Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

OBJECTIVE: To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. METHOD: Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs. RESULTS: The main theme of 'patient work-their strategies and project management' is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and 'working the system'. Insights are given into the work carried out on patients' behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. CONCLUSIONS: The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

The networks of care surrounding cancer palliative care patients.

OBJECTIVES: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. METHOD: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was 'involved in their care' and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). RESULTS: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9-45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. CONCLUSIONS: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study.

BACKGROUND: Patients with cancer of unknown primary (CUP) have metastatic malignant disease without an identifiable primary site; it is the fourth most common cause of cancer death. OBJECTIVES: To explore patients' informal and professional carers' experiences of CUP to inform development of evidence-based, patient-centred care. METHODS: Qualitative study involving development of multiple exploratory case studies, each comprising a patient and nominated informal and professional carers, with contextual data extracted from medical records. RESULTS: 17 CUP patients, 14 informal and 13 professional carers participated in the study. Two inter-related themes distinct to CUP emerged: uncertainty and continuity of care. In the absence of a primary diagnosis, patients and informal carers experienced uncertainty regarding prognosis, possible recurrence and the primary's hereditary potential. Professional carers experienced difficulty communicating uncertainty to patients, ambiguity in deciding optimal treatment plans in the absence of trial data and a test or treat dilemma: when to discontinue seeking the primary and start treatment. Common problems with care continuity were amplified for CUP patients relating to coordination, accountability and timeliness of care. The remit of multidisciplinary teams (MDTs) often excluded CUP, leading to "MDT tennis" where patients were "bounced" between MDTs. CONCLUSIONS: The experience of those with CUP is distinctive and it can serve to amplify some of the issues encountered by people with cancer. The clinical uncertainties related to CUP compound existing shortcomings in continuity of care, increasing the likelihood of a disrupted patient journey. However, while little can be done to overcome uncertainty, more could be done to address issues regarding continuity of care.

Does the 'Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

BACKGROUND: The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP's effectiveness in improving quality of care for cancer patients. METHODS: Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an 'expected' cancer death in a hospice and acute tertiary hospital. RESULTS: Following exclusions (n=53), 255 of the 725 next-of-kin agreed to participate (35.2% response rate). Overall hospice participants reported the best quality of care, and hospital participants, for whom care was not supported by the LCP, reported the worst quality of care. Multivariate analysis showed the hospice was an independent predictor for patients being treated with dignity (OR 8.46) and receiving adequate family support (OR 7.18) (P<0.0001). Care supported by the LCP and the hospital specialist palliative care team were both associated with good family support, but neither was an independent predictor. CONCLUSIONS: From the bereaved relatives' perspective, within the hospital, the LCP is effective in improving specific aspects of care, such as symptom control for dying patients. Further improvement is required, however, to attain the hospice standard of 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.

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.

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.

Deaths of children occurring at home in six European countries.

OBJECTIVES: Until now there have been no population-based European data available regarding place of death of children. This study aimed to compare proportions of home death for all children and for children dying from complex chronic conditions (CCC) in six European countries and to investigate related socio-demographic and clinical factors. METHODS: Data were collected from the death certificates of all deceased children aged 1-17 years in Belgium, the Netherlands, Norway, England, Wales (2003) and Italy (2002). Gender, cause and place of death (home vs. outside home) and socio-demographic factors (socio-economic status, degree of urbanization and number of hospital beds in the area) were included in the analyses. Data were analysed using frequencies and multivariate logistic regression. RESULTS: In total 3328 deaths were included in the analyses; 1037 (31.2%) related to CCC. The proportion of home deaths varied between 19.6% in Italy and 28.6% in the Netherlands and was higher for children dying from CCC in all the countries studied, varying between 21.7% in Italy and 50% in the Netherlands. Among children dying from CCC, home death was more likely for cancer patients and those aged over 10 years. After controlling for potentially related clinical and socio-demographic factors, differences in the proportion of home deaths between countries remained significant, with higher proportions in Belgium and the Netherlands as compared with Italy. CONCLUSIONS: Although home deaths comprise a substantial proportion of all deaths of children with CCCs, variation among disease categories and across countries suggest that considerable potential still exists for further improvements in facilitating end-of-life care in the home for those children and families who desire to be in this location.

Who visits mobile UK services providing cancer information and support in the community?

People can access a variety of sources of information and support when they have questions about cancer according to their needs. There are various sources of information and support for cancer beyond the health-care setting. In this study, we set out to assess reasons for visiting two mobile cancer information and support services in the UK during 2006. Data were collected about each visitor by staff on the mobile services. The two mobiles travelled to 109 UK locations over a 7-month period. Fifty-nine per cent of visitors were women. Thirty-one per cent of visitors had (had) cancer; very few were still undergoing treatment. For 95% of visitors the visit had been spontaneous rather than pre-planned, and 89% of visits lasted <15 min. Most visitors required information or support for themselves, but a third requested information for someone else. A quarter of enquiries were about cancer prevention and early detection (e.g. screening, genetic testing, lifestyle). The mobiles appear to serve an important function in providing information and support in the community where visitors can drop in for an informal conversation with trained members of staff to ask questions and receive support in relation to cancer.

Supporting lay carers in end of life care: current gaps and future priorities.

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers' needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, "repair" approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: results from a survey using the VOICES questionnaire.

The importance of evaluating systematically the effectiveness of hospice care has been noted for at least 20 years. There is, however, limited evidence about whether and how the care provided to terminally ill patients by in-patient hospices in the UK differs from that provided in NHS hospitals. In this article, we, therefore, present a comparison of hospice in-patient care and hospital care for cancer patients in the UK, from the perspective of bereaved relatives who had experienced both types of care during the last 3 months of the patient's life. The Office of National Statistics drew a random sample of 800 deaths in South London in 2002, and sent the person who registered the death (the informant) a Views of Informal Carers - Evaluation of Services (VOICES) questionnaire 3-9 months after the death, with up to two reminders. There was a response rate of 48%. For this analysis, 40 cancer patients whose informant reported both a hospice in-patient admission and a hospital admission in the last 3 months of life were identified. Informants answered the same questions about each admission and responses on these were compared. There were statistically significant differences between respondents' views of hospice and hospital care on eight out of 13 variables measuring aspects of satisfaction with care, with a trend towards statistical significance on a further two: in all cases respondents rated hospice care more positively than hospital care. There were no differences in the experience of pain and breathlessness in the two settings, but respondents rated pain control by the hospice as more effective. In comparison to hospital care, from the perspective of bereaved relatives, hospice in-patient care provided better pain control, better communication with patients and families, and better medical, nursing and personal care, which treated the patient with more dignity. Further research is needed to confirm these findings using a wider sample of in-patient hospices in the UK and including the perspectives of patients. Providing high quality care for terminally ill patients in acute hospitals remains an important challenge.

Population-based study of dying in hospital in six European countries.

This study examined the proportion of deaths taking place in hospitals in six European countries in relation to demographic, epidemiologic and healthcare factors. Retrospective analyses were performed on a database integrating death certificate data of all deaths in 2002 in Sweden and 2003 in Belgium, England, Scotland, the Netherlands and Wales (N = 891,780). Data were linked with regional healthcare statistics. Of all deaths, from 33.9% (the Netherlands) to 62.8% (Wales) occurred in hospital. Large country differences in hospital deaths were partly explained by the availability of care home and hospital beds. Differences between countries were strikingly large in older patients and cancer patients. Older patients had a higher probability of dying in hospital in Sweden, Scotland, England and Wales than in Flanders and, in particular, in the Netherlands. Cancer patients often died in hospitals in Sweden but less frequently so in the Netherlands and England. Country differences in the proportion of patients dying in hospital are only partly the result of differences in health care provision, and are in particular larger for certain patient categories, suggesting country-specific end-of-life practices in these categories. These findings can contribute to rational public health policies aimed at reducing hospital deaths.

Palliative care in stroke: a critical review of the literature.

The aim of this literature review was to identify the palliative care needs of stroke patients. Stroke results in high levels of mortality and morbidity, yet very little is known about the nature and extent of palliative care services that are available to this patient group, and the ways in which such services could be delivered. A critical review of the international literature found only seven papers that attempted to identify the palliative care needs of patients diagnosed with stroke. The results of the review showed that the preferences of stroke patients and their families in relation to palliative care services are largely unknown. The review also indicated the paucity of data in regard to the distinction between provision of palliative care services for patients who die in the acute phase of stroke and for those patients who die later. Establishing reliable assessments of need are central to designing and implementing effective interventions and further research is required in this area. Further data on how the input of palliative care experts and expertise could be of benefit to patients, and the most effective ways these inputs could be targeted and delivered is required.

Symptom management in patients with established renal failure managed without dialysis.

Increasing numbers of patients with chronic kidney disease Stage 5 (GFR <15ml/minute) are being managed without dialysis, either through their own preference or because dialysis is unlikely to benefit them. This growing group of patients has extensive health care needs. Their overall symptom burden is high, and symptom prevalence matches or exceeds that in other end of life populations, both with cancer and other non-cancer diagnoses. These symptoms may often go unrecognised and under-treated. Regular symptom assessment is necessary, together with pro-active management of identified symptoms. Pain can be managed using the principles of the World Health Organisation analgesic ladder. Not all opioid medications are recommended for these patients. Paracetamol, tramadol, and fentanyl are the most appropriate medications for steps 1, 2 and 3 respectively. There is limited evidence on the use of buprenorphine, oxycodone and hydromorphone. Methadone is safe but should only be prescribed by a clinician experienced in its use. Morphine and diamorphine are not recommended because of metabolite accumulation. Pruritus is also challenging to manage. The evidence for pharmacological interventions to alleviate pruritus is summarized, and a pragmatic approach to management suggested. Emollients, capsaisin cream, antihistamines, thalidomide and ondansetron may be helpful, according to the extent and pattern of pruritus. Symptoms may frequently be due to co-morbid conditions, not renal disease itself, and managing them is difficult because of the constraints on the use of medication which kidney failure imposes. Collaboration between renal and palliative specialists can help identify ways to achieve best care for these patients.

The effect of noninvasive ventilation on ALS patients and their caregivers.

BACKGROUND: Noninvasive ventilation (NIV) reduces mortality and improves some aspects of quality of life (QoL) in ALS. However, concerns remain that progressive disability may negate these benefits and unnecessarily burden caregivers. METHODS: Thirty-nine patients requiring NIV were offered treatment. Twenty-six were established on NIV, but 13 declined or could not tolerate NIV. Fifteen patients without respiratory muscle weakness (RMW) but with similar ALS severity and age were studied in parallel. Caregivers of 21 NIV, 7 untreated, and 10 patients without RMW participated. Patients and caregivers had detailed QoL measurements for 12 months. NIV patients underwent cognitive testing before and after treatment. RESULTS: RMW correlated with lower QoL. The median survival of untreated patients (18 days; 95% CI 11 to 25 days) was shorter than for NIV patients (298 days; 95% CI 192 to 404 days) and non-RMW patients (370 days; 95% CI 278 to 462 days; log rank test [2 df] = 81, p = 0.00001). A wide range of QoL measures improved within 1 month of starting NIV, and improvements were maintained for 12 months. QoL of non-RMW patients declined as RMW progressed. Caregivers of NIV and non-RMW patients showed similar increases in burden, but NIV patient caregivers developed a deterioration in the Short Form-36 Vitality score. No improvements were found on measures of learning and recall in the NIV patients. CONCLUSIONS: Respiratory muscle weakness has a greater impact on quality of life (QoL) than overall ALS severity. Noninvasive ventilation (NIV) improves QoL despite ALS progression. NIV has no impact on most aspects of caregiver QoL and does not significantly increase caregiver burden or stress.

Attitudes of Danish doctors and nurses to palliative and terminal care.

BACKGROUND: The WHO definitions of palliative care have been adopted in Denmark and implemented in The National Guidelines from 1999, but service developments have been very slow and not according to the recommendations. Attitudes to palliative care of Danish doctors and nurses may in part account for this. OBJECTIVE: To assess the attitudes to issues related to palliative care of doctors and nurses in a Danish county hospital and the related primary care services. DESIGN: Cross-sectional survey using a mailed, self-administered questionnaire answered anonymously. PARTICIPANTS: Nurses and doctors employed in a county hospital in Denmark, homecare nurses and general practitioners from the related primary care services. OUTCOME MEASURES: The responses from the groups were compared by chi2 statistics (where ordinal variables with chi2 for trend). Data were analysed using SPSS 10.0. RESULTS: 347 responded, response rate 76%. Eighty-one per cent of all respondents were currently caring for terminally ill patient(s), 94% had done so within the last six months. Hospital doctors see more terminally ill patients than GPs (P = 0.002). Comparison of doctors (both hospital and GPs) with nurses showed that nurses were more likely to definitely agree that palliative/terminal care was a rewarding part of their work (61% 'definitely agree' versus 30%), and they were less likely to prefer to leave care of these patients to others (4% 'definitely/probably agree' versus 9%). Nurses reflected more on existential matters (80% 'definitely/probably agree' versus 63%) and were more likely to agree that dealing with a dying patient made them aware of their own feelings regarding death (97% 'definitely/probably agree' versus 80%). Only 7% of all respondents reported 'being an active member of a religious community'. Ninety-two per cent of all respondents agreed that doctors play a key role in reducing the suffering of dying patients, but 59% of nurses versus 9% of doctors 'definitely/probably agree' that 'it is primarily the task of nurses to deal with patients reactions to death'. There were significant differences between hospital doctors and GPs, with the former less likely to agree that palliative and terminal illness is rewarding, more likely to leave care of dying patients to others, and more likely to 'probably' or 'definitely agree' that it is more satisfying to work with patients who will improve. Home care nurses reflected more on existential matters than their hospital colleagues, and were more likely to 'definitely agree' that palliative/terminal care is rewarding. Differences between groups seemed to be due to profession (doctor versus nurse) and setting (hospital versus community) rather than age or gender. CONCLUSION: These findings suggest that in Denmark nurses demonstrate more positive attitudes to the care of palliative/terminally ill patients than doctors, and that attitudes amongst doctors and nurses working in the community are more positive than those of the colleagues in hospitals. There is currently little education in the principles and practice of palliative care in Denmark. These findings will inform the development of appropriate palliative care education for doctors and nurses working both in the hospital and in the community in Denmark. They also raise the possibility that part of the inertia in the development of palliative care in Denmark is related to the lack of education and, in particular, to the need of support for doctors and nurses providing terminal care so they are enabled to be more reflective on the care they currently provide. There is evidence that education in palliative care can change health professionals' attitudes to palliative and terminal care, and this now needs to be investigated in Denmark.

Older patients' experiences of treatment for colorectal cancer: an analysis of functional status and service use.

Age and ageing are an important part of the context within which the care and treatment of people with cancer is provided. More information is needed about the effects of cancer treatment on the lives of older people following inpatient care. We conducted a 3-year study in which older people with colorectal cancer completed a detailed questionnaire on multidimensional function and service use before and after elective treatment. Here we present an analysis of changes in functional status and service use over the pre- to post-treatment period, and set out a detailed picture of older people's experiences before and after treatment. In total, 337 patients with colorectal adenocarcinoma aged 58-95 years were interviewed before treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), Rotterdam Symptom Checklist (RSCL) and a severity of morbidity score. Study end points were defined as post-treatment functional status, symptom distress, severity of morbidity and frequency of service use. Pre- and post-treatment data were compared using matched analyses. Logistic regression was used to assess associations between age and the main outcome measures, and frequency of service use after treatment was compared between age groups using the chi2 test. Overall, patients experienced both positive and negative outcomes following treatment. It was notable that patients aged > or = 75 years showed improvement in only one of the principal outcome measures. Patterns of service use following treatment suggest that support at home is a key issue for patients. With the exception of nursing care, however, help at home is provided on a majority of occasions by families themselves. This raises important questions about how much preparation patients and families receive or would like before they leave hospital after treatment for cancer. A collaborative, family-centred approach to meeting people's needs is called for in the months following inpatient care.

Domiciliary chemotherapy with gemcitabine is safe and acceptable to advanced non-small-cell lung cancer patients: results of a feasibility study.

A study was conducted to investigate the feasibility and acceptability of administering single-agent gemcitabine to patients with advanced non-small-cell lung cancer (NSCLC) in their own homes. Gemcitabine is an active agent in NSCLC with a good toxicity profile and lends itself to this type of investigation. A total of 24 patients were studied; as only one patient required gemcitabine to be changed from home administration to hospital administration, domiciliary gemcitabine is feasible. A total of 249 injections of gemcitabine were given, the mean number of courses being 3.5, range 1-6. The gemcitabine was given at 1000 mg m(-2) on days 1, 8 and 15, the courses being repeated every 28 days. All patients received their first course in hospital and in total 147 were given at home and only 14 in hospital on courses 2-6. Furthermore, both the patients and carers reported positively on the use of domiciliary gemcitabine and preferred it over hospital administration. There was no evidence of increasing burden to community services during the domiciliary chemotherapy. Further studies investigating this approach are warranted.

Perspectives on symptom control in patients receiving community palliative care.

To remain at home, terminally ill cancer patients need good symptom control and support from informal carers. Few studies have explored the influence of informal carers on symptom control and vice versa. This qualitative case study was carried out in a specialist palliative care service (SPCS) to explore the reasons why patients were admitted for inpatient care. Ten patients were systematically selected and the main carer and health professionals involved in their care were invited to participate. Semi-structured, audiotape recorded interviews were conducted and a thematic analysis performed on the transcripts, using the 'Framework' approach. The results highlight the vital role that carers play in the assessment and management of symptoms in the community. However, carers reported difficulties in knowing what to monitor, how to interpret symptoms accurately and when to inform a professional. It was also reported that medication was not taken as it was prescribed and a number of reasons were given.

Treatment decisions in older patients with colorectal cancer: the role of age and multidimensional function.

The aim of the study was to investigate the role of age and multidimensional functional status in treatment decisions in older patients with colorectal cancer. Three hundred and thirty-seven patients aged 58-95 years with adenocarcinoma of the colon or rectum were interviewed before and after treatment using the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), a self-reported severity of morbidity scale, and the Rotterdam Symptom Checklist (RSCL). The OMFAQ rates five dimensions of function: social resources, economic resources, mental and physical health and self-care capacity. The likelihood of patients with Duke's C colorectal cancer receiving adjuvant chemotherapy decreased significantly with age (P = 0.001, trend). Differences in treatment received were not explained by differences in morbidity, economic, mental or physical function, self-care capacity, or any of the RSCL measures. After controlling for age, Duke's C patients who received adjuvant chemotherapy were less impaired in social resources than Duke's C patients who did not (P = 0.06). No other significant pre-treatment differences in functional status were found. Differences in age and social resources exist between patients who do and do not receive adjuvant chemotherapy. Care should be taken to ensure that patients are not excluded from treatment with known survival benefits because of their age, and the question of providing appropriate social support during adjuvant chemotherapy should be re-examined.