Cancer care for people with dementia: Literature overview and recommendations for practice and research.

As many countries experience population aging, patients with cancer are becoming older and have more preexisting comorbidities, which include prevalent, age-related, chronic conditions such as dementia. People living with dementia (PLWD) are vulnerable to health disparities, and dementia has high potential to complicate and adversely affect care and outcomes across the cancer trajectory. This report offers an overview of dementia and its prevalence among patients with cancer and a summary of the research literature examining cancer care for PLWD. The reviewed research indicates that PLWD are more likely to have cancer diagnosed at an advanced stage, receive no or less extensive cancer treatment, and have poorer survival after a cancer diagnosis. These cancer disparities do not necessarily signify inappropriately later diagnosis or lower treatment of people with dementia as a group, and they are arguably less feasible and appropriate targets for care optimization. The reviewed research indicates that PLWD also have an increased risk of cancer-related emergency presentations, lower quality processes of cancer-related decision making, accessibility-related barriers to cancer investigations and treatment, higher experienced treatment burden and higher caregiver burden for families, and undertreated cancer-related pain. The authors propose that optimal cancer care for PLWD should focus on proactively minimizing these risk areas and thus must be highly person-centered, with holistic decision making, individualized reasonable adjustments to practice, and strong inclusion and support of family carers. Comprehensive recommendations are made for clinical practice and future research to help clinicians and providers deliver best and equitable cancer care for PLWD and their families.

A cancer personalised activity and lifestyle tool (CAN-PAL): A codesign study with patients and healthcare professionals.

AIMS: To codesign a cancer personalised activity and lifestyle tool (CAN-PAL) based on an existing tool. To help cancer care workers support people affected by cancer to plan and integrate physical activity into lifestyles. DESIGN: Mixed-methods codesign study. METHODS: Phase 1: Focus groups with people affected by cancer (n = 10) or interviews (n = 2) to discuss suitable physical activities and adaptation of the existing tool. Data were recorded, transcribed and analysed thematically. Themes informed the design of the prototype CAN-PAL and user guide. Phase 2: Healthcare professionals considered the potential use of the CAN-PAL prototype and completed an online survey including the system usability scale and free text responses. RESULTS: Phase 1: Identified suitable physical activities and four themes were identified including: Capability, benefits, barriers and resources which informed the prototype CAN-PAL and user guide. Phase 2: The user survey was completed by 12 healthcare professionals. Median (range) system usability scale was 80 (50-95) (best score 100), scores >68 indicate good or better usability. Themes from the free text comments included strengths, amendments, considerations and limitations. Results were used to finalise CAN-PAL and the user guide. CONCLUSION: The codesigned CAN-PAL tool had good usability. Further work is needed to evaluate the impact of CAN-PAL on activity levels and behaviour in people affected by cancer. RELEVANCE TO CLINICAL PRACTICE: People affected by cancer need support to undertake physical activity. The purpose of CAN-PAL is to assist cancer care workers to support people affected by cancer to plan and integrate physical activity into lifestyles. PATIENT OR PUBLIC CONTRIBUTION: Public partners considered the findings from Phase 1 and 2 and informed the design of the prototype, final CAN-PAL and user guide and coauthored the paper. REPORTING METHOD: The study adhered to relevant EQUATOR guidelines; the study was reported according to the COREQ checklist.

Educational needs of self-care in cachectic cancer patients and caregivers.

PURPOSE OF REVIEW: To give an overview of what is known about the educational component of supportive care for people with cancer cachexia and their family caregivers. RECENT FINDINGS: The educational needs for self-care by people with cancer cachexia are largely unmet. There is potential for education to enable self-care that mitigates cachexia-related distress with benefit to quality of life and mitigates malnutrition/malnutrition risk with implications for treatment tolerance and outcomes. Theoretically informed approaches to cancer cachexia education for patients and their family members are needed if optimal methods for support of self-care are to be identified. The cancer workforce also needs education to have the confidence and knowledge to play a role in the cancer cachexia education of their patients. SUMMARY: To address the educational needs of self-care in cachectic cancer patients and their caregivers, there is much work to do. Healthcare professionals need to know the best educational process and methods for cachexia for supporting quality of life and to facilitate improving cancer treatment outcomes including survival.

Psychological symptoms of illness and emotional distress in advanced cancer cachexia.

PURPOSE OF REVIEW: Cachexia induces both physical and psychological symptoms of illness in patients with advanced cancer and may generate emotional distress in patients and families. However, physical symptoms of cachexia received the most emphasis. The aims of this review are to elucidate a link between systemic inflammation underlying cachexia and psychological symptoms and emotional distress, and to advance care strategy for management of psychological symptoms and emotional distress in patients and families. RECENT FINDINGS: The main themes in the literature covered by this review are psychological symptoms in patients and emotional distress in patients and families. Studies of the underlying biology of cachexia identify the role of the central nervous system to amplify tumor-induced systemic inflammation. The brain mediates a cluster of symptoms, such as sleep disruption, anxiety, cognitive impairment, and reduction in motivated behavior (notably anorexia). These are distressing to patients as well as to families. SUMMARY: There is growing recognition that holistic multimodal interventions are needed to alleviate psychological symptoms and emotional distress and to improve quality of life in patients with cancer cachexia and families. This is an approach that addresses not only physical health but also psychological, emotional, and social well being issues.

Targeted self-management limits fatigue for women undergoing radiotherapy for early breast cancer: results from the ACTIVE randomised feasibility trial.

PURPOSE: The ACTIVE intervention uses a novel fatigue propensity tool to target a behavioural fatigue self-management programme for women undergoing radiotherapy for early breast cancer. We assess feasibility and outcomes for ACTIVE. METHODS: Mixed methods comprised a randomised feasibility trial with qualitative process evaluation and a nested fatigue risk substudy. Participants at a higher risk of fatigue were allocated 2:1 to behavioural intervention or information alone. Participants at a lower risk of fatigue entered the fatigue risk substudy. Feasibility was assessed by rates of eligibility, recruitment, retention and adherence. Qualitative interviews explored acceptability of the intervention and trial processes. Measures of fatigue, anxiety, depression, quality of life and self-efficacy were self-reported before, during and 10 days, 3 weeks and 6 months after radiotherapy. Pre-treatment fatigue risk score and post-treatment fatigue were correlated. RESULTS: Fifty percent (n = 75) of eligible patients were recruited with 33 higher risk participants randomised to the trial and 42 entering the fatigue risk score substudy. Trial design and methods were feasible and acceptable with 91% of participants completing all measures according to protocol. Fatigue was clinically-significantly lower in the intervention group during, and in the weeks after, treatment compared to the control: all secondary measures favoured the intervention group. Positive group differences were not maintained at 6 months. CONCLUSION: Our targeted approach to fatigue self-management is feasible and acceptable within the early breast cancer pathway. Multiple benefits were reported by patients who received the intervention, which is worthy of further investigation. TRIAL REGISTRATION: ISRCTN 10303368. Registered August 2017. Health and Care Research Wales Clinical Trial Portfolio Registration 31419.

Nutritional care in colorectal cancer-what is the state of play?

AIM: Nutrition is associated with aetiology and impacts outcomes in colorectal cancer (CRC). This study aimed to explore nutritional symptoms and concerns of patients with CRC and CRC dietetic resource across the UK. METHODS: Study 1 is a descriptive analysis of nutrition-related measures in the ColoRectal Wellbeing (CREW) study, a prospective 5-year longitudinal cohort study of a representative sample of 872 adults with non-metastatic CRC. Study 2 is a descriptive analysis of data collected using a freedom of information request to all UK trusts/boards on dietetic resources for CRC. RESULTS: Study 1 found that 31% of CREW participants wanted more diet and lifestyle advice. At 3 months post-surgery, 10% reported poor appetite. A fifth experienced weight loss and 16% had concerns regarding weight loss 9 months post-surgery. In study 2 just 3% of hospitals providing CRC services had a dedicated CRC dietitian (hepato-pancreato-biliary, 11.1%; head and neck cancer, 14.3%). There was no dietetic outpatient follow-up of CRC patients in 72% of hospitals. CONCLUSIONS: Dietetic resource for patients with CRC is scarce even though weight loss, poor appetite and unmet needs are common and persist over time. Work is needed to embed nutritional care into the management of patients with CRC.

Using Card Games to study cultural differences in men's social talk about prostate cancer.

AIM: To report the Card Games approach used to study men's talk about their risk for prostate cancer and as a method of data collection to analyse patterns of talk among distinct cultural groups. DESIGN: A constructivist grounded theory approach using focus groups to analyse men's social talk about prostate cancer. METHODS: Data were collected using three focus groups with African-Caribbean, Somali, and White British men. The focus groups were conducted in a location of the men's choice with a focus group facilitator and observer. Four Card Games were given to the men to encourage social talk. RESULTS: The African-Caribbean men had the most democratic talk with the use of agreement and disagreement and the Somali men were the most inclusive of others and used the most humour. The White British men were competitive in their talk and the least inclusive of each other's views. CONCLUSION: The Card Games revealed differences in the pattern of talk, which provided insight into how men may use social talk to develop their understanding of prostate cancer risk. This is useful for healthcare professionals as it provides a grounding for structuring discussions with men about prostate cancer, while understanding of how risk-related knowledge may be reconstructed in social talk and interactions. IMPACT: The methodology discussed in this paper addressed the use of focus group to analyse talk of men from culturally diverse groups. The use of Card Games allowed the talk between the men to take centre stage and this allowed differences in the social talk of the men to become apparent. The use of this methodology could have an impact on approaches to researching cultural understandings of cancer risk, which may provide evidence on effective delivery of sociocultural relevant health education relating to cancer screening.

Supporting carers to manage pain medication in cancer patients at the end of life: A feasibility trial.

BACKGROUND: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. AIMS: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients' carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. DESIGN: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants' experiences of Cancer Carers Medicines Management and trial procedures. SETTING: Community settings in two study sites. PARTICIPANTS: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. RESULTS: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. CONCLUSION: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers' management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

What is important for student nurses to know about cancer treatment and care: a qualitative study of student nurses' and stakeholder perspectives.

AIMS AND OBJECTIVES: To explore the views of student nurses' and stakeholders of what is important for student nurses to know about cancer treatment and care. BACKGROUND: Worldwide, the number of people living with cancer is increasing because the population is ageing and effective cancer treatments are prolonging survival. All nurses need knowledge, skills, confidence and competence to support people living with cancer. Education is an important tool in preparing a nursing workforce that can support people affected by cancer. DESIGN: A descriptive, explorative qualitative design. METHODS: Semi-structured interviews with 12 student nurses and seven stakeholders were conducted in 2014 (a subgroup of participants in a mixed-methods study investigating an innovation in undergraduate cancer education and reported elsewhere). The interviews were audio-taped, transcribed and analysed using content analysis. RESULTS: Two key findings emerged: the benefits of learning from people affected by cancer and knowledge deficits. Students valued the opportunity to meet people affected by cancer away from a clinical environment. It gave them the opportunity to gain skills and confidence, in providing information and psycho-educational support, in a safe and facilitated context. Students and stakeholders reported blended learning (lectures and engaging with both cancer clinicians and people affected by cancer) important for developing confidence and competence in cancer care. However, at the end of their education students identified knowledge deficits in relation to cancer screening, common cancers, treatment side effects and supporting people who have been given 'bad news'. CONCLUSIONS: Collaborative working with people affected by cancer and educationalists has allowed the patient and carer experience to be placed at the centre of the undergraduate cancer education. RELEVANCE TO CLINICAL PRACTICE: This research reveals the potential importance of the coproduction of undergraduate nurse cancer education, if nurses are to understand and improve the experience of people living with cancer and beyond.

Decision making for people living with dementia by their carers at the end of life: a rapid scoping review.

BACKGROUND: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. AIM: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. DESIGN: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. RESULTS: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. CONCLUSION: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

Cancer and dementia: an exploratory study of the experience of cancer treatment in people with dementia.

OBJECTIVE: Patients with comorbid cancer and dementia have poorer outcomes than those without dementia. We observe oncology teams managing patients with dementia and memory loss and explore these patients' needs and experiences of outpatient cancer services. METHODS: A single site investigation of case study design to examine practices in four clinics using multi-methods of data collection: retrospective note review, observation, interviews, and recorded consultations. A framework analytic approach identifies themes within and across cases. RESULTS: Thirty-three clinical encounters with patients with memory loss were observed. Ten consultations were audio-recorded and 16 individuals interviewed (n = 6 patients-carer dyads, n = 1 lone patient, and n = 5 staff). Medical records were reviewed for 338 cases. Cancer referrals did not document memory health, so clinicians rely on patient/carer disclosure to identify patients with memory problems. In practice, the problem often remains hidden. Treating teams who do become aware of memory difficulties are unsure how to support patients, but marked memory loss can limit treatment options and preclude radical intent. Carers are key facilitators of successful cancer consultations and management. Their support needs are largely unrecognized. CONCLUSIONS: Training that educates cancer teams on how to identify and support individuals with memory problems before and during treatment and recognize the carer role may facilitate complex cancer care and help reduce inequalities of outcomes.

A systematic review and thematic synthesis of quality of life in the informal carers of cancer patients with cachexia.

BACKGROUND: Informal carers of cancer patients with cachexia face additional challenges to those encountered by informal carers in general because of the central role food and eating play in everyday life. Patient weight loss and anorexia, core features of cancer cachexia, are frequent causes of distress in caregivers. Identification of quality of life issues can inform the development of interventions for both caregivers and patients and facilitate communication with healthcare professionals. AIM: To identify quality of life issues that are relevant to carers of cancer patients with cachexia. DESIGN: A systematic review and thematic synthesis of the qualitative literature were conducted. Reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: PubMed, ISI Web of Knowledge, EMBASE, MEDLINE, CINAHL, PsycINFO and PsycARTICLES were searched for publications dated from January 1980 to February 2015 using search terms relating to cancer, cachexia, quality of life and carers. Papers written in the English language, featuring direct quotes from the carers of adult patients with any cancer diagnosis and cachexia or problems with weight loss or anorexia, were included. RESULTS: Five themes were extracted from the 16 identified studies. These highlighted the impact on everyday life, the attempts of some carers to take charge, the need for healthcare professional's input, conflict with the patient and negative emotions. CONCLUSION: The complexity of caring for a cancer patient with cachexia translates into a range of problems and experiences for informal carers. By addressing the impact of caring for a patient with cancer cachexia on carers, both caregiver and patient quality of life may improve.

Strategies designed to help healthcare professionals to recruit participants to research studies.

BACKGROUND: Identifying and approaching eligible participants for recruitment to research studies usually relies on healthcare professionals. This process is sometimes hampered by deliberate or inadvertent gatekeeping that can introduce bias into patient selection. OBJECTIVES: Our primary objective was to identify and assess the effect of strategies designed to help healthcare professionals to recruit participants to research studies. SEARCH METHODS: We performed searches on 5 January 2015 in the following electronic databases: Cochrane Methodology Register, CENTRAL, MEDLINE, EMBASE, CINAHL, British Nursing Index, PsycINFO, ASSIA and Web of Science (SSCI, SCI-EXPANDED) from 1985 onwards. We checked the reference lists of all included studies and relevant review articles and did citation tracking through Web of Science for all included studies. SELECTION CRITERIA: We selected all studies that evaluated a strategy to identify and recruit participants for research via healthcare professionals and provided pre-post comparison data on recruitment rates. DATA COLLECTION AND ANALYSIS: Two review authors independently screened search results for potential eligibility, read full papers, applied the selection criteria and extracted data. We calculated risk ratios for each study to indicate the effect of each strategy. MAIN RESULTS: Eleven studies met our eligibility criteria and all were at medium or high risk of bias. Only five studies gave the total number of participants (totalling 7372 participants). Three studies used a randomised design, with the others using pre-post comparisons. Several different strategies were investigated. Four studies examined the impact of additional visits or information for the study site, with no increases in recruitment demonstrated. Increased recruitment rates were reported in two studies that used a dedicated clinical recruiter, and five studies that introduced an automated alert system for identifying eligible participants. The studies were embedded into trials evaluating care in oncology mainly but also in emergency departments, diabetes and lower back pain. AUTHORS' CONCLUSIONS: There is no strong evidence for any single strategy to help healthcare professionals to recruit participants in research studies. Additional visits or information did not appear to increase recruitment by healthcare professionals. The most promising strategies appear to be those with a dedicated resource (e.g. a clinical recruiter or automated alert system) for identifying suitable participants that reduced the demand on healthcare professionals, but these were assessed in studies at high risk of bias.

How action researchers use anxiety to facilitate change in health care.

AIM: The aim of this paper is to report on the role of an action researcher in a study investigating the change process in a health service context where a new assessment clinic was developed to manage the excessive waiting list for that service. BACKGROUND: For effective organisational change in health, there is a suggestion that change agents need to be emotionally intelligent; recognising the emotional state of individuals, reconciling that with the organisational drivers and making an assessment of readiness for organisational change. Anxiety features throughout this literature and there is a suggestion that being aware of anxiety and managing anxiety is within the emotionally intelligent change agent's repertoire, but there is a gap in the literature that explains this relationship in detail. METHODS: Data were generated to investigate the discrete nature of the role of the action researcher during this organisational change that spanned two years, through three methods: participant observations in the field captured in field notes (n = 72); observations of team meetings that had been recorded and transcribed (n = 13); interviews with key informants pre- and postintervention (n = 14); a reflexive diary one document of 8920 words (n = 1). FINDINGS: The data illuminating the interaction between the action researcher and participants were synthesised into two broad themes: how the action researcher introduced anxiety into the system; how the action researcher facilitated the participants to tolerate change anxiety. DISCUSSION/RELEVANCE TO CLINICAL PRACTICE: The findings from this study can be applied in clinical practice where change in practice is planned. Part of the requirement of a change agent in the NHS might be to be sufficiently emotionally literate to understand anxiety in the participant system and manage it to effect change.

Reflections of a team approach to involving people with dementia in research.

The article reflects on the ways in which a person-centred approach was used to ensure that people with dementia were given an opportunity to participate in research. The authors discuss three key issues-the importance of including people with dementia in research, informed consent and the possibility of accidental disclosure of diagnosis. The study was an in-depth examination of the ways in which the cancer team manages patients with memory problems and patients with dementia, and the experiences of these patients and their families in accessing outpatient cancer treatment and care in Wales. The study findings will be reported elsewhere. This article aims to add to the small body of existing knowledge within the literature that describes the experiences of researchers in actively involving people with dementia in research.

'You can't say, "what about me?" I'm not the one with cancer': information and support needs of relatives.

OBJECTIVE: The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs. METHOD: A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis. RESULTS: Information sharing and communication within families operated within a context of cancer-related uncertainty. Discussion about cancer was generally viewed as beneficial, but relatives faced dilemmas, which inhibited information exchange. Participants often devised strategies to manage the challenges faced to fulfil their needs for information and support. This was deemed important as talking about cancer allowed relatives to support patients' preferences for care, deal with practical demands and come to terms with difficult issues. Lack of information was perceived to affect the quality of care participants could provide. CONCLUSION: Participants did not always want to know everything about the patient's illness, suggesting the importance of tailoring information to individual needs. Offering a range of different kinds of support directly to relatives may improve patient care and emotional well-being.

A mixed-methods qualitative research study to develop a complex intervention for weight loss and anorexia in advanced cancer: the Family Approach to Weight and Eating.

BACKGROUND: Worldwide, most people with incurable cancer experience weight loss and anorexia. These symptoms can distress patients and their family caregivers. Interventions that take account of the relationship between patient and family caregiver may improve outcomes for both members of this dyad. AIM: To report an example of process for the development of a complex intervention, the Family Approach to Weight and Eating. DESIGN: A mixed-methods process informed by the Medical Research Council's guidelines for developing a complex intervention was used to develop a psychosocial intervention for patients with incurable cancer and weight loss or poor appetite and their family caregivers and then to test for its feasibility, acceptability and perceived benefit. SETTING: South of England in 2010/2011. PARTICIPANTS: A purposive sample of patient-family caregiver dyads under the care of a specialist community palliative care team. Patient participants had incurable cancer and were cachectic or at risk of cachexia. RESULTS: The patient-family caregiver dyads comprised seven female and nine male patients (age range 41-84 years) and their carers. The emergent form of the Family Approach to Weight and Eating was found to aid family talk about food, feelings and reciprocity, without adverse consequences. Of the dyads, 15 reported benefits of the Family Approach to Weight and Eating. Three patient participants spoke of the approach evoking sadness and three carers of guilt. CONCLUSION: The Family Approach to Weight and Eating should now be tested in a pilot trial and the effect on emotional health outcomes in patients and their family caregivers evaluated.

Access, acceptance and adherence to cancer prehabilitation: a mixed-methods systematic review.

PURPOSE: The purpose of this systematic review is to better understand access to, acceptance of and adherence to cancer prehabilitation. METHODS: MEDLINE, CINAHL, PsychINFO, Embase, Physiotherapy Evidence Database, ProQuest Medical Library, Cochrane Library, Web of Science and grey literature were systematically searched for quantitative, qualitative and mixed-methods studies published in English between January 2017 and June 2023. Screening, data extraction and critical appraisal were conducted by two reviewers independently using Covidence™ systematic review software. Data were analysed and synthesised thematically to address the question 'What do we know about access, acceptance and adherence to cancer prehabilitation, particularly among socially deprived and minority ethnic groups?' The protocol is published on PROSPERO CRD42023403776 RESULTS: Searches identified 11,715 records, and 56 studies of variable methodological quality were included: 32 quantitative, 15 qualitative and nine mixed-methods. Analysis identified facilitators and barriers at individual and structural levels, and with interpersonal connections important for prehabilitation access, acceptance and adherence. No study reported analysis of facilitators and barriers to prehabilitation specific to people from ethnic minority communities. One study described health literacy as a barrier to access for people from socioeconomically deprived communities. CONCLUSIONS: There is limited empirical research of barriers and facilitators to inform improvement in equity of access to cancer prehabilitation. IMPLICATIONS FOR CANCER SURVIVORS: To enhance the inclusivity of cancer prehabilitation, adjustments may be needed to accommodate individual characteristics and attention given to structural factors, such as staff training. Interpersonal connections are proposed as a fundamental ingredient for successful prehabilitation.

A systematic review of health-related quality of life instruments in patients with cancer cachexia.

PURPOSE: Assessing the health-related quality of life (HRQOL) of cancer patients with cachexia is particularly important because treatments for cachexia are currently aimed at palliation and treatment efficacy must be measured in ways other than survival. The aim of this systematic review was to evaluate HRQOL assessment in cancer patients with cachexia. METHODS: Using guidance from the Centre for Reviews and Dissemination, relevant databases were searched from January 1980 to January 2012 with terms relating to cancer, cachexia and HRQOL for papers including adult cancer patients with cachexia or documented weight loss at baseline. RESULTS: We found one cachexia-specific instrument, the Functional Assessment of Anorexia/Cachexia Therapy, but the tool has not been fully validated, does not cover all the relevant domains and the consensus-based standards for the selection of health status measurement instruments checklist highlighted a number of weaknesses in the methodological quality of the validation study. Sixty-seven studies assessed HRQOL in cachectic or weight-losing cancer patients. Most used generic cancer HRQOL instruments, limiting the amount of useful information they provide. A modified version of the Efficace minimum data checklist demonstrated that the quality of reporting on HRQOL tool use was inadequate in many of the studies. A negative relationship between HRQOL and weight loss was found in 23 of the 27 studies which directly examined this. CONCLUSION: There is a pressing need for a well-designed HRQOL tool for use with this patient group in both clinical trials and clinical practice.

Outcomes of a nurse-delivered psychosocial intervention for weight- and eating-related distress in family carers of patients with advanced cancer.

BACKGROUND: International expert consensus is that psychosocial intervention is likely to help advanced cancer patients and their family carers affected by weight loss and poor appetite. PURPOSE: To investigate the potential for a psychosocial intervention, the Macmillan Approach to Weight and Eating (MAWE), to mitigate weight- and eating-related distress in carers of patients with advanced cancer. METHOD: A controlled before and after study was conducted with carers of advanced cancer patients living in the community in the South of England in 2006-7. It used mixed methods to compare carers exposed to MAWE (n=12) with a control group (n=14). RESULTS: Weight- and eating-related distress improved in carers exposed to MAWE. Qualitative analysis found that MAWE may help carers by providing information, reassurance, and support for self-management. CONCLUSION: This preliminary study of MAWE suggests that it provides benefits as a supportive intervention. Further testing is warranted using a more robust experimental design.