Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers-Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

A survey of joint and muscle aches, pain, and stiffness comparing women with and without breast cancer.

CONTEXT: Joint and muscle aches, pain, and stiffness have been reported to be a problem for some women after adjuvant breast cancer treatment; however, the extent and impact of this problem are unknown. OBJECTIVES: The purpose of this study was to determine the prevalence of this problem in comparison with women of a similar age without breast cancer. METHODS: Two hundred forty-seven women attending breast cancer follow-up clinics were invited to complete pain and quality-of-life measures. A comparison group of 274 women of similar age was drawn from women attending breast screening and benign breast clinics. Prevalence and severity of pain were compared between the two groups. RESULTS: The mean age of all women in the study was 59 years (range 30-86 years). The median time since diagnosis of cancer was 28 months (range 2-184 months). Adjuvant treatments included radiotherapy (79%), chemotherapy (45%), and hormone therapy (81%). Sixty-two percent of women with breast cancer reported pain "today" compared with 53% of women without breast cancer (P = 0.023). Significant predictors of pain in both patient groups were cancer, age, and arthritis. For the cancer cases, significant predictors of pain were age, arthritis, taxane chemotherapy, aromatase inhibitors, and tamoxifen. Quality of life (measured by the Short Form-36) was significantly worse for women with breast cancer compared with controls and was significantly worse in the breast cancer cases with pain. CONCLUSION: Treatment with tamoxifen, taxane chemotherapy, and aromatase inhibitors for breast cancer is predictive of joint pain, which may have an impact on women's lives for some years after breast cancer.

Living into old age with the consequences of breast cancer.

PURPOSE OF THE RESEARCH: Breast cancer survival rates are improving with over 60% likely to live 20 years. As 30% diagnoses occur in women over 70 the prevalence of breast cancer survivors living into older age is increasing. The specific needs and experiences of this group have rarely been addressed. This study aimed to explore older women's experience of living with breast cancer alongside other health conditions, and to identify their information and support needs and preferences. METHODS AND SAMPLE: Data were collected from 28 semi-structured qualitative interviews and 2 focus groups (n = 14), with breast cancer survivors aged 70-90, and were analysed using thematic analysis. KEY RESULTS: These older breast cancer survivors experienced a range of long-term physical problems resulting from treatment, including poor cosmetic results and poor shoulder movements, and bras and prostheses were often unsuitable. Many were keen to preserve their body image ideal irrespective of age. Reconstruction was rarely discussed, but all would have liked this option. Older women wanted to be treated as individuals rather than uniformly as older people, with their personal physical and social needs (including co-morbidities) taken into account. They expressed a preference for information direct from health professionals. CONCLUSIONS: Many breast cancer survivors will live into advanced old age with permanent physical and emotional consequences of their treatment. Holistic and personalized assessment of needs becomes increasingly important with age, particularly with comorbidity. Effective rehabilitative care is important to reduce the impact of breast cancer into old age.

The effectiveness of patient-family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: a systematic literature search and narrative review.

CONTEXT: Cancer is widely acknowledged to impact on the whole family. Yet, we do not know if there is benefit (or harm) from patient-family carer interventions in the context of cancer care. OBJECTIVES: To report a systematic search for and narrative review of patient-family carer interventions tested in the context of cancer care for effect on symptoms and other health-related problems in patients and/or their family members. METHODS: A systematic literature search was carried out using Cochrane principles. Searches were of MEDLINE, EMBASE, PsycINFO, and CINAHL databases for reported trials of patient-family carer focused interventions. Outcomes of interest were health indicators; measures of physical, psychological, social, and quality-of-life status of the patient and/or family member(s). Limits were English language; 1998 to March 2010; and adults. Relevant information was extracted, quality assessed using the Cochrane Collaboration's tool for assessing risk of bias, and presented as a narrative synthesis (meta-analysis was not appropriate). RESULTS: The review found no empirically tested interventions for family groups (patient and two or more family members), but 22 interventions for patient-family carer partnerships (couple interventions) tested in 23 studies and reported in 27 publications. Recruitment and attrition were problematic in these studies, limiting the reliability and generalizability of their results. CONCLUSION: In the trials of cancer couple interventions included in the review, a pattern emerged of improvement in the emotional health of cancer patients and their carers when the intervention included support for the patient-family carer relationship. Further investigation is warranted.

End-stage renal disease: a new trajectory of functional decline in the last year of life.

OBJECTIVES: To determine the functional trajectory in the last year of life in end-stage renal disease managed without dialysis. DESIGN: Longitudinal cohort study of functional status over time and toward death. SETTING: Three renal units in the United Kingdom. PARTICIPANTS: Patients with Stage 5 chronic kidney disease managed conservatively (without dialysis). MEASUREMENTS: The main outcome measure was functional status, measured using the Karnofsky Performance Scale. RESULTS: Seventy-five participants (mean age 80.7, 62% response rate) recruited and followed up monthly for up to 2 years (median 8-month follow-up, range 1-23 months). Forty-nine (66%) died during follow-up. Those who died had similar distribution of age, ethnicity, primary renal pathology, and comorbidity as those still alive at study end. Analysis according to time before death revealed that functional status remained stable during the last year of life but declined steeply in the last month of life. CONCLUSION: This distinctive renal trajectory, reported here for the first time, contrasts with that previously described in other conditions. This has important clinical implications-the steep functional decline indicates that healthcare services need to be rapidly responsive to changing needs in this population as function declines in the last months and weeks of life.

What to eat when off treatment and living with involuntary weight loss and cancer: a systematic search and narrative review.

PURPOSE: The aim of this study was to report a systematic search and narrative review of the evidence base that can inform dietary advice for patients off treatment living with cancer cachexia syndrome (CCS). METHODS: Searches were conducted in MEDLINE, EMBASE, PsycINFO and CINAHL databases for publications about diet and cancer patients off treatment with symptoms of CCS. The following limits were applied: English language, from September 1998 to September 2008 and adults. In addition, a hand search included the reference lists of papers identified. Seven hundred and eighteen abstracts were assessed against inclusion/exclusion criteria and 88 were selected for full text independent examination by two researchers. Information from 48 papers was extracted, quality assessed, thematically analyzed and presented as a narrative synthesis. RESULTS: Two dominant perspectives emerged on what should be eaten by weight-losing cancer patients. The majority of authors advocated a nutrient-dense diet, facilitated by nutritional counselling. The alternative approach was to advise the patient to 'eat what they want'. There is little robust evidence to justify either approach as able to deliver on the range of physical and psychosocial objectives that they aim to achieve. CONCLUSION: A new model for the delivery of nutritional care may benefit cancer patients (off treatment) living with weight loss. The proposed model integrates the two identified perspectives to facilitate optimal food intake taking into account the patient's (1) disease symptoms and treatment side effects (2) emotional adaptation to illness and (3) social circumstances. Research is needed to establish which of these obstacles to eating can be changed for which patient groups to improve patient outcomes.

The deliverability, acceptability, and perceived effect of the Macmillan approach to weight loss and eating difficulties: a phase II, cluster-randomized, exploratory trial of a psychosocial intervention for weight- and eating-related distress in people with advanced cancer.

CONTEXT: Up to 80% of people with cancer will develop weight loss and anorexia during the advanced stages of the disease. The Macmillan Weight and Eating Studies (2000-2009) have used the Medical Research Council complex interventions framework to develop the first psychosocial intervention for weight- and eating-related distress (WRD and ERD) in people with advanced cancer and their carers: The Macmillan Approach to Weight and Eating (MAWE). OBJECTIVES: This article reports the findings of a Phase II trial of MAWE that investigated its deliverability, acceptability, and patient-perceived effect on WRD and ERD. METHODS: The Phase II trial, conducted in 2006-2007, was of cluster-randomized design, with two community palliative care teams randomized to different arms. It used mixed methods to compare an intervention group (n=25), the MAWE group, which was supported by MAWE-trained clinical nurse specialists, with a group that received usual care (n=25), the control group. RESULTS: MAWE was deliverable in clinical practice and acceptable to patients. Unplanned exposure of the MAWE group to the intervention before an initial measure of WRD and ERD proved problematic to the trial process. Despite this, quantitative and qualitative analyses indicate that MAWE does not exacerbate WRD and ERD and may help patients with advanced cancer live with the weight loss and anorexia that are the symptoms of cancer cachexia syndrome. CONCLUSION: A follow-on randomized controlled trial of MAWE is warranted but should be of a revised design.

Experiences of hospital care reported by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES questionnaire.

AIM: This paper is a report of a study conducted to explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting. BACKGROUND: There is limited research about how best to meet the needs of those who die from stroke. A thorough understanding of the determinants of satisfaction with end of life care is crucial for effective service provision to increase awareness of the needs of dying patients. METHODS: During a six-month period in 2003, a population-based survey of bereaved relatives of patients after stroke was conducted using a stroke-specific version of the Views of Informal Carers Evaluation of Services postal questionnaire (183 informants, response rate 37%). The sub-sample included those informants who reported that the deceased person had died in an institutional setting (91%, n = 165). The analysis was divided into two phases: univariate (Pearson chi-square test) and multivariate phase (logistic regression). RESULTS: Logistic regressions showed that discussing any worries about the treatment of the deceased person and feeling that the doctors and nurses knew enough about their condition were predictors of satisfaction with doctors and nurses in the last 3 months of life. Meeting the personal care needs of the deceased person, being involved in decisions and feeling that the deceased person died in the right place were predictors of satisfaction with care in the last 3 days of life. CONCLUSION: End of life care needs to address the individual needs of patients who die from stroke and those close to them. This study shows that individualised end of life care increases satisfaction and, although the data reported in this paper reflect care in 2003, there is no more recent evidence that contradicts this important overall finding.

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire.

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.

Symptoms in advanced renal disease: a cross-sectional survey of symptom prevalence in stage 5 chronic kidney disease managed without dialysis.

BACKGROUND: Numbers of patients with stage 5 chronic kidney disease (CKD) managed conservatively (without dialysis) are increasing steadily but prevalence and severity of symptoms in this population are not yet known. AIM: To describe symptom prevalence, symptom severity, and total symptom burden in patients with stage 5 CKD managed conservatively. METHOD: A cross-sectional survey of patients with stage 5 CKD managed conservatively, in three U.K. renal units. Symptoms were assessed using the patient-completed Memorial Symptom Assessment Scale Short Form (MSAS-SF), with additional renal symptoms. RESULTS: Sixty-six patients were recruited (response rate, 62%), with mean age 82 years (standard deviation [SD] +/- 6.6), and mean estimated glomerular filtration rate 11.2 mL/min (SD +/- 2.8). Symptoms reported by more than one third or 33% of patients were (95% confidence intervals shown in parentheses): lack of energy, 76% (66%-84%); pruritus, 74% (65%-82%); drowsiness, 65% (54%-74%); dyspnea, 61% (50%-70%); edema, 58% (47%-66%); pain, 53% (42%-63%); dry mouth, 50% (39%-60%); muscle cramps, 50% (39%-60%); restless legs, 48% (38%-58%); lack of appetite, 47% (37%-58%); poor concentration, 44% (34%-54%); dry skin, 42% (32%-53%); sleep disturbance, 41% (32%-51%); and constipation, 35% (26%-45%). Mean number of symptoms reported on MSAS-SF was 11.58 (SD +/- 5.2), with an additional 2.77 (SD +/- 1.7) renal symptoms. Symptoms were also most severe in the more prevalent symptoms. Pain was an exception, with disproportionately greater severity (32% of all patients reported moderate/severe pain). CONCLUSION: This study demonstrates that patients with stage 5 CKD have considerable symptom control needs, similar to advanced cancer populations, but with different patterns of individual symptoms and severity, particularly pain. Implications for palliative care, hospice, and nephrology services in planning and providing care are discussed.

The value of cognitive interviewing techniques in palliative care research.

BACKGROUND: In answering questionnaires, research participants undertake complex cognitive processes, including understanding/interpreting questions, retrieval of information from memory, decision processes to estimate answers and response formulation. Cognitive interviewing techniques are widely used in large surveys, to improve questionnaires by understanding these processes, but their use is less familiar in other areas of palliative research. AIM: This study applied cognitive interviewing techniques, alongside standard piloting, to refine a questionnaire for survey of symptoms in end-stage renal disease patients. METHODS: Ten consecutive renal patients were invited to undertake a cognitive interview, while completing a questionnaire comprised of the Memorial Symptom Assessment, Geriatric Depression and Palliative Care Outcomes Scales. Interviews were conducted using 'think-aloud' and concurrent probing techniques, and recorded, transcribed and analysed using content analysis. RESULTS: Nine interviews were completed. A variety of cognitive problems were identified, including legibility/format, comprehension of specific words/phrases, inapplicability of some questions, response estimation and difficulties caused by combining instruments. These were categorized, using Tourangeau's information processing model, and used to refine the symptom questionnaire. CONCLUSION: Cognitive interviewing was able to helpfully identify the range and depth of difficulties with questions, to a greater degree than with standard piloting. It may be of particular benefit when instruments are used in different combinations, or applied to new study populations. Wider use of these techniques in palliative research is recommended.

A research study to identify facilitators and barriers to outcome measure implementation.

AIM: To identify facilitators and barriers to implementing outcome measures. METHODS: An action-research approach within a hospice and nursing home was used. Staff took part in semistructured interviews pre- and post-implementation of the Palliative Care Outcome Scale (POS), completed diaries and participated in monthly meetings. FINDINGS: Qualitative content analysis identified barriers to implementation including: a top-down decision-making approach; outcome measures perceived as time-consuming to use; limited resources for data analysis; and a lack of knowledge of the importance of outcome measures. Facilitators to successful implementation include: involving all staff in decisions about implementation; and using a measure that can be adapted to organization needs and clinical practice. The benefits of using the measure are rapidly noticeable. CONCLUSIONS: Given the need to evaluate services and the role outcome measures can have within clinical governance, this article indicates methods by which measures may be more successfully implemented.

Feeding back survey research findings within palliative care. Findings from qualitative research.

The feedback of research findings to practitioners and policy makers is an important component of palliative care research. Little is, however, understood about professionals' views on the ways research findings should be fed back. This study used semi-structured telephone interviews with a vignette to understand professionals' views on the feedback of survey research findings within palliative care. Content analysis of data uncovered a range of issues professionals emphasised as important to consider. These issues are discussed within the context of existing literature in order to raise the profile of research feedback within palliative care.

A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care.

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.

A national survey of health professionals and volunteers working in voluntary hospices in the UK. II. Staff and volunteers' experiences of working in hospices.

In this paper we report findings of a 1999 nationally representative survey of independent hospices in the UK, focusing on hospice staff and volunteers' experiences of working in hospices. Nineteen of 25 sampled services participated, and these differed little in terms of service provision, size and region from the total sample of 175 services. A response rate of 70% for randomly sampled hospice staff and volunteers was achieved (n=504). There were significant intergroup differences (doctors, nurses, nursing auxiliaries, other staff and volunteers) in participants' reported experience of working in the hospice with, for example, doctors being more likely than other groups to feel appreciated and to report receiving adequate support from hospice management. Overall, 31% of respondents wanted more support from management. Half had considered leaving the hospice (65% nurses, 60% other staff, 55% nursing auxiliaries, 40% doctors and 37% volunteers). Nurses who had considered leaving were less satisfied than other nurses with, for example, support from hospice management, and less likely to feel valued by the hospice. These results raise questions about the quality of the relationship between hospice trustees, managers and staff, and about the realities of enhancing multiprofessional teamwork in organizations where there are significant differences between staff groups in perception of, and satisfaction with, the working environment. Voluntary hospice trustees and managers face a difficult task in managing and supporting staff whilst also negotiating relationships with the NHS at a time of rapid change, and ensuring hospices' financial viability. Access to high quality leadership programmes may play an important role in ensuring voluntary hospices are characterized by effective, supportive working relationships.

Patient descriptions of breathlessness in heart failure.

OBJECTIVE: To explore patient experience of breathlessness in heart failure. METHODS: Semi-structured interviews were undertaken with 27 patients with chronic heart failure and were analysed using a constant comparative approach. RESULTS: The patients had a mean age of 69 (range 38-94 years). All had chronic heart failure with a mean left ventricular ejection fraction of 33.1%. The patient narratives suggested three dominant experiences of breathlessness, "everyday", "worsening" and "uncontrollable". These descriptions predominantly focused on physical functioning, relating to patients' ability to manage breathlessness on a day to day basis. Patients were able to accommodate everyday breathlessness, using a number of coping strategies. In most cases this experience of breathlessness came to be accepted as "normal". Worsening breathlessness was a symptom that patients were unable to manage and that prompted a hospital admission, whereas uncontrollable breathlessness was experienced as a symptom that even health care professionals struggled to control. CONCLUSIONS: Patients' descriptions of breathlessness are distinct from medical terminology and more clearly relate to physical adaptations to breathlessness. Further research is required to identify whether heart failure patients' descriptions of breathlessness are different to those of cancer patients, and to establish whether the categories generated from this data set are applicable to other heart failure patients in other settings.

Assessing palliative care outcomes for people with motor neurone disease living at home.

A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.

What methods do stakeholders prefer for feeding back performance data: a qualitative study in palliative care.

OBJECTIVE: To investigate the opinions of stakeholders (service commissioners and providers) on how performance data should be presented, in order to develop effective feedback methods to facilitate the use of these data in decision making. DESIGN: A qualitative analysis of semi-structured face-to-face and telephone interviews. League tables and fictional box plots were presented as an illustrative guide. The themes covered in the interviews were the effectiveness of these two feedback formats, their positive and negative characteristics, and ideas for new and improved feedback mechanisms. PARTICIPANTS: Thirty-six stakeholders representing a range of clinical and non-clinical roles within palliative care and the wider health care system across a variety of statutory and non-statutory organizations from London and the West Midlands. RESULTS: Box plots were received more positively than league tables, and qualitative information was considered more appropriate than pictorial feedback. Conventional methods such as league tables and box plots were judged to lack essential information on which important decisions could be based, such as additional contextual information and the methodological assumptions of the instrument. Both feedback methods were considered useful as an impetus to further discussion. There was a consensus that feedback should be constructive and able to be adapted to the organizational realities in which UK health services function. CONCLUSION: Qualitative research was viewed as the right evidence for gaining an understanding of the quality of end of life care. Stakeholders highlighted the importance of the lay perspective, which requires approaches that illuminate the subjective meanings of patient experience.

It just didn't work: the realities of quality assessment in the English health care context.

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.