Sarah Brearley

The physical and practical problems experienced by cancer survivors: A rapid review and synthesis of the literature

PURPOSE A rapid and comprehensive review to identify what is known and not known about the physical and practical problems faced by adult cancer survivors. METHODS A systematic literature review process was used. This focused on published reviews to enable a fast but rigorous identification of both the gaps and well-researched areas within survivorship. RESULTS The search identified 5121 reviews, of which 42 were screened and 9 met the quality and inclusion criteria. The majority of papers focused on physical well being (n = 6) with the remaining papers focusing on practical well being (employment and finance). The quality of the reviews varied (ranging from weak to good). Gaps identified include sexual function, lower-limb lymphoedema, peripheral neuropathy, bladder and GI problems, hormonal sequelae, older cancer survivors, work impact of cancer and context-specific unmet supportive care needs. The review found a lack of standardised nomenclature for survivorship and methodological limitations. CONCLUSIONS Four main gaps in knowledge relating to the practical and physical problems associated with cancer survivorship have been identified. These are key symptoms, unmet supportive care needs, employment and older cancer survivors, and should be addressed by future research and systematic literature reviews. Work is also needed to address the nomenclature of survivorship and to improve the methodology of research into cancer survivors (including standardised measures, theoretical frameworks, longitudinal design, inclusion of older survivors and age-matched controls for comparison). The review highlighted the need for better research within the identified areas in order to improve the experiences of cancer survivors.

Knowledge, ignorance and priorities for research in key areas of cancer survivorship: findings from a scoping review

Background:Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data to help us better understand the needs of this group and to underpin evidence-based service development.Methods:Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic reviews sourced from the most common electronic databases supplemented by more recently published individual studies.Results:The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and self-management approaches remain in the early stages of evaluation.Interpretation:There has been a substantial amount of research describing many of the problems experienced by the cancer survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings that have the potential to make a major impact on patient well-being in a 5-year time scale.

What is the evidence for the use of acupuncture as an intervention for symptom management in cancer supportive and palliative care: an integrative overview of reviews

PurposeThis study aims to systematically appraise the evidence for the use of acupuncture for symptom management in cancer and supportive care and to identify recommendations for clinical practice and future research.MethodsA systematic search was carried out to identify reviews of the use of acupuncture in cancer supportive and palliative care, using MEDLINE, EMBASE, CINAHL, Web of Science, Cochrane Library, British Nursing Index, Index to Theses, Dissertations and Theses (via Proquest) and NHS evidence. Search terms included: acupuncture, cancer and symptoms. Data were extracted for analysis. Reviews were assessed for quality using a five-item checklist but were not excluded from the review on grounds of quality, in order to include a comprehensive scope of the subject.ResultsSeventeen reviews were included in the review. Evidence was found for the use of acupuncture for treatment-related nausea and vomiting. Benefit was reported for other cancer-related symptoms, including pain, fatigue, hot flushes, xerostomia, dyspnoea and anxiety. Reviewers found a paucity of rigorous trials and heterogeneity of populations, interventions, controls and outcome measures, which challenge the process of systematic review and meta-analysis.ConclusionAcupuncture should be considered for symptom management where there are limited treatment options, using current peer-reviewed guidelines and clinical reasoning. Much of the primary research reported in reviews is innovative and indicates potential benefit for people with cancer-related symptoms. The complexity of acupuncture as an intervention needs to be acknowledged in future research designs and when reviewing research findings. An iterative approach using adequate interventions, appropriate outcome measures and adherence to reporting standards is required to evaluate the efficacy of acupuncture in cancer supportive and palliative care.

A review of patient self-report tools for chemotherapy-induced nausea and vomiting

Goals of workThe assessment of chemotherapy-induced nausea, vomiting and retching (CINVR) is important and to date no review has comprehensively assessed available patient self-report tools. The aim was to undertake a review of their utility, content and psychometric properties.Materials and methodsOne thousand three hundred and forty-seven citations were identified by electronic and hand searches resulting in 24 non-duplicate abstracts, 15 articles for analysis, and six articles, which fitted the inclusion criteria. E-mail investigations discovered a further scale, resulting in seven measures.ResultsThe review highlighted the strengths and weaknesses of current tools. The multiple domains, phases and aspects of CINVR signify that the assessment tools varied markedly. The diverse requirements of research and clinicians also contribute to the variation. There was a notable disparity in the quality of scales and paucity in terms of their development and psychometric evaluation. We found that several self-assessment scales currently perceived as well-validated tools have problems in terms of their validity, reliability and appropriateness.ConclusionsThe constituents of a scale relevant for both clinical and research use were assessed and it was recommended that a modular tool focusing on two domains (nausea and vomiting); two phases (acute and delayed); measuring the aspects of occurrence, frequency, intensity alongside duration and functional interference; and antiemetic use and adverse events should be developed. Based on these recommendations, further research into an appropriate scale would minimise conceptual confusion, increase clinicians’ understanding and control of CINVR, decrease patient distress and could have equal utility in both a clinical and a research setting.

From Sedation to Continuous Sedation Until Death: How Has the Conceptual Basis of Sedation in End-of-Life Care Changed Over Time?

CONTEXT Numerous attempts have been made to describe and define sedation in end-of-life care over time. However, confusion and inconsistency in the use of terms and definitions persevere in the literature, making interpretation, comparison, and extrapolation of many studies and case analyses problematic. OBJECTIVES This evidence review aims to address and account for the conceptual debate over the terminology and definitions ascribed to sedation at the end of life over time. METHODS Six electronic databases (MEDLINE, PubMed, Embase, AMED, CINAHL, and PsycINFO) and two high-impact journals (New England Journal of Medicine and the British Medical Journal) were searched for indexed materials published between 1945 and 2011. This search resulted in bibliographic data of 328 published outputs. Terms and definitions were manually scanned, coded, and linguistically analyzed by means of term description criteria and discourse analysis. RESULTS The review shows that terminology has evolved from simple to complex terms with definitions varying in length, comprising different aspects of sedation such as indications for use, pharmacology, patient symptomatology, target population, time of initiation, and ethical considerations, in combinations of a minimum of two or more of these aspects. CONCLUSION There is a pressing need to resolve the conceptual confusion that currently exists in the literature to bring clarity to the dialogue and build a base of commonality on which to design research and enhance the practice of sedation in end-of-life care.

Consensus Building in Palliative Care: A Europe-Wide Delphi Study on Common Understandings and Conceptual Differences

CONTEXT Throughout Europe, there are major differences in the stages of development and in the types of service delivery of palliative care. Consensus on standards and norms for palliative care in Europe is needed for advocacy and health policy decision making. OBJECTIVES To provide an empirical basis for a common understanding of palliative care delivery in Europe. METHODS A two-round, online consensus Delphi study was undertaken with a multiprofessional expert panel of board members of national hospice and palliative care associations in Europe. RESULTS Respondents represented 80% of the member associations of the European Association for Palliative Care, comprising 96 experts and 35 national hospice and palliative care associations from 22 countries. High to very high consensus was found for common values and principles of palliative care (e.g., autonomy, dignity) and the provision of different levels of palliative care. Lower consensus emerged for concepts such as end-of-life care or terminal care, the demand of services and the composition of palliative care teams. The role of social workers was emphasized, but there was ambiguity about the contribution of psychologists. The need for health professionals without specialist palliative care skills to strengthen their contribution to palliative care provision was emphasized. CONCLUSION Overall, this study contributed to a higher level of consensus toward the proposed recommendations. Expert comments underlined the need for clearer definitions and specifications of terms and indicated important topics where cultural issues, geographical aspects, and the local health care setting have to be considered in palliative care.

Informing future research priorities into the psychological and social problems faced by cancer survivors: A rapid review and synthesis of the literature

PURPOSE To establish what is known regarding the psychological and social problems faced by adult cancer survivors (people who are living with and beyond a diagnosis of cancer) and identify areas future research should address. METHOD A rapid search of published literature reviews held in electronic data bases was under taken. Inclusion and exclusion criteria, and removal of duplicated papers, reduced the initial number of papers from 4051 to 38. Twenty-two review papers were excluded on grounds of quality and 16 review papers were selected for appraisal. RESULTS The psychological and social problems for cancer survivors are identified as depression, anxiety, distress, fear of recurrence, social support/function, relationships and impact on family, and quality of life. A substantial minority of people surviving cancer experience depression, anxiety, and distress or fear associated with recurrence or follow up. There is some indication that social support is positively associated with better outcomes. Quality of life for survivors of cancer appears generally good for most people, but an important minority experience a reduction in quality of life, especially those with more advanced disease and reduced social and economic resources. The majority of research knowledge is based on women with breast cancer. The longer term implications of cancer survival have not been adequately explored. CONCLUSIONS Focussing well designed research in the identified areas where less is already known about the psychological and social impact of cancer survival is likely to have the greatest impact on the wellbeing of people surviving cancer.

The effectiveness and cost-effectiveness of acupressure for the control and management of chemotherapy-related acute and delayed nausea: Assessment of Nausea in Chemotherapy Research (ANCHoR), a randomised controlled trial

BACKGROUND Chemotherapy-induced nausea and vomiting remain difficult symptoms to manage in clinical practice. As standard antiemetic drugs do not fully eliminate these symptoms, it is important to explore the adjuvant role of non-pharmacological and complementary therapies in antiemetic management approaches. Acupressure is one such treatment showing highly suggestive evidence so far of a positive effect, meriting further investigation. OBJECTIVES The primary objective was to assess the effectiveness and cost-effectiveness of self-acupressure using wristbands compared with sham acupressure wristbands and standard care alone in the management of chemotherapy-induced nausea. Secondary objectives included assessment of the effectiveness and cost-effectiveness of the wristbands in relation to vomiting and quality of life and exploration of any age, gender and emetogenic risk effects. DESIGN Randomised three-arm sham-controlled trial (Assessment of Nausea in Chemotherapy Research or ANCHoR) with an economic evaluation. Arms include the wristband arm, the sham wristband arm and the standard care only arm. Randomisation consisted of minimisation with a random element balancing for gender, age (16-24, > 24-50, >50 years) and three levels of emetogenic chemotherapy (low, moderate and high). Qualitative interviews were incorporated to shed more light on the quantitative findings. SETTING Outpatient chemotherapy clinics in three regions in the UK involving 14 different cancer units/centres. PARTICIPANTS Chemotherapy-naive cancer patients receiving chemotherapy of low, moderate and high emetogenic risk. INTERVENTION The intervention was acupressure wristbands pressing the P6 point (anterior surface of the forearm). MAIN OUTCOME MEASURES The Rhodes Index for Nausea/Vomiting, the Multinational Association of Supportive Care in Cancer (MASCC) Antiemesis Tool and the Functional Assessment of Cancer Therapy - General (FACT-G). At baseline participants completed measures of anxiety/depression, nausea/vomiting expectation and expectations from using the wristbands. RESULTS In total, 500 patients were randomised in the study arms (166 standard care, 166 sham acupressure and 168 acupressure) and data were available for 361 participants for the primary outcome. The primary outcome analysis (nausea in cycle 1) revealed no statistically significant differences between the three arms, although the median nausea experience in patients using wristbands (both real and sham ones) was somewhat lower than that in the antiemetics only group (median nausea experience scores for the four cycles: standard care arm 1.43, 1.71, 1.14, 1.14; sham acupressure arm 0.57, 0.71, 0.71, 0.43; acupressure arm 1.00, 0.93, 0.43, 0). A gender effect was evident (p= 0.002), with women responding more favourably to the use of sham acupressure wristbands than men (odds ratio 0.35 for men and 2.02 for women in the sham acupressure group; 1.27 for men and 1.17 for women in the acupressure group). This suggests a placebo effect. No significant differences were detected in relation to vomiting outcomes, anxiety and quality of life. Some transient adverse effects were reported, including tightness in the area of the wristbands, feeling uncomfortable when wearing them and minor swelling in the wristband area (n= 6).There were no statistically significant cost differences associated with the use of real acupressure bands (£70.66 for the acupressure group, £111.13 for the standard care group and £161.92 for the sham acupressure group). In total, 26 subjects took part in qualitative interviews. The qualitative data suggested that participants perceived the wristbands (both real and sham) as effective and helpful in managing their nausea during chemotherapy. CONCLUSIONS There were no statistically significant differences between the three arms in terms of nausea, vomiting and quality of life, although apparent resource use was less in both the real acupressure arm and the sham acupressure arm compared with standard care only; therefore; no clear conclusions can be drawn about the use of acupressure wristbands in the management of chemotherapy-related nausea and vomiting. However, the study provided encouraging evidence in relation to an improved nausea experience and some indications of possible cost savings to warrant further consideration of acupressure both in practice and in further clinical trials. TRIAL REGISTRATION ISRCTN87604299. SOURCE OF FUNDING This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 17, No. 26. See the HTA programme website for further project information.

Current debates on end-of-life sedation: an international expert elicitation study

PurposeEnd-of-life sedation, though increasingly prevalent and widespread internationally, remains one of the most highly debated medical practices in the context of palliative medicine. This qualitative study aims to elicit and record the perspectives of leading international palliative care experts on current debates.MethodsTwenty-one professionals from diverse backgrounds, sharing field-specific knowledge/expertise defined by significant scholarly contribution on end-of-life sedation, were recruited. Open-ended, semi-structured interviews, following a topic-oriented structure reflecting on current debates, were conducted. Results were analysed using thematic content analysis.ResultsThree main aspects of sedation were identified and discussed as potentially problematic: (a) continuous deep sedation as an extreme facet of end-of-life sedation, (b) psycho-existential suffering as an ambivalent indication for sedation and (c) withdrawal or withholding of artificial nutrition and hydration as potentially life-shortening. On these grounds, concerns were reported over end-of-life sedation being morally equivalent to euthanasia. Considerable emphasis was placed on intentions as the distinguishing factor between end-of-life acts, and protective safeguards were introduced to distance sedation from euthanasia.ConclusionsThis study shows that, despite the safeguards introduced, certain aspects of sedation, including the intentions associated with the practice, are still under question, parallels being drawn between end-of-life sedation and euthanasia. This reaffirms the existence of a grey area surrounding the two practices, already evidenced in countries where euthanasia is legalized. More clarity over the issues that generate this grey area, with their causes being uncovered and eliminated, is imperative to resolve current debates and effectively inform research, policy and practice of end-of-life sedation.

Managing end of life medications at home--accounts of bereaved family carers: a qualitative interview study.

Objective To explore how bereaved family members recall managing end of life medications when delivering care to a patient dying at home in England. Design Qualitative study. Setting Domestic homes in two contrasting areas in England. Participants 59 bereaved family carers who have delivered care to a patient who spent a minimum of 2 weeks at home prior to their death from cancer or other non-malignant condition. Cases were excluded if the place of death was: a hospice, nursing home or National Health Service (NHS) hospital. Results Participants identified a number of important concerns about managing end of life medication for the dying person at home. Although some support with medications is provided by general practitioners and nurses in the community, family carers take primary responsibility for drug administration and storage. They reported anxiety about giving correct and timely dosages, and concerns about keeping the patient comfortable without overdosing them or risking shortening their lives. In particular, they reported that certain analgesic medications, especially opioids, were considered to have a symbolic significance increasing analgesia requirements, and the use of a syringe driver was associated with deterioration and approaching death. Key barriers to managing end of life medications at home included: complex regimes; unwanted responsibility in deciding when to use ‘as needed’ medication; disagreements with professional staff, and anxiety about medication errors, especially if perceived to have implications for survival. Conclusions Family carers require more information about end of life drugs and their effects, support and training in managing medication for a dying person.