, such as each comment in an interview, are assigned brief descriptions,
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codes. Codes are compared to develop higher codes that link them. Previous data and
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codes may be re-analyzed and further data collected as analysis proceeds, a process
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termed iteration. Iteration continues until no new information emerges, the point of
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saturation when themes have been developed that capture the varying experiences of
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the subjects, creating a theoretical framework.
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The synthesis of qualitative research in medicine is less well established than the
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synthesis of quantitative research. While both aim to distil the best available evidence,
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there are important differences (table 1).
4 Sciatica patients
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It could be hypothesised that sciatica patients have different experiences of health
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care, particularly its psychosocial aspects, because sciatica is associated with
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definable pathologies, most commonly disc herniation and lumbar spinal stenosis,
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while most cases of LBP are labelled non-specific. However, some argue that a
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significant proportion of sciatica is not explained by those pathologies4 and others
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dispute that LBP is non-specific and argue that specific diagnoses can and should be
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made5.
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13 Aims
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The principal aims were to describe the experience of health care of LBP and sciatica
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patients and the sources of satisfaction or dis-satisfaction. A secondary aim was
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describe the experience and satisfaction of patients who do not receive a diagnosis.
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Method
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Search
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The MEDLINE, EMBASE, CINAHL and Psychinfo databases were searched for
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publications up to the period 22 May 2012. Both free text and thesaurus terms were
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used to maximise yield 6: [back pain.ti,ab OR sciatic*.ti,ab OR exp back pain OR exp
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sciatica] AND [expectation.ti,ab OR experience.ti,ab OR satisf*.ti,ab OR exp patient
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satisfaction OR exp client satisfaction OR qualitative.ti.ab OR exp qualitative
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research]
3 The grey literature was searched in The Health Management Information Consortium
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database and the System for Information on Grey Literature in Europe up to the
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period 22 May 2012 using the terms: back pain, sciatica, satisfaction, expectation,
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experience, and qualitative.
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Both reviewers independently screened titles and abstracts for eligibility. The references of all retrieved articles were screened. Disagreements were resolved by
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discussion.
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12 Eligibility
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Studies were included if:
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Patients had LBP or sciatica of any duration.
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Patients had received health care directed at diagnosis or management.
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Health care was delivered by a practitioner who could be a primary care physician,
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physiotherapist, chiropractor, osteopath, a secondary care specialist physician or
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surgeon.
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The study used a recognised qualitative methodology7 including: solely qualitative
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studies: mixed methods studies (patient experience reported both quantitatively and
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qualitatively); questionnaire surveys using open questions to collect and interpret data
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qualitatively; and qualitative studies that were parallel to or imbedded in trials or
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observational studies.
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Reported outcomes were patients’ experience of care provided by a practitioner or
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ACCEPTED MANUSCRIPT satisfaction with such care. Studies that reported patients’ expectations of care were
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included where they provided data relevant to experience or satisfaction.
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Reports were in English, Spanish, French or Greek.
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Studies were excluded if:
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They reported on rehabilitation programmes that had no element of diagnosis or
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management.
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They reported on self-care obtained from sources other than a health care practitioner,
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such as self-help associations.
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9 Method of synthesis
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Thematic content analysis8 is a method of synthesizing qualitative studies that is
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similar to grounded theory. It uses an iterative method of collating and analysing data
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to create themes. Like synthesis of quantitative studies. the search strategy, inclusion
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criteria and quality assessment are pre-specified.
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Quality assessment
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The 12-item EPPi Centre’s tool8 to score the methodological quality of qualitative
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studies 9 is suitable for all qualitative study designs. It has been widely employed10-18.
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Scores were assigned as 1 if a criterion was met, 0 if not met and 0.5 if partially met.
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Each study was assessed independently by the reviewers and their mean score taken
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as the final.
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Data collation and analysis
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Each article was analysed independently by two reviewers. Each portion of text
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pertinent to the research questions was assigned an initial code, close to the original
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ACCEPTED MANUSCRIPT thus avoiding premature interpretation. Codes were compared between the two
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reviewers and differences discussed. As coding progressed, initial codes were
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compared for connections to develop higher order codes. Iterative comparison
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between codes, earlier text and emerging high order codes continued to saturation.
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Data entry and analysis were performed with a customised database.
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6 Results
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Search
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Twenty eight studies out of 293 titles met the inclusion criteria (fig. 1) in a variety of
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settings (table 2). Eighteen studies were from the UK and four from the USA. Of 15
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non-English titles, only three were excluded for language reasons alone.
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12 Quality of studies
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Most studies were of high quality: twenty three scored 8 or more; median quality 9.6;
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and range 6.5–11. The intra-class correlation between reviewers was 0.86 indicating
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good agreement.
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Themes
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One hundred and ninety nine codes, fifty high order codes and nine themes emerged
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(fig. 2). Themes demonstrated both connectivity (overlap of high order codes) and
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contradictions. Contradictions were seen between some high order codes within each
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theme. Supporting quotes are identified by study number, S, and original page
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number, p.
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1 Process and content of care
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This theme was associated with the most codes and citations (table 3) and the largest
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number of links to other themes (fig. 2). Patients valued highly what they perceived to
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be a sufficient assessment.
4 “Many participants placed importance on a thorough assessment, feeling that it
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enabled their treatment [to] better relate to their needs”. S4p247
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Primary care might be a target for such criticism because it lacks specialist knowledge
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and has shorter consultations but such criticism was not universal.
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“They praised general practitioners who took careful histories, carried out detailed
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examinations and ordered diagnostic investigations, and they appreciated being
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offered explanations of the rationale behind such investigation”. S21p155
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Some studies reported that investigations, particularly radiography are perceived as
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crucial to a thorough assessment despite widely accepted guidelines that plain
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radiographs have limited value.
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“Radiography was sometimes considered more reliable than clinical investigation”
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S7p1360 and “…patients had been given a clear explanation, but doubted its
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validity… because they believed that it was based on inadequate investigations”.
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S21p157
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In contrast, other studies found that careful history taking and examination,
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particularly palpation of painful areas, may obviate the need for investigation.
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“Almost all (n 31) of the patients thought that the medical history taking and clinical
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examination had been thorough and satisfactory”. S9p257
4 Most studies reported patients’ disquiet at any hint that their pain was not physically
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based, something closely linked with delegitimation.
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“[patients] expressed their concerns/frustrations that their back problem during the
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consultation was labeled as ‘‘just’’ being psychological or psychosomatic”. S9 p258
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In contrast, some patients welcomed an exploration of the psychosocial aspects of
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their disease.
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“Through the interviews it occurred that the patients’ concept of psychosocial issues
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and that such issues had been discussed in most cases meant that the doctor had dealt
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with a possible correlation (in both directions) between daily life situation, including
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job, family, coping and quality of life aspects, role function and the patient’s LBP. In
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25 of 35 consultations the patients felt that this was not focused on at all or to a small
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extent and that they missed it”. S9p258
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Another contrast was between patients whose attitudes can be termed passive, in the
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sense of seeking an intervention from practitioners to cure them, and active, in the
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sense that they were ready to take steps to improve the situation (which might fall
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short of cure).
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“Four patients said during the interview that they expected passive external
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treatment” and “Five patients were convinced that surgery was what they needed in
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order to get better”. S9p258
4 In contrast:
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“Some believed that patients had to do their bit in the treatment process for it to
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work, otherwise the intervention is wasted” S14p131
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The interplay between patient expectations and the content of care influenced
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satisfaction. Expectations frequently meant lack of faith in medication.
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“There was also a sense that drugs, which were considered to be the principal
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solution available from GPs, were inappropriate for back pain”. S26p752
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Expectations were not confined to drugs but extended to specific manual therapies as
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well.
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“Seven took into account the actual treatment experience itself (i.e., the approach to
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treatment, technique used)”. S8p504
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Several of the findings linked with the theme of personalized care: the desire to be
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treated as an individual with individual needs and problems requiring individual
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solutions.
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2 Personalized care
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Closely linked to the process of care, patients wanted involvement in decisions:
3 “All participants expressed the need for mutual enquiry, problem-solving, negotiation
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and renegotiation between care-provider and care-seeker to establish mutual
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therapeutic goals”. S23p273
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Personalized care encompasses many things: taking account of patient preferences,
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tailoring treatments for the individual and understanding the patient’s specific context.
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A study, conducted in the outpatient departments of a variety of disciplines, of what
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constitutes a good back consultation discovered that:
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“A constant finding (observation and interviews) from the discussions/negotiations
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between the physician and the patient about treatment options was the importance of
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meeting the patient’s expectations and preferences (i.e. being patient-centred) in the
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decision-making process”. S9p258
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This finding recurred in several studies. Patients wanted their circumstances assessed
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believing that the treatment ought to be customized for them as an individual.
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“…participants wanted care-providers to develop a comprehensive picture of the
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individual’s values, preferences and lifestyle in order to develop individualized
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programmes”. S23p273
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Practitioners with good skills who appeared to understand the individual’s context
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were valued in several studies.
2 “Patients described how it was important to know that the GP understood them as an
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individual and the impact the pain was having on their lives”. S25p78
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3 Patient-practitioner relationship and Interpersonal skills
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The practitioner’s interpersonal skills and the relationship with the patient were rated
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as important across several disciplines and settings. A study of physiotherapy patients
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reported:
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“They particularly valued behaviours such as listening and responding to their
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questions, consulting with them about the effectiveness of the therapy and relating the
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intervention to their individual self help needs”. S24p183
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Empathy and understanding were essential components of practitioners’ inter-action:
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“Appreciation by clinicians of how sciatica affected people’s lives and self-image was
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mentioned as key to an effective therapeutic relationship”. S25p78
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Showing an interest in patients and treating them as individuals helped the
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development of good relationships which in turn improved patients’ co-operation in
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self-care.
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“Consideration of life circumstances and preferences was important to all
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participants in developing therapeutic partnerships and optimizing exercise
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outcomes”. S23p273
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Good communication skills and the sharing of information may partly explain why
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some patients come to accept the rationale of therapy while others do not.
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“The importance of clear information and explanation emerged from many of the
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accounts, and they felt that this would help them cope with the diagnosis and
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prognosis”. S15p132
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9 4 Outcome of care
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Patients with acute pain start with notions of cure but when pain becomes chronic
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expectations may shift to achieving strategies for adaptation.
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“Although many patients had come to accept that the problem was not curable they
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frequently expressed satisfaction with strategies for self-help that they had learnt
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through physiotherapy”. S15 p15
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Some adapted to the situation and were satisfied with the care they received,
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accepting that information and coping strategies was all that could be offered.
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“…many expressed overall satisfaction with care, suggesting that this did not relate
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simply to the outcome of pain” S15p15 and “Although many patients had come to
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accept that the problem was not curable they frequently expressed satisfaction with
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strategies for self-help that they had learnt through physiotherapy”. S15p15
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Yet in contrast, some patients with chronic LBP never relinquished the goal of
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achieving cure and translated failure of treatment to lack of practitioners’
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commitment.
4 “What is evident from these narratives is that despite their continuing frustration and
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anger [with services] participants clearly felt that a cure was not only possible but
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should be readily available”. S3p34
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In chronic pain. other outcomes become important, such as functional ability, quality of life and reassurance.
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“Approximately half of the respondents in this study rated a change in their ability to
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perform certain activities to be a factor they considered when evaluating their overall
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improvement, and just over half considered quality of life to be one of the most
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important outcomes to them”. S8p506.
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5 Recognising the expert
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Patients have ideas about which discipline, if any, is the expert in their condition.
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Some patients thought that GPs lack necessary knowledge and skills compared to
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other practitioners.
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“Patients described how GPs lacked specialist knowledge that would allow them to
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effectively treat back pain…”. S27p79.
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However, this was not a universal finding. Patients with recurrent low back pain were
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reported to be satisfied with GP care.
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“…[patients] believed that it was appropriate to visit their general practitioner
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routinely for episodes of low back pain”. S21p257
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The importance of interpersonal skills and empathy arose again, affecting the
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perception of who is the expert.
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“Non-orthodox and folk healers are often perceived as being more empathetic, more knowledgeable, having better diagnostic skills and providing more effective
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therapies” S2 p983
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However, another study found that patients attended a non-orthodox practitioner only
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because conventional services had been exhausted.
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“Most of these patients [who tried CAM] …as a desperate measure when their pain
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became intolerable and an immediate general practitioner consultation was
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unavailable or likely to be ineffective”. S21p280
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Recognition of expertise was tied in with expectations of the content of care.
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Medication was seen by many as ineffective compared to other forms of treatment:
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“…patients saw medication as just treating symptoms rather than ‘dealing with the
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actual problem’”. S25p753
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6 Necessity of diagnosis
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Even when no cure is possible, and perhaps even more so, having a diagnosis was
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important to many patients. A study of chiropractic patients noted:
4 “A main and general finding of this study was the importance to the patient of
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receiving an understandable explanation of the back pain or, if possible, getting a
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diagnosis”. S8p257
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Receiving a diagnosis had other benefits, such as reassurance that the cause is not sinister:
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“An explanation of the problem provided reassurance to some and also encouraged
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self-management:.” S15p13
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A diagnosis did not always necessitate imaging. An examination perceived as
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adequate may explain why clinical diagnosis alone satisfies some patients.
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“These alternative healers frequently discern the exact site of the pain and often
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touch it, something many conventional practitioners fail to do”. S2p983
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In contrast, conventional practitioners sharing the diagnostic uncertainty inherent in
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medicine may fail to reassure.
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“There is frustration with the uncertainty present in the usual diagnostic
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categorization”. S2p983
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A powerful driver for wanting a precise diagnosis was to have proof that there was
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something truly wrong, to legitimate the pain.
4 7 Delegitimation
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A theme that recurred through many of the studies of chronic LBP was the need for
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legitimation: the feeling of “being seen, heard and believed, i.e. being taken
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seriously”(S9). The opposite, delegitimation, added further pain to sufferers.
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“An element of others questioning the authenticity of their LBP was articulated in the
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distress and frustration experienced in interactions with medical professionals”.
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S27p980
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Why this happens in back pain and sciatica may be linked to the absence of external
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signs of disease.
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“A theme across the narratives was that other people failed to appreciate their
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suffering and because they appeared outwardly normal, did not take their pain (i.e.
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them) seriously”. S27p980
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The link between legitimation and a physical diagnosis may explain why imaging was
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sought by some patients.
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“One method of legitimization is through attempts to make ‘visible’ the invisible by
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seeking diagnostic validation of the cause of the pain”. S3p641
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8 Information
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Several studies found a desire for information and dis-satisfaction when it was
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inadequate. Information needs were summarised as:
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“… four key areas in which patients generally appreciated information giving: the
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problem itself, the patients’ role in back care, the treatment process, the prognosis of
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the condition”. S15p13
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These key areas recurred across studies. The quality of communication was as
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important as the information.
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“…good communication involved: taking time over explanations; using appropriate
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terminology: listening, understanding and getting to know the patient; and
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encouraging the patient’s participation in the communication process”. S5p247
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16 9 Service matters
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Aspects of services that patients found unsatisfactory were access, appointments and
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cost. In socialized services these included: the perception that generalists are a barrier
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to specialist services, the length of waiting times and difficulty of access to
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physiotherapists. In the private sector, cost was an important matter. There was little
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linkage between service matters and the other themes.
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Subgroup analysis: Sciatica Patients
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ACCEPTED MANUSCRIPT Analysis of the three studies that reported sciatica patients produced 30 high order
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codes which mapped to the same nine themes from the overall analysis. These
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included such experiences as wanting hospital specialists to consider their views,
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taking their perspective and preferences into account, the importance of being
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believed and the importance of empathy.
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6 Sensitivity analysis
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Two sensitivity analyses were performed. Removing all studies of lower quality
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(score less than the median) and removing all studies from Great Britain did not alter the themes or high order codes.
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Discussion
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Limitations and strengths
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This review’s main limitation is the concentration of studies in English speaking
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countries, mostly Great Britain. This might reduce transferability to other countries.
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However, the sensitivity analysis excluding the British studies did not alter the results.
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Some argue against synthesising qualitative data because it removes the data from
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their context, which is crucial to qualitative research. In contrast, we see
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comprehensive synthesis as a strength. Some themes cut across the boundaries of
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primary/secondary care and across all disciplines. The ubiquity of the findings
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increases their transferability. We also found contrasting themes between studies
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which revealed a richer description of the spectrum of patient experiences than any
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individual study achieved. The main strength in relation to previous reviews is its
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systematic methods of qualitative research synthesis with rigorous data collection,
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quality appraisal and analysis8. A further strength was the high quality of the studies.
3 Implications for practice
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A mixed picture of patients’ experiences emerges from these studies. It is a truism
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that patents’ expectation of care is cure. However, when the prospect of cure fades,
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they adapt broadly in one of two ways. Some come to accept that the limits of
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intervention have been reached and that they must take responsibility for further care.
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Others continue to believe that cure is possible and that practitioners have failed.
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Personal psychological features have been proposed as explanations for these
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contrasting responses 19 20 21. The principal finding of this review is that aspects of
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health care may also play a part. The extent to which patients perceived care to be
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good influenced both their degree of satisfaction and their willingness to accept
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professionals’ advice. The mixed picture was mirrored in the process and content of
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care. While some patients welcomed questions on how psychosocial circumstances
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related to pain, others interpreted them as doubting a physical basis for their pain. It
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cannot be known from these studies whether it was the questions themselves or the
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manner of asking that made the difference. The findings on communication skills
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suggest the latter is important.
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The importance of receiving a full assessment was shown by the contrast between
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satisfied patients who perceived having a good clinical assessment and dis-satisfied
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patients who perceived an inadequate one. Satisfaction was reported with all types of
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practitioner but the studies of patients of alternative practitioners were illuminating.
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These patients valued not only the examination, including touching the site of pain,
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ACCEPTED MANUSCRIPT but also appreciated receiving a diagnosis. In contrast, patients of conventional
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practitioners were frustrated by the ruling out process of diagnosis, a frustration that
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could be compounded when no diagnosis is forthcoming, a common situation for 90%
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of LBP patients22. For some, a lack of a diagnosis led to a state in which they felt their
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suffering was denied. This state of delegitimation has been well described in many
6
other chronic painful conditions23 and where pathology is unproven 24
RI PT
1
7
Thus having a diagnosis can be of supreme importance to patients who do not
9
recover. Some form of explanation for pain may be better than none whilst attempts to describe subgroups of patients who currently have no diagnosis25 26 continue.
M AN U
10
SC
8
11
Practitioners can help such patients by giving them information about the condition,
13
what they could do to help themselves and their prognosis. This finding accords with
14
the folk model of illness in which patients seek answers to the questions: what has
15
happened, why, what will happen and what should I do?27 and confirms the
16
conclusions of the review by Verbeek et al1. Our review additionally shows the
17
importance of personalised care. While all practitioners aspire to provide it, this
18
review suggests that attention is not always paid to recognising the specific
19
circumstances of the individuals and involving them in decisions. Personalised care
20
was closely linked with the interpersonal skills of the practitioner. Good
21
communication skills, empathy and a close relationship were greatly valued and
22
reported to make patients feel involved in decisions and to improve adherence. This is
23
concord with studies of physician consultation styles in other conditions, where it has
24
been shown to improve patient outcomes28 29. One reason patients chose alternative
25
practitioners was that they found them more empathic, a finding not confined to LBP
AC C
EP
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12
21
ACCEPTED MANUSCRIPT and sciatica 30 31. Taken together, it seems that patients who do not recover want not
2
only an explanation for their pain and advice on what to do but to be given these with
3
empathy and consideration of their individual circumstances. These suggestions apply
4
also to sciatica patients since the hypothesis that they have different experiences was
5
not supported by the sub-group analysis.
RI PT
1
6 Implications for research
8
Patient satisfaction was found for each discipline but this could be due to selection
9
bias because most studies drew samples from attendees to a department. Nevertheless,
SC
7
no discipline was without the confidence of some patients, including non-specialist
11
general practitioners, so that future research should be directed at clarifying the
12
generic aspects of good care, namely forming relationships, personalising care, and
13
information sharing. Research into the impact of the process and content of care in
14
general, rather than the characteristics of patients, may offer new insights into the
15
“revolving door” 32 of repeated consultations and investigations in the significant
16
minority of LBP patients with chronic pain or disability 33.
17
EP
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10
Contributions
19
KH conceived and designed the study. KH and CN collected and analysed the data.
20
KH wrote the drafts. KH and CN edited the final report. KH was in receipt of a
21
Primary Care Research Bursary from NHS Suffolk and Norfolk Research
22
Departments.
AC C
18
23 24
References
25
22
ACCEPTED MANUSCRIPT 1. Verbeek J, Sengers MJ, Riemens L, Haafkens J. Patient expectations of treatment
2
for back pain: a systematic review of qualitative and quantitative studies. Spine.
3
2004;29(20):2309-2318.
4
2. Georgy EE, Carr EC, Breen AC. Back pain management in primary care: patients'
5
and doctors' expectations. Quality in primary care. 2009;17(6):405-413.
6
3. Shaw RL, Booth A, Alex J Sutton AJ, Miller T, Smith JA, Young B et al. Finding
7
qualitative research: an evaluation of search strategies. BMC Medical Research
8
Methodology. 2004;4(5).
9
4. Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. Thousand
SC
RI PT
1
Oaks: Sage Publications; 2000
11
5. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in
12
systematic reviews. BMC Med Res Methodol. 2008;8(45).
13
6. Thomas J, Sutcliffe K, Harden A, Oakley A, Oliver S, Rees R et al. Children and
14
Healthy Eating: A systematic review of barriers and facilitators.
15
http://eppi.ioe.ac.uk/cms/Default.aspx?tabid=246. 2003. Last accessed 10 Sept 2011.
16
7. Bridges J, Flatley M, Meyer J. Older people's and relatives' experiences in acute
17
care settings: systematic review and synthesis of qualitative studies. Int J Nurs Stud.
18
2010;47(1):89-107.
19
8. Harden A, Brunton G, Fletcher A, Oakley A. Teenage pregnancy and social
20
disadvantage: systematic review integrating controlled trials and qualitative studies.
21
BMJ. 2009;339(b4254).
22
9. Lakshman R, Ogilvie D, Ong KK. Mothers' experiences of bottle-feeding: a
23
systematic review of qualitative and quantitative studies. Arch Dis Child.
24
2009;94(8):596-601.
AC C
EP
TE D
M AN U
10
23
ACCEPTED MANUSCRIPT 10. Lewis RA, Neal RD, Hendry M, France B, Williams NH, Russell D et al. Patients'
2
and healthcare professionals' views of cancer follow-up: systematic review. Br J Gen
3
Pract. 2009;59(564):e248-59.
4
11. Lipworth WL, Davey HM, Carter SM, Hooker C, Hu W. Beliefs and beyond:
5
what can we learn from qualitative studies of lay people's understandings of cancer
6
risk? Health Expect. 2010;13(2):113-124.
7
12. Mahant S, Jovcevska V, Cohen E. Decision-making around gastrostomy-feeding
8
in children with neurologic disabilities. Pediatrics. 2011;127(6):e1471-81.
9
13. Morton RL, Tong A, Howard K, Snelling P, Webster AC. The views of patients
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RI PT
1
and carers in treatment decision making for chronic kidney disease: systematic review
11
and thematic synthesis of qualitative studies. BMJ. 2010;340(c112).
12
14. Pocock M, Trivedi D, Wills W, Bunn F, Magnusson J. Parental perceptions
13
regarding healthy behaviours for preventing overweight and obesity in young
14
children: a systematic review of qualitative studies. Obes Rev. 2010;11(5):338-353.
15
15. Rosewilliam S, Roskell CA, Pandyan AD. A systematic review and synthesis of
16
the quantitative and qualitative evidence behind patient-centred goal setting in stroke
17
rehabilitation. Clin Rehabil. 2011;25(6):501-514.
18
16. Gatchel RJ, Polatin PB, Mayer TG. The dominant role of psychosocial risk factors
19
in the development of chronic low back pain disability. Spine (Phila Pa 1976).
20
1995;20(24):2702-2709.
21
17. Linton SJ. A review of psychological risk factors in back and neck pain. Spine
22
(Phila Pa 1976). 2000;25(9):1148-1156.
23
18. Pincus T, Burton AK, Vogel S, Field AP. A systematic review of psychological
24
factors as predictors of chronicity/disability in prospective cohorts of low back pain.
25
Spine (Phila Pa 1976). 2002;27(5):E109-20.
AC C
EP
TE D
M AN U
10
24
ACCEPTED MANUSCRIPT 19. Koes BW, van Tulder MW, Thomas S. Diagnosis and treatment of low back pain.
2
BMJ. 2006;332(7555):1430-1434.
3
20. Kenny DT. Constructions of chronic pain in doctor-patient relationships: bridging
4
the communication chasm. Patient Educ Couns. 2004;52(3):297-305.
5
21. Deale A, S W. Patients’ perceptions of medical care in chronic fatigue syndrome.
6
Social Science and Medicine. 2001;52(12):1859-1864.
7
22. Brennan GP, Fritz JM, Hunter SJ, Thackeray A, Delitto A, Erhard RE. Identifying
8
Subgroups of Patients With Acute/Subacute, "Nonspecific"‚ Low Back Pain: Results
9
of a Randomized Clinical Trial. Spine. 2006;31(6):623-631.
SC
RI PT
1
23. Hopayian K, Song F, Riera R, Sambandan S. The clinical features of the
11
piriformis syndrome: a systematic review. Eur Spine J. 2010;19(12):2095-2109.
12
24. Helman CG. Disease versus illness in general practice. J R Coll Gen Pract.
13
1981;31(230):548-552.
14
25. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the
15
primary care office: a systematic review. J Am Board Fam Pract. 2002;15(1):25-38.
16
26. Zolnierek KB, Dimatteo MR. Physician communication and patient adherence to
17
treatment: a meta-analysis. Med Care. 2009;47(8):826-834.
18
27. Mermod J, Fischer L, Staub L, Busato A. Patient satisfaction of primary care for
19
musculoskeletal diseases: a comparison between Neural Therapy and conventional
20
medicine. BMC Complement Altern Med. 2008;8(33).
21
28. Michlig M, Ausfeld-Hafter B, Busato A. Patient satisfaction with primary care: a
22
comparison between conventional care and traditional Chinese medicine. Complement
23
Ther Med. 2008;16(6):350-358.
AC C
EP
TE D
M AN U
10
25
ACCEPTED MANUSCRIPT 29. Campbell C, Guy A. 'Why can't they do anything for a simple back problem?' A
2
qualitative examination of expectations for low back pain treatment and outcome.
3
Journal of Health Psychology. 2007;12(4):641-653.
4
30. Henschke N, Maher CG, Refshauge KM, Herbert RD, Cumming RG, Bleasel J et
5
al. Prognosis in patients with recent onset low back pain in Australian primary care:
6
inception cohort study. BMJ. 2008;337(a171).
7
31. Bath B, Janzen B. Patient and referring health care provider satisfaction with a
8
physiotherapy spinal triage assessment service. Journal of Multidisciplinary
9
Healthcare. 2012;5(1-15).
SC
RI PT
1
32. Borkan J, Reis S, Hermoni D, Biderman A. Talking about the pain: a patient-
11
centered study of low back pain in primary care. Soc Sci Med. 1995;40(7):977-988.
12
33. Campbell WW, Landau ME. Controversial entrapment neuropathies. Neurosurg
13
Clin N Am. 2008;19(4):597-608, vi-vii.
14
34. Chew CA, May CR. The benefits of back pain. Fam Pract. 1997;14(6):461-465.
15
35. Cooper K, Smith BH, Hancock E. Patient-centredness in physiotherapy from the
16
perspective of the chronic low back pain patient. Physiotherapy. 2008;94(3):244-253.
17
36. Dean SG, Smith JA, Payne S, Weinman J. Managing time: an interpretative
18
phenomenological analysis of patients' and physiotherapists' perceptions of adherence
19
to therapeutic exercise for low back pain. Disability & Rehabilitation.
20
2005;27(11):625-637.
21
37. Espeland A, Baerheim A, Albrektsen G, Korsbrekke K, Larsen JL. Patients' views
22
on importance and usefulness of plain radiography for low back pain. Spine.
23
2001;26(12):1356-1363.
24
38. Evans RL, Maiers MJ, Bronfort G. What do patients think? Results of a mixed
25
methods pilot study assessing sciatica patients' interpretations of satisfaction and
AC C
EP
TE D
M AN U
10
26
ACCEPTED MANUSCRIPT improvement. Journal of Manipulative and Physiological Therapeutics.
2
2003;26(8):502-509.
3
39. Laerum E, Indahl A, Skouen JS. What is "the good back-consultation"? A
4
combined qualitative and quantitative study of chronic low back pain patients'
5
interaction with and perceptions of consultations with specialists. Journal of
6
Rehabilitation Medicine. 2006;38(4):255-263.
7
40. Layzell M. Back pain management: a patient satisfaction study of services. British
8
Journal of Nursing. 2001;10(12):800-807.
9
41. Liddle SD, Baxter GD, Gracey JH. Chronic low back pain: Patients' experiences,
SC
RI PT
1
opinions and expectations for clinical management. Disability and Rehabilitation.
11
2007;29(24):1899-1909.
12
42. Lillrank A. Back pain and the resolution of diagnostic uncertainty in illness
13
narratives. Social Science & Medicine. 2003;57(6):1045-1054.
14
43. May CR, Rose MJ, Johnstone FC. Dealing with doubt. How patients account for
15
non-specific chronic low back pain. Journal of Psychosomatic Research.
16
2000;49(4):223-225.
17
44. May S. Patients' attitudes and beliefs about back pain and its management after
18
physiotherapy for low back pain. Physiotherapy Research International.
19
2007;12(3):126-136.
20
45. May SJ. Patient satisfaction with management of back pain. Physiotherapy.
21
2001;87(1):4-21.
22
46. McIntosh A, Shaw CFM. Barriers to patient information provision in primary
23
care: patients' and general practitioners' experiences and expectations of information
24
for low back pain. Health Expectations. 2003;6(1):19-30.
AC C
EP
TE D
M AN U
10
27
ACCEPTED MANUSCRIPT 47. McPhillips-Tangum CA, Cherkin DC, Rhodes LA, Markham C. Reasons for
2
repeated medical visits among patients with chronic back pain. J Gen Intern Med.
3
1998;13(5):289-295.
4
48. Ong BN, Konstantinou K, Corbett M, Hay E. Patients' own accounts of sciatica: a
5
qualitative study. Spine (Phila Pa 1976). 2011;36(15):1251-1256.
6
49. Rhodes LA, McPhillips-Tangum CA, Markham C, Klenk R. The power of the
7
visible: the meaning of diagnostic tests in chronic back pain. Soc Sci Med.
8
1999;48(9):1189-1203.
9
50. Schers H, Wensing M, Huijsmans Z, van M, Grol R. Implementation barriers for
SC
RI PT
1
general practice guidelines on low back pain a qualitative study. Spine.
11
2001;26(15):E348-353.
12
51. Skelton AM, Murphy EA, Murphy RJL, O'Dowd TC. Patient education for low
13
back pain in general practice. Patient Education and Counseling. 1995;25(3):329-334.
14
52. Skelton AM, Murphy EA, Murphy RJ, O'Dowd TC. Patients' views of low back
15
pain and its management in general practice. Br J Gen Pract. 1996;46(404):153-156.
16
53. Sokunbi O, Cross V, Watt P, Moore A. Experiences of individuals with chronic
17
low back pain during and after their participation in a spinal stabilisation exercise
18
programme -- a pilot qualitative study. Manual Therapy. 2010;15(2):179-185.
19
54. Toye F, Barker K. Persistent non-specific low back pain and patients' experience
20
of general practice: a qualitative study. Primary Health Care Research &
21
Development. 2012;13(1):72-84.
22
55. Underwood MR, Harding G, Moffett JK. Patient perceptions of physical therapy
23
within a trial for back pain treatments (UK BEAM) [ISRCTN32683578].
24
Rheumatology. 2006;45(6):751-756.
AC C
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TE D
M AN U
10
28
ACCEPTED MANUSCRIPT 56. Vroman K, Warner R, Chamberlain K. Now let me tell you in my own words:
2
narratives of acute and chronic low back pain. Disability & Rehabilitation.
3
2009;31(12):976-988.
4
57. Walker J, Holloway I, Sofaer B. In the system: the lived experience of chronic
5
back pain from the perspectives of those seeking help from pain clinics. Pain.
6
1999;80(3):621-628.
RI PT
1
7
SC
8 9
M AN U
10
1. Verbeek J, Sengers MJ, Riemens L, Haafkens J. Patient expectations of treatment
12
for back pain: a systematic review of qualitative and quantitative studies. Spine.
13
2004;29(20):2309-2318.
14
2. Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of
15
Interventions Version 5.1.0. http://www.cochrane-handbook.org/. 2011. Last
16
accessed 10 Sept 2011.
17
3. Georgy EE, Carr EC, Breen AC. Back pain management in primary care: patients'
18
and doctors' expectations. Qual Prim Care. 2009;17(6):405-413.
19
4. Filler AG, Haynes J, Jordan SE, Prager J, Villablanca JP, Farahani K et al. Sciatica
20
of nondisc origin and piriformis syndrome: diagnosis by magnetic resonance
21
neurography and interventional magnetic resonance imaging with outcome study of
22
resulting treatment. J Neurosurg Spine. 2005;2(99-115.
23
5. Abraham I, Killackey-Jones B. Lack of evidence-based research for idiopathic low
24
back pain: The importance of a specific diagnosis. Arch Int Med. 2002;162(13):1442-
25
1444.
AC C
EP
TE D
11
29
ACCEPTED MANUSCRIPT 6. Shaw RL, Booth A, Alex J Sutton AJ, Miller T, Smith JA, Young B et
2
al. Finding qualitative research: an evaluation of search strategies. BMC
3
Med Res Methodol. 2004;4(5.
4
7. Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. Thousand
5
Oaks: Sage Publications; 2000
6
8. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in
7
systematic reviews. BMC Med Res Methodol. 2008;8(45.
8
9. Thomas J, Sutcliffe K, Harden A, Oakley A, Oliver S, Rees R et al. Children and Healthy
9
Eating: A systematic review of barriers and facilitators.
M AN U
SC
RI PT
1
http://eppi.ioe.ac.uk/cms/Default.aspx?tabid=246. 2003. Last accessed 10 Sept 2011.
11
10. Bridges J, Flatley M, Meyer J. Older people's and relatives' experiences in acute
12
care settings: systematic review and synthesis of qualitative studies. Int J Nurs Stud.
13
2010;47(1):89-107.
14
11. Harden A, Brunton G, Fletcher A, Oakley A. Teenage pregnancy and social
15
disadvantage: systematic review integrating controlled trials and qualitative studies.
16
BMJ. 2009;339(b4254.
17
12. Lakshman R, Ogilvie D, Ong KK. Mothers' experiences of bottle-feeding: a
18
systematic review of qualitative and quantitative studies. Arch Dis Child.
19
2009;94(8):596-601.
20
13. Lewis RA, Neal RD, Hendry M, France B, Williams NH, Russell D et al. Patients'
21
and healthcare professionals' views of cancer follow-up: systematic review. Br J Gen
22
Pract. 2009;59(564):e248-59.
23
14. Lipworth WL, Davey HM, Carter SM, Hooker C, Hu W. Beliefs and beyond:
24
what can we learn from qualitative studies of lay people's understandings of cancer
25
risk? Health Expect. 2010;13(2):113-124.
AC C
EP
TE D
10
30
ACCEPTED MANUSCRIPT 15. Mahant S, Jovcevska V, Cohen E. Decision-making around gastrostomy-feeding
2
in children with neurologic disabilities. Pediatrics. 2011;127(6):e1471-81.
3
16. Morton RL, Tong A, Howard K, Snelling P, Webster AC. The views of patients
4
and carers in treatment decision making for chronic kidney disease: systematic review
5
and thematic synthesis of qualitative studies. BMJ. 2010;340(c112.
6
17. Pocock M, Trivedi D, Wills W, Bunn F, Magnusson J. Parental perceptions
7
regarding healthy behaviours for preventing overweight and obesity in young
8
children: a systematic review of qualitative studies. Obes Rev. 2010;11(5):338-353.
9
18. Rosewilliam S, Roskell CA, Pandyan AD. A systematic review and synthesis of
10
the quantitative and qualitative evidence behind patient-centred goal setting in stroke
11
rehabilitation. Clin Rehabil. 2011;25(6):501-514.
12
19. Gatchel RJ, Polatin PB, Mayer TG. The dominant role of psychosocial risk factors
13
in the development of chronic low back pain disability. Spine (Phila Pa 1976).
14
1995;20(24):2702-2709.
15
20. Linton SJ. A review of psychological risk factors in back and neck pain. Spine
16
(Phila Pa 1976). 2000;25(9):1148-1156.
17
21. Pincus T, Burton AK, Vogel S, Field AP. A systematic review of psychological
18
factors as predictors of chronicity/disability in prospective cohorts of low back pain.
19
Spine (Phila Pa 1976). 2002;27(5):E109-20.
20
22. Koes BW, van Tulder MW, Thomas S. Diagnosis and treatment of low back pain.
21
BMJ. 2006;332(7555):1430-1434.
22
23. Kenny DT. Constructions of chronic pain in doctor-patient relationships: bridging
23
the communication chasm. Patient Educ Couns. 2004;52(3):297-305.
24
24. Deale A, S W. Patients’ perceptions of medical care in chronic fatigue syndrome.
25
Soc Sci Med. 2001;52(12):1859-1864.
AC C
EP
TE D
M AN U
SC
RI PT
1
31
ACCEPTED MANUSCRIPT 25. Brennan GP, Fritz JM, Hunter SJ, Thackeray A, Delitto A, Erhard RE. Identifying
2
Subgroups of Patients With Acute/Subacute, "Nonspecific"‚ Low Back Pain: Results
3
of a Randomized Clinical Trial. Spine (Phila Pa 1976). 2006;31(6):623-631.
4
26. Hopayian K, Song F, Riera R, Sambandan S. The clinical features of the
5
piriformis syndrome: a systematic review. Eur Spine J. 2010;19(12):2095-2109.
6
27. Helman CG. Disease versus illness in general practice. J R Coll Gen Pract.
7
1981;31(230):548-552.
8
28. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the
9
primary care office: a systematic review. J Am Board Fam Pract. 2002;15(1):25-38.
10
29. Zolnierek KB, Dimatteo MR. Physician communication and patient adherence to
11
treatment: a meta-analysis. Med Care. 2009;47(8):826-834.
12
30. Mermod J, Fischer L, Staub L, Busato A. Patient satisfaction of primary care for
13
musculoskeletal diseases: a comparison between Neural Therapy and conventional
14
medicine. BMC Complement Altern Med. 2008;8(33.
15
31. Michlig M, Ausfeld-Hafter B, Busato A. Patient satisfaction with primary care: a
16
comparison between conventional care and traditional Chinese medicine. Complement
17
Ther Med. 2008;16(6):350-358.
18
32. Campbell C, Guy A. 'Why can't they do anything for a simple back problem?' A
19
qualitative examination of expectations for low back pain treatment and outcome. J
20
Health Psychol. 2007;12(4):641-653.
21
33. Henschke N, Maher CG, Refshauge KM, Herbert RD, Cumming RG, Bleasel J et
22
al. Prognosis in patients with recent onset low back pain in Australian primary care:
23
inception cohort study. BMJ. 2008;337(b8329.
24
34. Bath B, Janzen B. Patient and referring health care provider satisfaction with a
25
physiotherapy spinal triage assessment service. J Multidiscip Healthc. 2012;5(1-15.
AC C
EP
TE D
M AN U
SC
RI PT
1
32
ACCEPTED MANUSCRIPT 35. Borkan J, Reis S, Hermoni D, Biderman A. Talking about the pain: a patient-
2
centered study of low back pain in primary care. Soc Sci Med. 1995;40(7):977-988.
3
36. Campbell WW, Landau ME. Controversial entrapment neuropathies. Neurosurg
4
Clin N Am. 2008;19(4):597-608, vi-vii.
5
37. Chew CA, May CR. The benefits of back pain. Fam Pract. 1997;14(6):461-465.
6
38. Cooper K, Smith BH, Hancock E. Patient-centredness in physiotherapy from the
7
perspective of the chronic low back pain patient. Physiotherapy. 2008;94(3):244-253.
8
39. Dean SG, Smith JA, Payne S, Weinman J. Managing time: an interpretative
9
phenomenological analysis of patients' and physiotherapists' perceptions of adherence
SC
RI PT
1
to therapeutic exercise for low back pain. Disabil Rehabil. 2005;27(11):625-637.
11
40. Espeland A, Baerheim A, Albrektsen G, Korsbrekke K, Larsen JL. Patients' views
12
on importance and usefulness of plain radiography for low back pain. Spine (Phila Pa
13
1976). 2001;26(12):1356-1363.
14
41. Evans RL, Maiers MJ, Bronfort G. What do patients think? Results of a mixed
15
methods pilot study assessing sciatica patients' interpretations of satisfaction and
16
improvement. J Manipulative Physiol Ther. 2003;26(8):502-509.
17
42. Laerum E, Indahl A, Skouen JS. What is "the good back-consultation"? A
18
combined qualitative and quantitative study of chronic low back pain patients'
19
interaction with and perceptions of consultations with specialists. J Rehabil Med.
20
2006;38(4):255-263.
21
43. Layzell M. Back pain management: a patient satisfaction study of services. Br J
22
Nurs. 2001;10(12):800-807.
23
44. Liddle SD, Baxter GD, Gracey JH. Chronic low back pain: Patients' experiences,
24
opinions and expectations for clinical management. Disabil Rehabil.
25
2007;29(24):1899-1909.
AC C
EP
TE D
M AN U
10
33
ACCEPTED MANUSCRIPT 45. Lillrank A. Back pain and the resolution of diagnostic uncertainty in illness
2
narratives. Soc Sci Med. 2003;57(6):1045-1054.
3
46. May CR, Rose MJ, Johnstone FC. Dealing with doubt. How patients account for
4
non-specific chronic low back pain. J Psychosom Res. 2000;49(4):223-225.
5
47. May S. Patients' attitudes and beliefs about back pain and its management after
6
physiotherapy for low back pain. Physiother Res Int. 2007;12(3):126-136.
7
48. May SJ. Patient satisfaction with management of back pain. Physiotherapy.
8
2001;87(1):4-21.
9
49. McIntosh A, Shaw CFM. Barriers to patient information provision in primary
SC
RI PT
1
care: patients' and general practitioners' experiences and expectations of information
11
for low back pain. Health Expect. 2003;6(1):19-30.
12
50. McPhillips-Tangum CA, Cherkin DC, Rhodes LA, Markham C. Reasons for
13
repeated medical visits among patients with chronic back pain. J Gen Intern Med.
14
1998;13(5):289-295.
15
51. Ong BN, Konstantinou K, Corbett M, Hay E. Patients' own accounts of sciatica: a
16
qualitative study. Spine (Phila Pa 1976). 2011;36(15):1251-1256.
17
52. Rhodes LA, McPhillips-Tangum CA, Markham C, Klenk R. The power of the
18
visible: the meaning of diagnostic tests in chronic back pain. Soc Sci Med.
19
1999;48(9):1189-1203.
20
53. Schers H, Wensing M, Huijsmans Z, van M, Grol R. Implementation barriers for
21
general practice guidelines on low back pain a qualitative study. Spine (Phila Pa
22
1976). 2001;26(15):E348-353.
23
54. Skelton AM, Murphy EA, Murphy RJL, O'Dowd TC. Patient education for low
24
back pain in general practice. Pat Educ Couns. 1995;25(3):329-334.
AC C
EP
TE D
M AN U
10
34
ACCEPTED MANUSCRIPT 55. Skelton AM, Murphy EA, Murphy RJ, O'Dowd TC. Patients' views of low back
2
pain and its management in general practice. Br J Gen Pract. 1996;46(404):153-156.
3
56. Sokunbi O, Cross V, Watt P, Moore A. Experiences of individuals with chronic
4
low back pain during and after their participation in a spinal stabilisation exercise
5
programme -- a pilot qualitative study. Man Ther. 2010;15(2):179-185.
6
57. Toye F, Barker K. Persistent non-specific low back pain and patients' experience
7
of general practice: a qualitative study. Prim Health Care Res Dev. 2012;13(1):72-84.
8
58. Underwood MR, Harding G, Moffett JK. Patient perceptions of physical therapy
9
within a trial for back pain treatments (UK BEAM) [ISRCTN32683578].
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Rheumatology. 2006;45(6):751-756.
11
59. Vroman K, Warner R, Chamberlain K. Now let me tell you in my own words:
12
narratives of acute and chronic low back pain. Disabil Rehabil. 2009;31(12):976-988.
13
60. Walker J, Holloway I, Sofaer B. In the system: the lived experience of chronic
14
back pain from the perspectives of those seeking help from pain clinics. Pain.
15
1999;80(3):621-628.
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Table 1 Synthesis of Quantitative vs Qualitative Studies
19
Fig. 1 Flow of records
20
Table 2 Study characteristics and quality scores
21
Table 3 Themes and related content
22
Fig. 2 Themes
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Outcomes Analysis
Purpose of Product
Specified in advance, data may be pooled to produce an effect size To increase the precision of effect size estimate
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Data collection
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Quality assessment
Criteria such as study types, samples, outcome measures Greater agreement on criteria and scales to use Extraction from studies is specified in advance Specified in advance
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Inclusion
Qualitative Comprehensive or up to saturation Purposive: chooses study best suited to provide richest data Less agreement on criteria and scales to use Re-iterated as collection proceeds Emerge from the data during collection and analysis Emerges through coding and categorization to produce a theoretical framework To improve the transferability of results
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Search
Quantitative Comprehensive
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Setting Spinal triage service, Canada
Duration pain Uncertain
Sampling method
Participants
Convenience sample
Identification from chart review then purposeful sampling. Not stated
Patients referred to primary/ secondary care triage service Back pain in past year
Borkan J, 1995
2
General practice, Israel
Uncertain
Campbell C, 2007
3
Pain clinic, UK
Chronic
Chew CA, 1997
4
Chronic
Cooper K, 2008 Dean SG, 2005
5
Back clinic (osteopath and acupuncturist), UK Physiotherapy, UK
6
Physiotherapy, UK
Acute & Subacute
Espeland A, 2001
7
Mixed 36 acute 63 chronic
Consecutive patients
Evans RL, 2003
8
Xray department, combined with quantitative study Norway Chiropractic, alongside controlled trial, USA
Mixed but >50% had pain for> 1y
Laerum E, 2006
9
Variety of secondary care specialists, Norway
Mixed
Volunteers for an RCT of spinal manipulation, epidural steroid and home exercise Consecutive patients then maximum variation sample
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Chronic
Data analysis
Quality score 9.5
Questionnaire
Inductive thematic analysis approach
Focus group, interview and observation Focus group
Grounded theory
11
Thematic analysis
10.75
Interview - semistructured
Vague, “conventional qualitative method”
9.25
Interview - semistructured Interview - semistructured
Framework analysis
10.75
Interpretative Phenomenological Analysis
8.75
Questionnaire & semi-structured interview
Template analysis
9.25
Sciatica patients with symptoms ≥ 4 weeks, pain ≥ 3 on 0-10 scale
Interview - semistructured
Content analysis
9.75
Sciatica 12 plus 2 back pain, 2-7 years duration
Observation then interview - semistructured
Grounded theory
10.75
Pain management programme graduates seeking further referral Patients registered at one primary care practice Had received ≥ 2 physiotherapy sessions Recurring LBP referred to physiotherapist during current exacerbation Patients referred by GPs for lumbosacral spine Xrays
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Diverse sample from those referred to new service Purposive sampling from discharge files Convenience sample from one community department
Data collection
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Bath B, 2012
Study No. 1
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Study
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(1) 200 consecutive discharges from physiotherapy department (2) By advertisement from own pain services unit Email advertising then consecutive selection Entrants to a writing competition
Liddle SD, 2007
11
University campus, Northern Ireland
Chronic
Lillrank A. 2003
12
Community, Finland
Chronic
May CR, 2000
13
Back pain rehabilitation, UK
Chronic >12m
May S, 2007
14
Physiotherapy, UK
Mixed
May SJ, 2001
15
Physiotherapy, UK
Mixed
McIntosh A, 2003
16
General practice, UK
Mixed
McPhillipsTangum CA, 1998
17
Chronic
Ong BN, 2011
18
Organisation with managed health programme, combined with quantitative study USA General practice, combined with quantitative study, UK
12 randomly selected from consecutive sample of 24 Systematic sampling every fifth on list from above Random - every fifth name Patients invited by GPs who were part of an interview study Random sample from records
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Back Pain
Purposive sample nested within a large cohort study mostly observed by questionnaire.
Questionnaire & Focus group
(1) Descriptive (2) Grounded theory
6.5
Focus group
Grounded theory
11
Free text questionnaire
Phenomenological description and hermeneutic explanation (Ricoeur) Content analysis
9.75
8.5
Interview - semistructured
Framework analysis
8.5
Interview - semistructured
Framework analysis, fully described
10
Focus group
Framework analysis
9.25
Interview - semistructured followed by Qaire
Content analysis
10.75
Interviews – not specified
Constant comparative method
10.5
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Mixed
Anyone with back pain >3 months in past year
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(1) Physiotherapy and (2) Acute Pain Services, combined with quantitative study UK
Women with back pain
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Layzell M, 2001
Patients referred from pain clinic to back pain rehabilitation unit pain Patients who had received care in previous year Patients who had received care in previous year Patients who had consulted GP in previous 12 months CBLP defined as ≥ 3 visits to doctor over 3 yrs for back pain with episodes at least 90 days apart Sciatica sufferers
Interview - semistructured
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Thematic analysis
10.75
Interview - semistructured
“Categorised” – no further details
8
Interview - semistructured
Grounded theory
8.25
Same sample as Skelton 1995, different set of results Entering rehabilitation programme and taken part in an exercise programme Participation in spinal stabilisation exercises
Same interview Skelton 1995
Grounded theory
8.75
Focus group
Grounded theory
11
Focus group
Thematic analysis
7
Patients attending pain management programme LBP ≥ 4 weeks and consulted GP
Interview - semistructured
Grounded theory
10.75
Free text questionnaire
Modified framework approach
6.5
Not stated
Acute and CLBP Chronic benign low back pain
Thematic content analysis “Inductive” phenomenology
9.5
Initially consecutive then maximum variation
Free text questionnaire Open interview
Chronic
Random from register of patients
Schers H, 2001
20
General practice, Netherlands
Uncertain
Skelton AM, 1995
21
General practice, UK
Uncertain
Skelton AM, 1996
22
General practice, UK
Uncertain
Slade SC, 2009
23
Back pain rehabilitation, Australia
Mixed
Sokunbi O, 2010
24
Physiotherapy, nested in controlled trial, UK
Chronic
Toye F, 2012
25
Pain clinic, UK
Chronic
Underwood MR, 2006
26
Mixed
Vroman K, 2009 Walker J, 1999
27
General practice, nested in controlled trial, UK Variety of clinics, USA Pain clinic, UK
Next patient seen during study period by participating GPs Phasic representative practices then one GP select 7 consecutive patients Same sample as Skelton 1995, different set of results Advertising in community newspapers and university email All patients who took part in active arms of RCT Invitation to all who had attended in a 3 month period, All patients in large RCT recruited by GPs
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AC C
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56 acute 77 chronic Chronic
CBLP defined as ≥ 3 visits to doctor over 3 yrs for back pain with episodes at least 90 days apart - this approximates to patients w CBLP Patients seeing GP for back pain, not specified other than >18yo > 1 episode low back pain excluding sciatica
Interview - semistructured
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Organisation with managed health programme, USA
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19
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Rhodes LA, 1999
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No. Codes 57 42 31
No. citations 25 21 16
8 7
27 35
16 19
19 21 11
15 18 9
12
12
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No. High Order Codes 13 12 8
6 3 3 2
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Theme Process and content of care Outcome of care Recognising the expert Patient-practitioner relationship & Interpersonal skills Treated as an individual Information about condition, management and self care Vital to have diagnosis Service matters Legitimation: having a diagnosis means being believed
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ACCEPTED MANUSCRIPT Acknowledgements We are grateful to Wendy Marsh and Lynn Scannell, Knowledge Services, Suffolk
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Public Health for database searches and article retrieval.
S1529-9430(14)00226-5
DOI:
10.1016/j.spinee.2014.02.029
Reference:
SPINEE 55789
To appear in:
The Spine Journal
Received Date: 23 July 2013 Revised Date:
7 December 2013
Accepted Date: 12 February 2014
Please cite this article as: Hopayian K, Notley C, A systematic review of low back pain and sciatica patients’ expectations and experiences of health care, The Spine Journal (2014), doi: 10.1016/ j.spinee.2014.02.029. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT A systematic review of low back pain and sciatica patients’ expectations and
2
experiences of health care.
3 4
Dr Kevork Hopayian
5
General practitioner, Leiston Surgery, Suffolk, and Honorary Senior Clinical Lecturer
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Norwich Medical School, University of East Anglia, Norfolk, England
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7 Dr Caitlin Notley
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Research Fellow, Norwich Medical School, University of East Anglia, Norfolk, England
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11 12 Corresponding address
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Dr Kevork Hopayian
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Seahills, Leiston Rd, Aldeburgh, Suffolk, England, IP15 5PL
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[email protected]
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A systematic review of low back pain and sciatica patients’ expectations and
3
experiences of health care.
4 Background
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Previous systematic reviews of patients’ experience of health services have used
7
mixed qualitative and quantitative studies. This review focused on qualitative studies,
8
which are more suitable for capturing experience, using modern methods of synthesis
9
of qualitative studies.
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10 Purpose
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To describe the experience of health care of low back pain and sciatica patients and
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the sources of satisfaction or dis-satisfaction with special reference to patients who do
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not receive a diagnosis.
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15 Study design
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A systematic review of qualitative studies
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Sample
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Primary qualitative studies identified from MEDLINE, EMBASE, CINAHL and
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Psychinfo databases.
22 23
Outcome measures
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Conceptual themes of patients’ experiences.
25
1
ACCEPTED MANUSCRIPT Method
2
Data collection and analysis was through thematic content analysis. Two reviewers
3
independently screened titles, collected and analysed data. The authors were in receipt
4
of a Primary Care Research Bursary from NHS Suffolk and Norfolk Research
5
Departments, a not-for-profit organization.
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6 Results
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Twenty eight articles met the inclusion criteria. Most studies were of high quality.
9
Nine themes emerged: the process and content of care; relationships and interpersonal
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skills; personalised care; information; the outcome of care; the importance of a
11
diagnosis; delegitimation; recognising the expert; and service matters. How care was
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given mattered greatly to patients, with importance given to receiving a perceived full
13
assessment, consideration for the individual’s context, good relationships, empathy
14
and the sharing of information. These aspects of care facilitated the acceptance by
15
some of the limitations of health care and were spread across disciplines. Not having a
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diagnosis made coping more difficult for some but for others led to delegitimation, a
17
feeling of not being believed. Service matters such as cost and waiting time received
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little mention.
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Conclusions
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While much research into the development of chronic LBP has focused on the patient,
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this review suggests that research into aspects of care also warrant research. The
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benefits of generic principles of care, such as personalisation and communication, are
24
important to patients with LBP and sciatica so practitioners may help their patients by
25
paying as much attention to them as to specific interventions. When neither cure nor a
2
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diagnostic label are forthcoming, generic skills remain important for patient
2
satisfaction.
3 4
Introduction
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5 Patient experience
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Previous systematic reviews of patients’ experience of health care for low back pain
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(LBP) have combined quantitative and qualitative studies1. A new review is needed
9
for four reasons. First, more studies have appeared since earlier reviews1. Second,
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qualitative research is best suited for understanding experience so a review focused on
11
qualitative studies is warranted2. Third, the methodology of synthesising qualitative
12
studies has progressed. Fourth, the most recent review3 was directed at research
13
methodology rather than practice. Thus an updated review of qualitative studies using
14
modern methods is warranted.
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Theoretical Approach
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Grounded theory is the qualitative method most commonly used in medical research.
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Data items, such as each comment in an interview, are assigned brief descriptions,
19
codes. Codes are compared to develop higher codes that link them. Previous data and
20
codes may be re-analyzed and further data collected as analysis proceeds, a process
21
termed iteration. Iteration continues until no new information emerges, the point of
22
saturation when themes have been developed that capture the varying experiences of
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the subjects, creating a theoretical framework.
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3
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The synthesis of qualitative research in medicine is less well established than the
2
synthesis of quantitative research. While both aim to distil the best available evidence,
3
there are important differences (table 1).
4 Sciatica patients
6
It could be hypothesised that sciatica patients have different experiences of health
7
care, particularly its psychosocial aspects, because sciatica is associated with
8
definable pathologies, most commonly disc herniation and lumbar spinal stenosis,
9
while most cases of LBP are labelled non-specific. However, some argue that a
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significant proportion of sciatica is not explained by those pathologies4 and others
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dispute that LBP is non-specific and argue that specific diagnoses can and should be
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made5.
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13 Aims
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The principal aims were to describe the experience of health care of LBP and sciatica
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patients and the sources of satisfaction or dis-satisfaction. A secondary aim was
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describe the experience and satisfaction of patients who do not receive a diagnosis.
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Method
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Search
21
The MEDLINE, EMBASE, CINAHL and Psychinfo databases were searched for
22
publications up to the period 22 May 2012. Both free text and thesaurus terms were
23
used to maximise yield 6: [back pain.ti,ab OR sciatic*.ti,ab OR exp back pain OR exp
24
sciatica] AND [expectation.ti,ab OR experience.ti,ab OR satisf*.ti,ab OR exp patient
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satisfaction OR exp client satisfaction OR qualitative.ti.ab OR exp qualitative
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research]
3 The grey literature was searched in The Health Management Information Consortium
5
database and the System for Information on Grey Literature in Europe up to the
6
period 22 May 2012 using the terms: back pain, sciatica, satisfaction, expectation,
7
experience, and qualitative.
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9
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Both reviewers independently screened titles and abstracts for eligibility. The references of all retrieved articles were screened. Disagreements were resolved by
11
discussion.
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12 Eligibility
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Studies were included if:
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Patients had LBP or sciatica of any duration.
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Patients had received health care directed at diagnosis or management.
17
Health care was delivered by a practitioner who could be a primary care physician,
18
physiotherapist, chiropractor, osteopath, a secondary care specialist physician or
19
surgeon.
20
The study used a recognised qualitative methodology7 including: solely qualitative
21
studies: mixed methods studies (patient experience reported both quantitatively and
22
qualitatively); questionnaire surveys using open questions to collect and interpret data
23
qualitatively; and qualitative studies that were parallel to or imbedded in trials or
24
observational studies.
25
Reported outcomes were patients’ experience of care provided by a practitioner or
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ACCEPTED MANUSCRIPT satisfaction with such care. Studies that reported patients’ expectations of care were
2
included where they provided data relevant to experience or satisfaction.
3
Reports were in English, Spanish, French or Greek.
4
Studies were excluded if:
5
They reported on rehabilitation programmes that had no element of diagnosis or
6
management.
7
They reported on self-care obtained from sources other than a health care practitioner,
8
such as self-help associations.
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9 Method of synthesis
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Thematic content analysis8 is a method of synthesizing qualitative studies that is
12
similar to grounded theory. It uses an iterative method of collating and analysing data
13
to create themes. Like synthesis of quantitative studies. the search strategy, inclusion
14
criteria and quality assessment are pre-specified.
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Quality assessment
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The 12-item EPPi Centre’s tool8 to score the methodological quality of qualitative
18
studies 9 is suitable for all qualitative study designs. It has been widely employed10-18.
19
Scores were assigned as 1 if a criterion was met, 0 if not met and 0.5 if partially met.
20
Each study was assessed independently by the reviewers and their mean score taken
21
as the final.
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22 23
Data collation and analysis
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Each article was analysed independently by two reviewers. Each portion of text
25
pertinent to the research questions was assigned an initial code, close to the original
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2
reviewers and differences discussed. As coding progressed, initial codes were
3
compared for connections to develop higher order codes. Iterative comparison
4
between codes, earlier text and emerging high order codes continued to saturation.
5
Data entry and analysis were performed with a customised database.
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6 Results
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Search
9
Twenty eight studies out of 293 titles met the inclusion criteria (fig. 1) in a variety of
10
settings (table 2). Eighteen studies were from the UK and four from the USA. Of 15
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non-English titles, only three were excluded for language reasons alone.
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12 Quality of studies
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Most studies were of high quality: twenty three scored 8 or more; median quality 9.6;
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and range 6.5–11. The intra-class correlation between reviewers was 0.86 indicating
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good agreement.
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Themes
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One hundred and ninety nine codes, fifty high order codes and nine themes emerged
20
(fig. 2). Themes demonstrated both connectivity (overlap of high order codes) and
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contradictions. Contradictions were seen between some high order codes within each
22
theme. Supporting quotes are identified by study number, S, and original page
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number, p.
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24 25
1 Process and content of care
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This theme was associated with the most codes and citations (table 3) and the largest
2
number of links to other themes (fig. 2). Patients valued highly what they perceived to
3
be a sufficient assessment.
4 “Many participants placed importance on a thorough assessment, feeling that it
6
enabled their treatment [to] better relate to their needs”. S4p247
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Primary care might be a target for such criticism because it lacks specialist knowledge
9
and has shorter consultations but such criticism was not universal.
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“They praised general practitioners who took careful histories, carried out detailed
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examinations and ordered diagnostic investigations, and they appreciated being
13
offered explanations of the rationale behind such investigation”. S21p155
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Some studies reported that investigations, particularly radiography are perceived as
16
crucial to a thorough assessment despite widely accepted guidelines that plain
17
radiographs have limited value.
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“Radiography was sometimes considered more reliable than clinical investigation”
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S7p1360 and “…patients had been given a clear explanation, but doubted its
21
validity… because they believed that it was based on inadequate investigations”.
22
S21p157
23 24
In contrast, other studies found that careful history taking and examination,
25
particularly palpation of painful areas, may obviate the need for investigation.
8
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“Almost all (n 31) of the patients thought that the medical history taking and clinical
3
examination had been thorough and satisfactory”. S9p257
4 Most studies reported patients’ disquiet at any hint that their pain was not physically
6
based, something closely linked with delegitimation.
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“[patients] expressed their concerns/frustrations that their back problem during the
9
consultation was labeled as ‘‘just’’ being psychological or psychosomatic”. S9 p258
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In contrast, some patients welcomed an exploration of the psychosocial aspects of
12
their disease.
13
“Through the interviews it occurred that the patients’ concept of psychosocial issues
15
and that such issues had been discussed in most cases meant that the doctor had dealt
16
with a possible correlation (in both directions) between daily life situation, including
17
job, family, coping and quality of life aspects, role function and the patient’s LBP. In
18
25 of 35 consultations the patients felt that this was not focused on at all or to a small
19
extent and that they missed it”. S9p258
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Another contrast was between patients whose attitudes can be termed passive, in the
22
sense of seeking an intervention from practitioners to cure them, and active, in the
23
sense that they were ready to take steps to improve the situation (which might fall
24
short of cure).
25
9
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“Four patients said during the interview that they expected passive external
2
treatment” and “Five patients were convinced that surgery was what they needed in
3
order to get better”. S9p258
4 In contrast:
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“Some believed that patients had to do their bit in the treatment process for it to
8
work, otherwise the intervention is wasted” S14p131
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The interplay between patient expectations and the content of care influenced
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satisfaction. Expectations frequently meant lack of faith in medication.
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“There was also a sense that drugs, which were considered to be the principal
14
solution available from GPs, were inappropriate for back pain”. S26p752
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Expectations were not confined to drugs but extended to specific manual therapies as
17
well.
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“Seven took into account the actual treatment experience itself (i.e., the approach to
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treatment, technique used)”. S8p504
21 22
Several of the findings linked with the theme of personalized care: the desire to be
23
treated as an individual with individual needs and problems requiring individual
24
solutions.
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2 Personalized care
2
Closely linked to the process of care, patients wanted involvement in decisions:
3 “All participants expressed the need for mutual enquiry, problem-solving, negotiation
5
and renegotiation between care-provider and care-seeker to establish mutual
6
therapeutic goals”. S23p273
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Personalized care encompasses many things: taking account of patient preferences,
9
tailoring treatments for the individual and understanding the patient’s specific context.
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A study, conducted in the outpatient departments of a variety of disciplines, of what
11
constitutes a good back consultation discovered that:
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“A constant finding (observation and interviews) from the discussions/negotiations
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between the physician and the patient about treatment options was the importance of
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meeting the patient’s expectations and preferences (i.e. being patient-centred) in the
16
decision-making process”. S9p258
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This finding recurred in several studies. Patients wanted their circumstances assessed
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believing that the treatment ought to be customized for them as an individual.
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“…participants wanted care-providers to develop a comprehensive picture of the
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individual’s values, preferences and lifestyle in order to develop individualized
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programmes”. S23p273
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Practitioners with good skills who appeared to understand the individual’s context
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were valued in several studies.
2 “Patients described how it was important to know that the GP understood them as an
4
individual and the impact the pain was having on their lives”. S25p78
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3 Patient-practitioner relationship and Interpersonal skills
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The practitioner’s interpersonal skills and the relationship with the patient were rated
8
as important across several disciplines and settings. A study of physiotherapy patients
9
reported:
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“They particularly valued behaviours such as listening and responding to their
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questions, consulting with them about the effectiveness of the therapy and relating the
13
intervention to their individual self help needs”. S24p183
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Empathy and understanding were essential components of practitioners’ inter-action:
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“Appreciation by clinicians of how sciatica affected people’s lives and self-image was
18
mentioned as key to an effective therapeutic relationship”. S25p78
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Showing an interest in patients and treating them as individuals helped the
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development of good relationships which in turn improved patients’ co-operation in
22
self-care.
23 24
“Consideration of life circumstances and preferences was important to all
25
participants in developing therapeutic partnerships and optimizing exercise
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outcomes”. S23p273
2 3
Good communication skills and the sharing of information may partly explain why
4
some patients come to accept the rationale of therapy while others do not.
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“The importance of clear information and explanation emerged from many of the
7
accounts, and they felt that this would help them cope with the diagnosis and
8
prognosis”. S15p132
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9 4 Outcome of care
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Patients with acute pain start with notions of cure but when pain becomes chronic
12
expectations may shift to achieving strategies for adaptation.
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“Although many patients had come to accept that the problem was not curable they
15
frequently expressed satisfaction with strategies for self-help that they had learnt
16
through physiotherapy”. S15 p15
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Some adapted to the situation and were satisfied with the care they received,
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accepting that information and coping strategies was all that could be offered.
20
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“…many expressed overall satisfaction with care, suggesting that this did not relate
22
simply to the outcome of pain” S15p15 and “Although many patients had come to
23
accept that the problem was not curable they frequently expressed satisfaction with
24
strategies for self-help that they had learnt through physiotherapy”. S15p15
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Yet in contrast, some patients with chronic LBP never relinquished the goal of
2
achieving cure and translated failure of treatment to lack of practitioners’
3
commitment.
4 “What is evident from these narratives is that despite their continuing frustration and
6
anger [with services] participants clearly felt that a cure was not only possible but
7
should be readily available”. S3p34
RI PT
5
10
In chronic pain. other outcomes become important, such as functional ability, quality of life and reassurance.
M AN U
9
SC
8
11
“Approximately half of the respondents in this study rated a change in their ability to
13
perform certain activities to be a factor they considered when evaluating their overall
14
improvement, and just over half considered quality of life to be one of the most
15
important outcomes to them”. S8p506.
16
TE D
12
5 Recognising the expert
18
Patients have ideas about which discipline, if any, is the expert in their condition.
19
Some patients thought that GPs lack necessary knowledge and skills compared to
20
other practitioners.
AC C
21
EP
17
22
“Patients described how GPs lacked specialist knowledge that would allow them to
23
effectively treat back pain…”. S27p79.
24 25
However, this was not a universal finding. Patients with recurrent low back pain were
14
ACCEPTED MANUSCRIPT 1
reported to be satisfied with GP care.
2 3
“…[patients] believed that it was appropriate to visit their general practitioner
4
routinely for episodes of low back pain”. S21p257
RI PT
5 6
The importance of interpersonal skills and empathy arose again, affecting the
7
perception of who is the expert.
9
SC
8
“Non-orthodox and folk healers are often perceived as being more empathetic, more knowledgeable, having better diagnostic skills and providing more effective
11
therapies” S2 p983
M AN U
10
12
However, another study found that patients attended a non-orthodox practitioner only
14
because conventional services had been exhausted.
TE D
13
15
“Most of these patients [who tried CAM] …as a desperate measure when their pain
17
became intolerable and an immediate general practitioner consultation was
18
unavailable or likely to be ineffective”. S21p280
AC C
19
EP
16
20
Recognition of expertise was tied in with expectations of the content of care.
21
Medication was seen by many as ineffective compared to other forms of treatment:
22 23
“…patients saw medication as just treating symptoms rather than ‘dealing with the
24
actual problem’”. S25p753
25
15
ACCEPTED MANUSCRIPT 1
6 Necessity of diagnosis
2
Even when no cure is possible, and perhaps even more so, having a diagnosis was
3
important to many patients. A study of chiropractic patients noted:
4 “A main and general finding of this study was the importance to the patient of
6
receiving an understandable explanation of the back pain or, if possible, getting a
7
diagnosis”. S8p257
RI PT
5
10
Receiving a diagnosis had other benefits, such as reassurance that the cause is not sinister:
11
M AN U
9
SC
8
12
“An explanation of the problem provided reassurance to some and also encouraged
13
self-management:.” S15p13
TE D
14
A diagnosis did not always necessitate imaging. An examination perceived as
16
adequate may explain why clinical diagnosis alone satisfies some patients.
17
EP
15
“These alternative healers frequently discern the exact site of the pain and often
19
touch it, something many conventional practitioners fail to do”. S2p983
20
AC C
18
21
In contrast, conventional practitioners sharing the diagnostic uncertainty inherent in
22
medicine may fail to reassure.
23 24
“There is frustration with the uncertainty present in the usual diagnostic
25
categorization”. S2p983
16
ACCEPTED MANUSCRIPT 1 2
A powerful driver for wanting a precise diagnosis was to have proof that there was
3
something truly wrong, to legitimate the pain.
4 7 Delegitimation
6
A theme that recurred through many of the studies of chronic LBP was the need for
7
legitimation: the feeling of “being seen, heard and believed, i.e. being taken
8
seriously”(S9). The opposite, delegitimation, added further pain to sufferers.
SC
RI PT
5
9
“An element of others questioning the authenticity of their LBP was articulated in the
11
distress and frustration experienced in interactions with medical professionals”.
12
S27p980
M AN U
10
13
Why this happens in back pain and sciatica may be linked to the absence of external
15
signs of disease.
TE D
14
16
“A theme across the narratives was that other people failed to appreciate their
18
suffering and because they appeared outwardly normal, did not take their pain (i.e.
19
them) seriously”. S27p980
AC C
20
EP
17
21
The link between legitimation and a physical diagnosis may explain why imaging was
22
sought by some patients.
23 24
“One method of legitimization is through attempts to make ‘visible’ the invisible by
25
seeking diagnostic validation of the cause of the pain”. S3p641
17
ACCEPTED MANUSCRIPT 1 2
8 Information
3
Several studies found a desire for information and dis-satisfaction when it was
4
inadequate. Information needs were summarised as:
RI PT
5
“… four key areas in which patients generally appreciated information giving: the
7
problem itself, the patients’ role in back care, the treatment process, the prognosis of
8
the condition”. S15p13
SC
6
9
These key areas recurred across studies. The quality of communication was as
11
important as the information.
12
M AN U
10
“…good communication involved: taking time over explanations; using appropriate
14
terminology: listening, understanding and getting to know the patient; and
15
encouraging the patient’s participation in the communication process”. S5p247
TE D
13
16 9 Service matters
18
Aspects of services that patients found unsatisfactory were access, appointments and
19
cost. In socialized services these included: the perception that generalists are a barrier
20
to specialist services, the length of waiting times and difficulty of access to
21
physiotherapists. In the private sector, cost was an important matter. There was little
22
linkage between service matters and the other themes.
AC C
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17
23 24
Subgroup analysis: Sciatica Patients
18
ACCEPTED MANUSCRIPT Analysis of the three studies that reported sciatica patients produced 30 high order
2
codes which mapped to the same nine themes from the overall analysis. These
3
included such experiences as wanting hospital specialists to consider their views,
4
taking their perspective and preferences into account, the importance of being
5
believed and the importance of empathy.
RI PT
1
6 Sensitivity analysis
8
Two sensitivity analyses were performed. Removing all studies of lower quality
9
(score less than the median) and removing all studies from Great Britain did not alter the themes or high order codes.
11
M AN U
10
SC
7
Discussion
13
Limitations and strengths
14
This review’s main limitation is the concentration of studies in English speaking
15
countries, mostly Great Britain. This might reduce transferability to other countries.
16
However, the sensitivity analysis excluding the British studies did not alter the results.
EP
17
TE D
12
Some argue against synthesising qualitative data because it removes the data from
19
their context, which is crucial to qualitative research. In contrast, we see
20
comprehensive synthesis as a strength. Some themes cut across the boundaries of
21
primary/secondary care and across all disciplines. The ubiquity of the findings
22
increases their transferability. We also found contrasting themes between studies
23
which revealed a richer description of the spectrum of patient experiences than any
24
individual study achieved. The main strength in relation to previous reviews is its
AC C
18
19
ACCEPTED MANUSCRIPT 1
systematic methods of qualitative research synthesis with rigorous data collection,
2
quality appraisal and analysis8. A further strength was the high quality of the studies.
3 Implications for practice
5
A mixed picture of patients’ experiences emerges from these studies. It is a truism
6
that patents’ expectation of care is cure. However, when the prospect of cure fades,
7
they adapt broadly in one of two ways. Some come to accept that the limits of
8
intervention have been reached and that they must take responsibility for further care.
9
Others continue to believe that cure is possible and that practitioners have failed.
SC
RI PT
4
Personal psychological features have been proposed as explanations for these
11
contrasting responses 19 20 21. The principal finding of this review is that aspects of
12
health care may also play a part. The extent to which patients perceived care to be
13
good influenced both their degree of satisfaction and their willingness to accept
14
professionals’ advice. The mixed picture was mirrored in the process and content of
15
care. While some patients welcomed questions on how psychosocial circumstances
16
related to pain, others interpreted them as doubting a physical basis for their pain. It
17
cannot be known from these studies whether it was the questions themselves or the
18
manner of asking that made the difference. The findings on communication skills
19
suggest the latter is important.
TE D
EP
AC C
20
M AN U
10
21
The importance of receiving a full assessment was shown by the contrast between
22
satisfied patients who perceived having a good clinical assessment and dis-satisfied
23
patients who perceived an inadequate one. Satisfaction was reported with all types of
24
practitioner but the studies of patients of alternative practitioners were illuminating.
25
These patients valued not only the examination, including touching the site of pain,
20
ACCEPTED MANUSCRIPT but also appreciated receiving a diagnosis. In contrast, patients of conventional
2
practitioners were frustrated by the ruling out process of diagnosis, a frustration that
3
could be compounded when no diagnosis is forthcoming, a common situation for 90%
4
of LBP patients22. For some, a lack of a diagnosis led to a state in which they felt their
5
suffering was denied. This state of delegitimation has been well described in many
6
other chronic painful conditions23 and where pathology is unproven 24
RI PT
1
7
Thus having a diagnosis can be of supreme importance to patients who do not
9
recover. Some form of explanation for pain may be better than none whilst attempts to describe subgroups of patients who currently have no diagnosis25 26 continue.
M AN U
10
SC
8
11
Practitioners can help such patients by giving them information about the condition,
13
what they could do to help themselves and their prognosis. This finding accords with
14
the folk model of illness in which patients seek answers to the questions: what has
15
happened, why, what will happen and what should I do?27 and confirms the
16
conclusions of the review by Verbeek et al1. Our review additionally shows the
17
importance of personalised care. While all practitioners aspire to provide it, this
18
review suggests that attention is not always paid to recognising the specific
19
circumstances of the individuals and involving them in decisions. Personalised care
20
was closely linked with the interpersonal skills of the practitioner. Good
21
communication skills, empathy and a close relationship were greatly valued and
22
reported to make patients feel involved in decisions and to improve adherence. This is
23
concord with studies of physician consultation styles in other conditions, where it has
24
been shown to improve patient outcomes28 29. One reason patients chose alternative
25
practitioners was that they found them more empathic, a finding not confined to LBP
AC C
EP
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12
21
ACCEPTED MANUSCRIPT and sciatica 30 31. Taken together, it seems that patients who do not recover want not
2
only an explanation for their pain and advice on what to do but to be given these with
3
empathy and consideration of their individual circumstances. These suggestions apply
4
also to sciatica patients since the hypothesis that they have different experiences was
5
not supported by the sub-group analysis.
RI PT
1
6 Implications for research
8
Patient satisfaction was found for each discipline but this could be due to selection
9
bias because most studies drew samples from attendees to a department. Nevertheless,
SC
7
no discipline was without the confidence of some patients, including non-specialist
11
general practitioners, so that future research should be directed at clarifying the
12
generic aspects of good care, namely forming relationships, personalising care, and
13
information sharing. Research into the impact of the process and content of care in
14
general, rather than the characteristics of patients, may offer new insights into the
15
“revolving door” 32 of repeated consultations and investigations in the significant
16
minority of LBP patients with chronic pain or disability 33.
17
EP
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M AN U
10
Contributions
19
KH conceived and designed the study. KH and CN collected and analysed the data.
20
KH wrote the drafts. KH and CN edited the final report. KH was in receipt of a
21
Primary Care Research Bursary from NHS Suffolk and Norfolk Research
22
Departments.
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18
23 24
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25
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7
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8 9
M AN U
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1. Verbeek J, Sengers MJ, Riemens L, Haafkens J. Patient expectations of treatment
12
for back pain: a systematic review of qualitative and quantitative studies. Spine.
13
2004;29(20):2309-2318.
14
2. Higgins JPT, Green S. Cochrane Handbook for Systematic Reviews of
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Interventions Version 5.1.0. http://www.cochrane-handbook.org/. 2011. Last
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accessed 10 Sept 2011.
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3. Georgy EE, Carr EC, Breen AC. Back pain management in primary care: patients'
18
and doctors' expectations. Qual Prim Care. 2009;17(6):405-413.
19
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1444.
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29
ACCEPTED MANUSCRIPT 6. Shaw RL, Booth A, Alex J Sutton AJ, Miller T, Smith JA, Young B et
2
al. Finding qualitative research: an evaluation of search strategies. BMC
3
Med Res Methodol. 2004;4(5.
4
7. Denzin NK, Lincoln YS, editors. Handbook of Qualitative Research. Thousand
5
Oaks: Sage Publications; 2000
6
8. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in
7
systematic reviews. BMC Med Res Methodol. 2008;8(45.
8
9. Thomas J, Sutcliffe K, Harden A, Oakley A, Oliver S, Rees R et al. Children and Healthy
9
Eating: A systematic review of barriers and facilitators.
M AN U
SC
RI PT
1
http://eppi.ioe.ac.uk/cms/Default.aspx?tabid=246. 2003. Last accessed 10 Sept 2011.
11
10. Bridges J, Flatley M, Meyer J. Older people's and relatives' experiences in acute
12
care settings: systematic review and synthesis of qualitative studies. Int J Nurs Stud.
13
2010;47(1):89-107.
14
11. Harden A, Brunton G, Fletcher A, Oakley A. Teenage pregnancy and social
15
disadvantage: systematic review integrating controlled trials and qualitative studies.
16
BMJ. 2009;339(b4254.
17
12. Lakshman R, Ogilvie D, Ong KK. Mothers' experiences of bottle-feeding: a
18
systematic review of qualitative and quantitative studies. Arch Dis Child.
19
2009;94(8):596-601.
20
13. Lewis RA, Neal RD, Hendry M, France B, Williams NH, Russell D et al. Patients'
21
and healthcare professionals' views of cancer follow-up: systematic review. Br J Gen
22
Pract. 2009;59(564):e248-59.
23
14. Lipworth WL, Davey HM, Carter SM, Hooker C, Hu W. Beliefs and beyond:
24
what can we learn from qualitative studies of lay people's understandings of cancer
25
risk? Health Expect. 2010;13(2):113-124.
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ACCEPTED MANUSCRIPT 45. Lillrank A. Back pain and the resolution of diagnostic uncertainty in illness
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narratives. Soc Sci Med. 2003;57(6):1045-1054.
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ACCEPTED MANUSCRIPT 55. Skelton AM, Murphy EA, Murphy RJ, O'Dowd TC. Patients' views of low back
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pain and its management in general practice. Br J Gen Pract. 1996;46(404):153-156.
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1999;80(3):621-628.
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Table 1 Synthesis of Quantitative vs Qualitative Studies
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Fig. 1 Flow of records
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Table 2 Study characteristics and quality scores
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Table 3 Themes and related content
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Fig. 2 Themes
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Outcomes Analysis
Purpose of Product
Specified in advance, data may be pooled to produce an effect size To increase the precision of effect size estimate
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Data collection
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Quality assessment
Criteria such as study types, samples, outcome measures Greater agreement on criteria and scales to use Extraction from studies is specified in advance Specified in advance
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Inclusion
Qualitative Comprehensive or up to saturation Purposive: chooses study best suited to provide richest data Less agreement on criteria and scales to use Re-iterated as collection proceeds Emerge from the data during collection and analysis Emerges through coding and categorization to produce a theoretical framework To improve the transferability of results
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Search
Quantitative Comprehensive
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Setting Spinal triage service, Canada
Duration pain Uncertain
Sampling method
Participants
Convenience sample
Identification from chart review then purposeful sampling. Not stated
Patients referred to primary/ secondary care triage service Back pain in past year
Borkan J, 1995
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General practice, Israel
Uncertain
Campbell C, 2007
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Pain clinic, UK
Chronic
Chew CA, 1997
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Chronic
Cooper K, 2008 Dean SG, 2005
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Back clinic (osteopath and acupuncturist), UK Physiotherapy, UK
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Physiotherapy, UK
Acute & Subacute
Espeland A, 2001
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Mixed 36 acute 63 chronic
Consecutive patients
Evans RL, 2003
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Xray department, combined with quantitative study Norway Chiropractic, alongside controlled trial, USA
Mixed but >50% had pain for> 1y
Laerum E, 2006
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Variety of secondary care specialists, Norway
Mixed
Volunteers for an RCT of spinal manipulation, epidural steroid and home exercise Consecutive patients then maximum variation sample
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Chronic
Data analysis
Quality score 9.5
Questionnaire
Inductive thematic analysis approach
Focus group, interview and observation Focus group
Grounded theory
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Thematic analysis
10.75
Interview - semistructured
Vague, “conventional qualitative method”
9.25
Interview - semistructured Interview - semistructured
Framework analysis
10.75
Interpretative Phenomenological Analysis
8.75
Questionnaire & semi-structured interview
Template analysis
9.25
Sciatica patients with symptoms ≥ 4 weeks, pain ≥ 3 on 0-10 scale
Interview - semistructured
Content analysis
9.75
Sciatica 12 plus 2 back pain, 2-7 years duration
Observation then interview - semistructured
Grounded theory
10.75
Pain management programme graduates seeking further referral Patients registered at one primary care practice Had received ≥ 2 physiotherapy sessions Recurring LBP referred to physiotherapist during current exacerbation Patients referred by GPs for lumbosacral spine Xrays
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Diverse sample from those referred to new service Purposive sampling from discharge files Convenience sample from one community department
Data collection
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(1) 200 consecutive discharges from physiotherapy department (2) By advertisement from own pain services unit Email advertising then consecutive selection Entrants to a writing competition
Liddle SD, 2007
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University campus, Northern Ireland
Chronic
Lillrank A. 2003
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Community, Finland
Chronic
May CR, 2000
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Back pain rehabilitation, UK
Chronic >12m
May S, 2007
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Physiotherapy, UK
Mixed
May SJ, 2001
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Physiotherapy, UK
Mixed
McIntosh A, 2003
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General practice, UK
Mixed
McPhillipsTangum CA, 1998
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Chronic
Ong BN, 2011
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Organisation with managed health programme, combined with quantitative study USA General practice, combined with quantitative study, UK
12 randomly selected from consecutive sample of 24 Systematic sampling every fifth on list from above Random - every fifth name Patients invited by GPs who were part of an interview study Random sample from records
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Back Pain
Purposive sample nested within a large cohort study mostly observed by questionnaire.
Questionnaire & Focus group
(1) Descriptive (2) Grounded theory
6.5
Focus group
Grounded theory
11
Free text questionnaire
Phenomenological description and hermeneutic explanation (Ricoeur) Content analysis
9.75
8.5
Interview - semistructured
Framework analysis
8.5
Interview - semistructured
Framework analysis, fully described
10
Focus group
Framework analysis
9.25
Interview - semistructured followed by Qaire
Content analysis
10.75
Interviews – not specified
Constant comparative method
10.5
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Mixed
Anyone with back pain >3 months in past year
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(1) Physiotherapy and (2) Acute Pain Services, combined with quantitative study UK
Women with back pain
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Patients referred from pain clinic to back pain rehabilitation unit pain Patients who had received care in previous year Patients who had received care in previous year Patients who had consulted GP in previous 12 months CBLP defined as ≥ 3 visits to doctor over 3 yrs for back pain with episodes at least 90 days apart Sciatica sufferers
Interview - semistructured
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Thematic analysis
10.75
Interview - semistructured
“Categorised” – no further details
8
Interview - semistructured
Grounded theory
8.25
Same sample as Skelton 1995, different set of results Entering rehabilitation programme and taken part in an exercise programme Participation in spinal stabilisation exercises
Same interview Skelton 1995
Grounded theory
8.75
Focus group
Grounded theory
11
Focus group
Thematic analysis
7
Patients attending pain management programme LBP ≥ 4 weeks and consulted GP
Interview - semistructured
Grounded theory
10.75
Free text questionnaire
Modified framework approach
6.5
Not stated
Acute and CLBP Chronic benign low back pain
Thematic content analysis “Inductive” phenomenology
9.5
Initially consecutive then maximum variation
Free text questionnaire Open interview
Chronic
Random from register of patients
Schers H, 2001
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General practice, Netherlands
Uncertain
Skelton AM, 1995
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General practice, UK
Uncertain
Skelton AM, 1996
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General practice, UK
Uncertain
Slade SC, 2009
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Back pain rehabilitation, Australia
Mixed
Sokunbi O, 2010
24
Physiotherapy, nested in controlled trial, UK
Chronic
Toye F, 2012
25
Pain clinic, UK
Chronic
Underwood MR, 2006
26
Mixed
Vroman K, 2009 Walker J, 1999
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General practice, nested in controlled trial, UK Variety of clinics, USA Pain clinic, UK
Next patient seen during study period by participating GPs Phasic representative practices then one GP select 7 consecutive patients Same sample as Skelton 1995, different set of results Advertising in community newspapers and university email All patients who took part in active arms of RCT Invitation to all who had attended in a 3 month period, All patients in large RCT recruited by GPs
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56 acute 77 chronic Chronic
CBLP defined as ≥ 3 visits to doctor over 3 yrs for back pain with episodes at least 90 days apart - this approximates to patients w CBLP Patients seeing GP for back pain, not specified other than >18yo > 1 episode low back pain excluding sciatica
Interview - semistructured
RI PT
Organisation with managed health programme, USA
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19
M AN U
Rhodes LA, 1999
10
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No. Codes 57 42 31
No. citations 25 21 16
8 7
27 35
16 19
19 21 11
15 18 9
12
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No. High Order Codes 13 12 8
6 3 3 2
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Theme Process and content of care Outcome of care Recognising the expert Patient-practitioner relationship & Interpersonal skills Treated as an individual Information about condition, management and self care Vital to have diagnosis Service matters Legitimation: having a diagnosis means being believed
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ACCEPTED MANUSCRIPT Acknowledgements We are grateful to Wendy Marsh and Lynn Scannell, Knowledge Services, Suffolk
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Public Health for database searches and article retrieval.
