581538 research-article2015
PMJ0010.1177/0269216315581538Palliative MedicineBest et al.
Review Article
Treatment of holistic suffering in cancer: A systematic literature review
Palliative Medicine 1–14 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315581538 pmj.sagepub.com
Megan Best1, Lynley Aldridge1, Phyllis Butow1, Ian Olver2, Melanie A Price1 and Fleur Webster3
Abstract Background: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness. Aim: This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients. Design: A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature. Data sources: MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992–2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritual or existential issues or concerns not leading to suffering. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are reported according to AMSTAR guidelines. Results: The studies represented seven intervention types. Meaning-centred, hope-centred and stress-reduction interventions were found to be effective. Results of both psycho-educational and spiritual interventions in improving spiritual well-being were mixed. Supportive-expressive interventions – with the exception of forgiveness therapy – were not efficacious. There was little or no evidence for the efficacy of creative and healing arts and other assessed interventions such as animal therapy and haptotherapy. Conclusion: This systematic review found that spiritual well-being, meaning, hope and benefit finding can be positively impacted by a variety of treatment modalities.
Keywords Suffering, treatment, cancer, review, intervention studies, spirituality
What is already known about the topic? •• Holistic suffering is a significant problem for patients at the end of life, but it is not clear what treatment approaches are most effective. What this paper adds? •• This review demonstrates that spiritual well-being, meaning, hope and hopelessness and benefit finding can be positively and significantly impacted by a variety of treatment modalities.
1Psycho-oncology
Co-operative Research Group (PoCoG), The University of Sydney, NSW, Australia 2Cancer Council Australia, Sydney, NSW, Australia 3Cancer Australia, Sydney, NSW, Australia
Corresponding author: Megan Best, Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Level 6 North, Lifehouse (C39Z), NSW 2006 Australia. Email: [email protected]
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
2
Palliative Medicine
Implications for practice, theory or policy •• Holistic suffering can be treated by a number of interventions which have been shown to be effective in a wide sample of populations.
Introduction Spirituality and suffering in the context of life-limiting disease have featured in an increasing number of publications over the last 10 years. There are many terms used to describe that experience of cancer patients which is precipitated by an existential crisis and develops into allencompassing distress, and definitions in this area of research are confused. Yet, this type of suffering is one of the most debilitating conditions experienced by dying patients and a neglected area of cancer care.1,2 Spirituality has been identified as a core domain for quality of life in cancer patients,3 and a lack of spiritual well-being can be experienced as holistic suffering which impairs the patient’s ability to cope.4,5 There is evidence that the trajectory of this type of suffering can be influenced,6 thus finding interventions that target it will be important for those caring for cancer patients. Our group has undertaken a systematic literature review in order to address this gap, by first better elucidating the concept of suffering, second, identifying how suffering has been assessed and measured and third, identifying interventions that have been demonstrated to be effective in dealing with the suffering of people diagnosed with cancer. As part of the first analysis, we constructed a definition of this phenomenon. According to the literature synthesis, suffering is understood as ‘an all-encompassing, dynamic, individual phenomenon characterized by the experience of alienation, helplessness, hopelessness and meaninglessness in the sufferer which is difficult for them to articulate. It is multidimensional and usually incorporates an undesirable, negative quality’.7 We proposed that this phenomenon should be named ‘holistic suffering’ in order to distinguish the all-encompassing suffering from distress from a single cause. In our second article, we found that this multidimensional concept has been assessed using a wide range of self-report questionnaire measures.8 Developing ways to alleviate holistic suffering is a relatively new area of research. A wide variety of interventions have been suggested, but the literature is spread across multiple disciplines and has not been reviewed as a whole for effectiveness. Two reviews of spiritual and religious interventions for oncology patients found that there was insufficient data examining the efficacy of spiritual and religious interventions to confidently assess their value. In 2008, LeMay and Wilson2 reviewed eight psychotherapeutic interventions addressing existential concerns of terminally ill patients and of those found that only long-term supportive-expressive group therapy met the criteria for a
‘probably efficacious’ treatment according to American Psychological Association guidelines. At that time, no therapies were well-established. The following year, Henoch and Danielson9 approached the problem by reviewing the literature to identify self-reported existential concerns among cancer patients, interventions targeting them and their applicability to everyday healthcare of cancer patients. Although they identified some interventions targeting existential concerns related to the struggle to maintain self-identity, they did not find any that were feasible for daily healthcare practice use. This article reports on the third arm of our review, namely, to identify and critically assess the quality and effectiveness of interventions addressing the holistic suffering of people diagnosed with cancer.
Method Search In 2012 and again in January 2015, we conducted a systematic search of the databases MEDLINE, EMBASE, the Cochrane Library and PsycINFO. Initial searches revealed that the number of interventions directly targeting suffering was small (n = 3). To ensure all relevant intervention studies were identified, the search strategy was developed using an iterative process. Results from preliminary searches were used to develop a list of concepts identified in the literature as synonymous with suffering, or potentially measurable attributes of suffering or their antonyms (see Table 1). The final search terms were entered into the above databases. (See Table 2 for an example search strategy; Table 2 online only.) In each database when applicable, for each term, the scope note was checked to ensure its appropriateness, the ‘used for’ field was checked for synonyms which could be included as free text terms, broader terms were viewed to assess whether it would be more appropriate (subsuming all narrower terms, including the current term) and narrower terms were explored to assess whether they should also be included (the search term was exploded where this was the case). All titles and abstracts were examined manually for relevance according to the selection criteria. In order to be included, reports had to be published in a peer-reviewed journal between 1992 and 2015 (in accordance with funding arrangements); be written in English;
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
3
Best et al.
Records identified through database searching (n = 6,036)
Records after duplicates plicates removed (n = 4,787)
Title/abstract ct screened scree (n = 4,787)
Records excluded (n = 3,730) Not adult cancer patients (n = 1,167) Not outcome of interest (n = 2,495) Wrong publication type (n = 68)
Full-text assessed sed for eligibility e (n = 1,057)
Records excluded (n = 1,011) Not adult cancer patients (n = 15) Not outcome of interest (n = 945) Wrong publication type (n = 13) Language not in English (n = 2) Intervention no CCT or RCT (n = 35) Duplicate content (n = 1)
Identified by hand search (n = 2)
Full text eligible for data extraction (n = 46)
Articles from which data extracted (n = 48)
Figure 1. Literature search.
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
4
Palliative Medicine
Table 1. Terms used synonymously with holistic suffering and potentially measurable attributes of suffering and their antonyms. Synonyms
Attributes and their antonyms
Suffering Existential distress Existential suffering Existential pain Spiritual distress Spiritual suffering Spiritual pain Psycho-spiritual distress Psycho-existential suffering Total pain Demoralisation
Hopelessness, despair Loss of meaning Sense of meaning/finding meaning Sense of coherence Purpose in life Hope Dignity Transcendence Spiritual well-being Peace Faith Crisis of faith
focus on adults who had been diagnosed with cancer; study either a controlled trial or a randomised controlled trial, as these provide more rigorous evidence to evaluate the effectiveness of an intervention; and include at least either suffering, or one of its synonyms, attributes or an antonym of these as one of the outcomes measured. Our rationale in including antonyms was that a high score for a response to treatment for suffering or its attributes would equate to a low score for the antonym. Reports were excluded if they focused on other patient groups or used other study designs; focused on suffering in patient groups with and without cancer, unless the results were reported separately for cancer patients, or unless the sample was predominantly cancer patients (95% or more); or focused predominantly on spiritual or existential issues (such as questions of faith, meaning or peace) that might be impacted by a cancer diagnosis but did not lead to suffering.4 We excluded papers which focused on the symptoms of suffering such as anxiety, fear, anger, grief, depression and a desire for hastened death. Although improvements of these symptoms would be expected with the treatment of holistic suffering, this study was designed to focus directly on the treatment of holistic suffering itself. Manual searches identified any additional relevant articles. These involved thorough examination of the reference lists of included papers and review articles identified by the above searches, and author searches to identify recent publications by authors whose work had been included in the review See Figure 1. Full details of the search strategy have been published elsewhere.7
Data extraction Information was extracted from articles meeting the inclusion criteria for the research question by two researchers (L.A. and M.B.). Where results were duplicated in more than one publication, articles were reviewed in combination
as necessary to extract the information desired. The following data were extracted: 1. Country/countries in which research was conducted; if not specified, author affiliation(s); 2. Population: age; gender; % cancer diagnosis; cancer type, severity, timing and treatment where specified; 3. Details of the intervention; 4. Details of the method, including the type of study; 5. Results.
Quality assessment Studies evaluating the efficacy of interventions were graded using the QualSyst quantitative checklist,10 a standard quality assessment criteria for evaluating research studies from a variety of fields (see Table 3; Table 3 online only). Double coding was performed (by L.A. and M.B.) and disagreements discussed until consensus was reached. The calculated scores were defined as strong (score of >80%), good (70%–80%), adequate (50%–70%) or limited (
PMJ0010.1177/0269216315581538Palliative MedicineBest et al.
Review Article
Treatment of holistic suffering in cancer: A systematic literature review
Palliative Medicine 1–14 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315581538 pmj.sagepub.com
Megan Best1, Lynley Aldridge1, Phyllis Butow1, Ian Olver2, Melanie A Price1 and Fleur Webster3
Abstract Background: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness. Aim: This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients. Design: A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature. Data sources: MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992–2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritual or existential issues or concerns not leading to suffering. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are reported according to AMSTAR guidelines. Results: The studies represented seven intervention types. Meaning-centred, hope-centred and stress-reduction interventions were found to be effective. Results of both psycho-educational and spiritual interventions in improving spiritual well-being were mixed. Supportive-expressive interventions – with the exception of forgiveness therapy – were not efficacious. There was little or no evidence for the efficacy of creative and healing arts and other assessed interventions such as animal therapy and haptotherapy. Conclusion: This systematic review found that spiritual well-being, meaning, hope and benefit finding can be positively impacted by a variety of treatment modalities.
Keywords Suffering, treatment, cancer, review, intervention studies, spirituality
What is already known about the topic? •• Holistic suffering is a significant problem for patients at the end of life, but it is not clear what treatment approaches are most effective. What this paper adds? •• This review demonstrates that spiritual well-being, meaning, hope and hopelessness and benefit finding can be positively and significantly impacted by a variety of treatment modalities.
1Psycho-oncology
Co-operative Research Group (PoCoG), The University of Sydney, NSW, Australia 2Cancer Council Australia, Sydney, NSW, Australia 3Cancer Australia, Sydney, NSW, Australia
Corresponding author: Megan Best, Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Level 6 North, Lifehouse (C39Z), NSW 2006 Australia. Email: [email protected]
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
2
Palliative Medicine
Implications for practice, theory or policy •• Holistic suffering can be treated by a number of interventions which have been shown to be effective in a wide sample of populations.
Introduction Spirituality and suffering in the context of life-limiting disease have featured in an increasing number of publications over the last 10 years. There are many terms used to describe that experience of cancer patients which is precipitated by an existential crisis and develops into allencompassing distress, and definitions in this area of research are confused. Yet, this type of suffering is one of the most debilitating conditions experienced by dying patients and a neglected area of cancer care.1,2 Spirituality has been identified as a core domain for quality of life in cancer patients,3 and a lack of spiritual well-being can be experienced as holistic suffering which impairs the patient’s ability to cope.4,5 There is evidence that the trajectory of this type of suffering can be influenced,6 thus finding interventions that target it will be important for those caring for cancer patients. Our group has undertaken a systematic literature review in order to address this gap, by first better elucidating the concept of suffering, second, identifying how suffering has been assessed and measured and third, identifying interventions that have been demonstrated to be effective in dealing with the suffering of people diagnosed with cancer. As part of the first analysis, we constructed a definition of this phenomenon. According to the literature synthesis, suffering is understood as ‘an all-encompassing, dynamic, individual phenomenon characterized by the experience of alienation, helplessness, hopelessness and meaninglessness in the sufferer which is difficult for them to articulate. It is multidimensional and usually incorporates an undesirable, negative quality’.7 We proposed that this phenomenon should be named ‘holistic suffering’ in order to distinguish the all-encompassing suffering from distress from a single cause. In our second article, we found that this multidimensional concept has been assessed using a wide range of self-report questionnaire measures.8 Developing ways to alleviate holistic suffering is a relatively new area of research. A wide variety of interventions have been suggested, but the literature is spread across multiple disciplines and has not been reviewed as a whole for effectiveness. Two reviews of spiritual and religious interventions for oncology patients found that there was insufficient data examining the efficacy of spiritual and religious interventions to confidently assess their value. In 2008, LeMay and Wilson2 reviewed eight psychotherapeutic interventions addressing existential concerns of terminally ill patients and of those found that only long-term supportive-expressive group therapy met the criteria for a
‘probably efficacious’ treatment according to American Psychological Association guidelines. At that time, no therapies were well-established. The following year, Henoch and Danielson9 approached the problem by reviewing the literature to identify self-reported existential concerns among cancer patients, interventions targeting them and their applicability to everyday healthcare of cancer patients. Although they identified some interventions targeting existential concerns related to the struggle to maintain self-identity, they did not find any that were feasible for daily healthcare practice use. This article reports on the third arm of our review, namely, to identify and critically assess the quality and effectiveness of interventions addressing the holistic suffering of people diagnosed with cancer.
Method Search In 2012 and again in January 2015, we conducted a systematic search of the databases MEDLINE, EMBASE, the Cochrane Library and PsycINFO. Initial searches revealed that the number of interventions directly targeting suffering was small (n = 3). To ensure all relevant intervention studies were identified, the search strategy was developed using an iterative process. Results from preliminary searches were used to develop a list of concepts identified in the literature as synonymous with suffering, or potentially measurable attributes of suffering or their antonyms (see Table 1). The final search terms were entered into the above databases. (See Table 2 for an example search strategy; Table 2 online only.) In each database when applicable, for each term, the scope note was checked to ensure its appropriateness, the ‘used for’ field was checked for synonyms which could be included as free text terms, broader terms were viewed to assess whether it would be more appropriate (subsuming all narrower terms, including the current term) and narrower terms were explored to assess whether they should also be included (the search term was exploded where this was the case). All titles and abstracts were examined manually for relevance according to the selection criteria. In order to be included, reports had to be published in a peer-reviewed journal between 1992 and 2015 (in accordance with funding arrangements); be written in English;
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
3
Best et al.
Records identified through database searching (n = 6,036)
Records after duplicates plicates removed (n = 4,787)
Title/abstract ct screened scree (n = 4,787)
Records excluded (n = 3,730) Not adult cancer patients (n = 1,167) Not outcome of interest (n = 2,495) Wrong publication type (n = 68)
Full-text assessed sed for eligibility e (n = 1,057)
Records excluded (n = 1,011) Not adult cancer patients (n = 15) Not outcome of interest (n = 945) Wrong publication type (n = 13) Language not in English (n = 2) Intervention no CCT or RCT (n = 35) Duplicate content (n = 1)
Identified by hand search (n = 2)
Full text eligible for data extraction (n = 46)
Articles from which data extracted (n = 48)
Figure 1. Literature search.
Downloaded from pmj.sagepub.com at SETON HALL UNIV on April 28, 2015
4
Palliative Medicine
Table 1. Terms used synonymously with holistic suffering and potentially measurable attributes of suffering and their antonyms. Synonyms
Attributes and their antonyms
Suffering Existential distress Existential suffering Existential pain Spiritual distress Spiritual suffering Spiritual pain Psycho-spiritual distress Psycho-existential suffering Total pain Demoralisation
Hopelessness, despair Loss of meaning Sense of meaning/finding meaning Sense of coherence Purpose in life Hope Dignity Transcendence Spiritual well-being Peace Faith Crisis of faith
focus on adults who had been diagnosed with cancer; study either a controlled trial or a randomised controlled trial, as these provide more rigorous evidence to evaluate the effectiveness of an intervention; and include at least either suffering, or one of its synonyms, attributes or an antonym of these as one of the outcomes measured. Our rationale in including antonyms was that a high score for a response to treatment for suffering or its attributes would equate to a low score for the antonym. Reports were excluded if they focused on other patient groups or used other study designs; focused on suffering in patient groups with and without cancer, unless the results were reported separately for cancer patients, or unless the sample was predominantly cancer patients (95% or more); or focused predominantly on spiritual or existential issues (such as questions of faith, meaning or peace) that might be impacted by a cancer diagnosis but did not lead to suffering.4 We excluded papers which focused on the symptoms of suffering such as anxiety, fear, anger, grief, depression and a desire for hastened death. Although improvements of these symptoms would be expected with the treatment of holistic suffering, this study was designed to focus directly on the treatment of holistic suffering itself. Manual searches identified any additional relevant articles. These involved thorough examination of the reference lists of included papers and review articles identified by the above searches, and author searches to identify recent publications by authors whose work had been included in the review See Figure 1. Full details of the search strategy have been published elsewhere.7
Data extraction Information was extracted from articles meeting the inclusion criteria for the research question by two researchers (L.A. and M.B.). Where results were duplicated in more than one publication, articles were reviewed in combination
as necessary to extract the information desired. The following data were extracted: 1. Country/countries in which research was conducted; if not specified, author affiliation(s); 2. Population: age; gender; % cancer diagnosis; cancer type, severity, timing and treatment where specified; 3. Details of the intervention; 4. Details of the method, including the type of study; 5. Results.
Quality assessment Studies evaluating the efficacy of interventions were graded using the QualSyst quantitative checklist,10 a standard quality assessment criteria for evaluating research studies from a variety of fields (see Table 3; Table 3 online only). Double coding was performed (by L.A. and M.B.) and disagreements discussed until consensus was reached. The calculated scores were defined as strong (score of >80%), good (70%–80%), adequate (50%–70%) or limited (
