564240
article2015
PMJ0010.1177/0269216314564240Palliative MedicineWosahlo and Maddocks
Letter to the Editor
Benchmarking the provision of palliative rehabilitation within the hospice setting
Introduction Rehabilitation is an integral component of a holistic palliative care approach.1 It enables people to reach or maintain their optimal levels of physical, sensory, intellectual and social functioning, regardless of life expectancy.1,2 Rehabilitation is the responsibility of all health and social care professionals, but is generally led by allied health professionals (AHPs). The evidence for palliative rehabilitation is limited, resulting in large variation in practice and uncertainty about how best to deliver care.2 To benchmark the provision of palliative rehabilitation, we undertook a national survey to determine current rehabilitation practices within the adult voluntary hospice sector. Objectives were to examine the range of AHP staffing, interventions, settings and evidence of service evaluation.
Methods We identified all 154 adult independent hospices in the United Kingdom from the Help the Hospices 2012 directory. Between July and September 2013, a questionnaire was sent via electronic-mail to lead staff for therapies or patient care. The questionnaire asked about the structure, scope and evaluation of rehabilitation services. Most items asked respondents to select from multiple, nonranked options. Ordinal data were summarised by median (inter-quartile range, IQR). Frequency counts and percentages with 95% confidence intervals (CIs) were calculated for overall responses. The level of AHP staffing was compared to overall hospice staffing and the population served using Chi-squared test for trend.
Results A total of 41 questionnaires were returned (response rate 26.6%). The sample provided a balanced representation of adult voluntary hospices, with respondents from each of the UK countries serving populations ranging from 1 million with overall staffing from 60 full-time equivalent employees. In all, 10, 4 and 27 were in an urban, rural or mixed setting, respectively.
Structure All but one hospice, which did not employ AHPs, considered that they carried out rehabilitation. Hospices
Palliative Medicine 2015, Vol. 29(5) 477–478 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314564240 pmj.sagepub.com
employed a median of 1–2 full-time equivalent AHPs, who led rehabilitation services in 78% (95% CI: 63, 88) of cases. Physiotherapists were most frequently employed, followed by occupational therapist, dietitians, then speech and language therapists. AHP staffing did not relate to overall staffing (p = 0.10) or population size (p = 0.22). Over half of hospices (56%) collaborated to provide cross-organisational rehabilitation services, usually via service level agreements with community providers.
Scope When asked which models were ‘frequently’ used for rehabilitation interventions, 88% (95% CI: 75, 95) used one-to-one care, 63% (95% CI: 48, 76) group settings and 42% (95% CI: 28, 57) home outreach services. A range of interventions was offered at least ‘regularly’ (Table 1). Interventions with high rates for ‘never’ being offered by hospices were cognitive/memory tasks, minor adaptations and speech/communication therapies (Table 1).
Evaluation Goal setting was used by 93% (95% CI: 81, 98) of respondents. Goals were usually verbally agreed with only 12% (95% CI: 5, 26) documenting the process. Only 37% (95% CI: 24, 52) of respondents regularly used outcome measures with inconsistency in tools used; the Barthel Index was most frequently used (5 hospices).
Discussion This in-depth survey demonstrates large variation in rehabilitation practice across independent hospices. AHP staffing did not relate to hospice size and may reflect variation in resource or value attributed to rehabilitation. Our data highlight scope for increased use of group settings and cross-organisational services, which could allow more patients to access services and encourage peer support. We also highlight a lack of documented goal setting and outcome measurement. Several challenges make the evaluation of palliative rehabilitation difficult. Patients vary in level of function and prognosis, global outcome measures are insensitive to change and there is inconsistency in measurement tools used.3 Goal attainment scaling has been used to quantify outcomes in other specialties, and this approach may have utility in this setting.4
Downloaded from pmj.sagepub.com at University of Sydney on November 14, 2015
478
Palliative Medicine 29(5)
Table 1. Palliative care interventions by frequency of use and delivery setting. One-to-one
Group
Regularly, n (%)
Never, n (%)
Regularly, n (%)
Never, n (%)
Anxiety/stress management Breathlessness management Cognitive/memory/perceptual interventions Creative arts/crafts Energy conservation Exercise Falls prevention Fatigue management Hydrotherapy/swimming Minor adaptationsa Non-pharmacological pain management Positioning and manual handlinga Reminiscence Speech/language/communication interventionsa
36 (88) 36 (88) 14 (34) 27 (66) 32 (78) 36 (88) 35 (85) 34 (83) 5 (12) 25 (61) 36 (88) 37 (90) 15 (37) 13 (32)
3 (7) 3 (7) 14 (34) 4 (10) 5 (12) 1 (3) 4 (10) 2 (5) 33 (80) 11 (27) 1 (3) 1 (3) 17 (41) 19 (46)
15 (37) 19 (46) 4 (10) 33 (80) 15 (37) 27 (66) 8 (20) 16 (39) 3 (7) – 6 (15) – 17 (41) –
10 (24) 12 (29) 31 (76) 5 (12) 18 (44) 6 (15) 25 (61) 15 (37) 35 (85) – 29 (71) – 16 (39) –
aFrequency
of use in the group setting not asked.
We acknowledge limitations to this work. The low response rate limits the ability to quantify overall service provision. There may be a selection bias towards hospices with established rehabilitation services. We also excluded National Health Service organisations which may offer more cross-organisational services. New palliative rehabilitation services are constantly being developed in the United Kingdom. Growth is also expected in the United States following a Medicare amendment permitting reimbursement of rehabilitation to prevent or slow down deterioration in a patient’s condition. Timely access to rehabilitation can be valuable to people experiencing functional loss and increasing dependency on others; however, evaluation is key to ensure services represent best value.5 In summary, this survey provides a benchmark to assess provision of palliative rehabilitation in the hospice setting. Large variation in clinical practice, together with the lack of evaluation through goal setting or outcome measurement, highlights the need for evidence-based development in this aspect of palliative care. Acknowledgements
Funding M.M. is supported by a National Institute for Health Research (NIHR) Post-Doctoral Fellowship and Clinical Trials Fellowship.
References 1.
Kanach FA, Brown LM and Campbell RR. The role of rehabilitation in palliative care services. Am J Phys Med Rehabil 2014; 93: 342–345. 2. Javier NS and Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med 2011; 14: 638–648. 3. Evans CJ, Benalia H, Preston NJ, et al. The selection and use of outcome measures in palliative and end-of-life care research: the MORECare international consensus workshop. J Pain Symptom Manage 2013; 46: 925–937. 4. Krasny-Pacini A, Hiebel J, Pauly F, et al. Goal attainment scaling in rehabilitation: a literature-based update. Ann Phys Rehabil Med 2013; 56: 212–230. 5. Higginson IJ, Evans CJ, Grande G, et al. Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med 2013; 11: 111. Penny Wosahlo1 and Matthew Maddocks2
We would like to extend our thanks to the clinicians who responded to the survey.
1Independent
Living Team, Farleigh Hospice, Chelmsford, UK of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK
2Department
Declaration of conflicting interests The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research (NIHR) or the Department of Health.
Corresponding author: Matthew Maddocks, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London SE5 9PJ, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at University of Sydney on November 14, 2015
article2015
PMJ0010.1177/0269216314564240Palliative MedicineWosahlo and Maddocks
Letter to the Editor
Benchmarking the provision of palliative rehabilitation within the hospice setting
Introduction Rehabilitation is an integral component of a holistic palliative care approach.1 It enables people to reach or maintain their optimal levels of physical, sensory, intellectual and social functioning, regardless of life expectancy.1,2 Rehabilitation is the responsibility of all health and social care professionals, but is generally led by allied health professionals (AHPs). The evidence for palliative rehabilitation is limited, resulting in large variation in practice and uncertainty about how best to deliver care.2 To benchmark the provision of palliative rehabilitation, we undertook a national survey to determine current rehabilitation practices within the adult voluntary hospice sector. Objectives were to examine the range of AHP staffing, interventions, settings and evidence of service evaluation.
Methods We identified all 154 adult independent hospices in the United Kingdom from the Help the Hospices 2012 directory. Between July and September 2013, a questionnaire was sent via electronic-mail to lead staff for therapies or patient care. The questionnaire asked about the structure, scope and evaluation of rehabilitation services. Most items asked respondents to select from multiple, nonranked options. Ordinal data were summarised by median (inter-quartile range, IQR). Frequency counts and percentages with 95% confidence intervals (CIs) were calculated for overall responses. The level of AHP staffing was compared to overall hospice staffing and the population served using Chi-squared test for trend.
Results A total of 41 questionnaires were returned (response rate 26.6%). The sample provided a balanced representation of adult voluntary hospices, with respondents from each of the UK countries serving populations ranging from 1 million with overall staffing from 60 full-time equivalent employees. In all, 10, 4 and 27 were in an urban, rural or mixed setting, respectively.
Structure All but one hospice, which did not employ AHPs, considered that they carried out rehabilitation. Hospices
Palliative Medicine 2015, Vol. 29(5) 477–478 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314564240 pmj.sagepub.com
employed a median of 1–2 full-time equivalent AHPs, who led rehabilitation services in 78% (95% CI: 63, 88) of cases. Physiotherapists were most frequently employed, followed by occupational therapist, dietitians, then speech and language therapists. AHP staffing did not relate to overall staffing (p = 0.10) or population size (p = 0.22). Over half of hospices (56%) collaborated to provide cross-organisational rehabilitation services, usually via service level agreements with community providers.
Scope When asked which models were ‘frequently’ used for rehabilitation interventions, 88% (95% CI: 75, 95) used one-to-one care, 63% (95% CI: 48, 76) group settings and 42% (95% CI: 28, 57) home outreach services. A range of interventions was offered at least ‘regularly’ (Table 1). Interventions with high rates for ‘never’ being offered by hospices were cognitive/memory tasks, minor adaptations and speech/communication therapies (Table 1).
Evaluation Goal setting was used by 93% (95% CI: 81, 98) of respondents. Goals were usually verbally agreed with only 12% (95% CI: 5, 26) documenting the process. Only 37% (95% CI: 24, 52) of respondents regularly used outcome measures with inconsistency in tools used; the Barthel Index was most frequently used (5 hospices).
Discussion This in-depth survey demonstrates large variation in rehabilitation practice across independent hospices. AHP staffing did not relate to hospice size and may reflect variation in resource or value attributed to rehabilitation. Our data highlight scope for increased use of group settings and cross-organisational services, which could allow more patients to access services and encourage peer support. We also highlight a lack of documented goal setting and outcome measurement. Several challenges make the evaluation of palliative rehabilitation difficult. Patients vary in level of function and prognosis, global outcome measures are insensitive to change and there is inconsistency in measurement tools used.3 Goal attainment scaling has been used to quantify outcomes in other specialties, and this approach may have utility in this setting.4
Downloaded from pmj.sagepub.com at University of Sydney on November 14, 2015
478
Palliative Medicine 29(5)
Table 1. Palliative care interventions by frequency of use and delivery setting. One-to-one
Group
Regularly, n (%)
Never, n (%)
Regularly, n (%)
Never, n (%)
Anxiety/stress management Breathlessness management Cognitive/memory/perceptual interventions Creative arts/crafts Energy conservation Exercise Falls prevention Fatigue management Hydrotherapy/swimming Minor adaptationsa Non-pharmacological pain management Positioning and manual handlinga Reminiscence Speech/language/communication interventionsa
36 (88) 36 (88) 14 (34) 27 (66) 32 (78) 36 (88) 35 (85) 34 (83) 5 (12) 25 (61) 36 (88) 37 (90) 15 (37) 13 (32)
3 (7) 3 (7) 14 (34) 4 (10) 5 (12) 1 (3) 4 (10) 2 (5) 33 (80) 11 (27) 1 (3) 1 (3) 17 (41) 19 (46)
15 (37) 19 (46) 4 (10) 33 (80) 15 (37) 27 (66) 8 (20) 16 (39) 3 (7) – 6 (15) – 17 (41) –
10 (24) 12 (29) 31 (76) 5 (12) 18 (44) 6 (15) 25 (61) 15 (37) 35 (85) – 29 (71) – 16 (39) –
aFrequency
of use in the group setting not asked.
We acknowledge limitations to this work. The low response rate limits the ability to quantify overall service provision. There may be a selection bias towards hospices with established rehabilitation services. We also excluded National Health Service organisations which may offer more cross-organisational services. New palliative rehabilitation services are constantly being developed in the United Kingdom. Growth is also expected in the United States following a Medicare amendment permitting reimbursement of rehabilitation to prevent or slow down deterioration in a patient’s condition. Timely access to rehabilitation can be valuable to people experiencing functional loss and increasing dependency on others; however, evaluation is key to ensure services represent best value.5 In summary, this survey provides a benchmark to assess provision of palliative rehabilitation in the hospice setting. Large variation in clinical practice, together with the lack of evaluation through goal setting or outcome measurement, highlights the need for evidence-based development in this aspect of palliative care. Acknowledgements
Funding M.M. is supported by a National Institute for Health Research (NIHR) Post-Doctoral Fellowship and Clinical Trials Fellowship.
References 1.
Kanach FA, Brown LM and Campbell RR. The role of rehabilitation in palliative care services. Am J Phys Med Rehabil 2014; 93: 342–345. 2. Javier NS and Montagnini ML. Rehabilitation of the hospice and palliative care patient. J Palliat Med 2011; 14: 638–648. 3. Evans CJ, Benalia H, Preston NJ, et al. The selection and use of outcome measures in palliative and end-of-life care research: the MORECare international consensus workshop. J Pain Symptom Manage 2013; 46: 925–937. 4. Krasny-Pacini A, Hiebel J, Pauly F, et al. Goal attainment scaling in rehabilitation: a literature-based update. Ann Phys Rehabil Med 2013; 56: 212–230. 5. Higginson IJ, Evans CJ, Grande G, et al. Evaluating complex interventions in end of life care: the MORECare statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med 2013; 11: 111. Penny Wosahlo1 and Matthew Maddocks2
We would like to extend our thanks to the clinicians who responded to the survey.
1Independent
Living Team, Farleigh Hospice, Chelmsford, UK of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London, UK
2Department
Declaration of conflicting interests The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research (NIHR) or the Department of Health.
Corresponding author: Matthew Maddocks, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King’s College London, London SE5 9PJ, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at University of Sydney on November 14, 2015
