Search

Background: Recruitment and retention in clinical trials remains an important challenge, particularly in the context of advanced disease. It is important to understand what affects retention to improve trial quality, minimise attrition and reduce missing data. We conducted a qualitative study embedded within a randomised feasibility trial and explored what influenced people to take part and remain in the trial., Methods: We conducted a qualitative study embedded within a double-blind randomised trial (BETTER-B[Feasibility]: BETter TreatmEnts for Refractory Breathlessness) designed using a person-centred approach. Participants with cancer, chronic obstructive pulmonary disease (COPD), interstitial lung disease (ILD), or chronic heart failure (CHF), with a modified Medical Research Council dyspnoea scale grade of 3/4 were recruited from three UK sites. A convenience subsample completed qualitative interviews after the trial. Interviews were analysed using thematic analysis. Results were considered in relation to the core elements of person-centred care and our model of the person-centred trial., Results: In the feasibility trial 409 people were screened for eligibility, and 64 were randomised. No participant was lost to follow-up. Twenty-two participants took part in a qualitative interview. Eleven had a diagnosis of COPD, 8 ILD, 2 CHF and 1 lung cancer. The participants' median age was 71 years (range 56-84). Sixteen were male. Twenty had completed the trial, and two withdrew due to adverse effects. The relationship between patient and professional, potential for benefit, trial processes and the intervention all influenced the decision to participate in the trial. The relationship with the research team and continuity, perceived benefit, and aspects relating to trial processes and the intervention influenced the decision to remain in the trial., Conclusions: In this feasibility trial recruitment targets were met, attrition levels were low, and aspects of the person-centred approach were viewed positively by trial participants. Prioritisation of the relationship between the patient and professional; person-centred processes, including home visits, assistance with questionnaires, and involvement of the carer; and enabling people to participate by having processes in line with individual capabilities appear to support recruitment and retention in clinical trials in advanced disease. We recommend the integration of a person-centred approach in all clinical trials., Trial Registration: ISRCTN Registry, ISRCTN32236160. Registered on 13 June 2016.

Palliative care (PC) concurrent with usual oncology care is now the standard of care that is recommended for any patient with advanced cancer to begin within 8 weeks of diagnosis on the basis of evidence-driven national clinical practice guidelines; however, there are not enough interdisciplinary palliative care teams to provide such care. How and what can an oncology office incorporate into usual care, borrowing the tools used in PC randomized clinical trials (RCTs), to improve care for patients and their caregivers? We reviewed the multiple RCTs for common practical elements and identified methods and techniques that oncologists can use to deliver some parts of concurrent interdisciplinary PC. We recommend the standardized assessment of patient-reported outcomes, including the evaluation of symptoms with such tools as the Edmonton or Memorial Symptom Assessment Scales, spirituality with the FICA Spiritual History Tool or similar questions, and psychosocial distress with the Distress Thermometer. All patients should be assessed for how they prefer to receive information, their current understanding of their situation, and if they have considered some advance care planning. Approximately 1 hour of additional time with the patient is required each month. If the oncologist does not have established ties with spiritual care and social work, he or she should establish these relationships for counseling as required. Caregivers should be asked about coping and support needs. Oncologists can adapt PC techniques to achieve results that are similar to those in the RCTs of PC plus usual care compared with usual care alone. This is comparable to using data from RCTs of trastuzamab or placebo, adopting what was used in the RCTs without modification or dilution.

Objective: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences., Methods: A population-based cross-national telephone survey using random digit dialling in seven countries was conducted., Results: Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left., Conclusions: The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required., (Copyright © 2013 John Wiley & Sons, Ltd.)

Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Purpose: Tailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers' experiences., Method: Single, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care., Results: Carers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient's condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems., Conclusions: Considering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.

Background: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally., Methods: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying., Results: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal)., Conclusions: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Purpose of the Review: Breathlessness in patients with advanced cancer is common. It remains a difficult symptom to improve despite recent advances in cancer treatment and the increasing evidence available. Patients and carers experience a high level of distress from this frightening symptom. There is a greater volume of evidence to guide the management of breathlessness accompanying advanced non-malignant disease, as opposed to malignant disease, as most research has been conducted in this group. This article reviews the management of breathlessness in patients with cancer., Methods: A systematic review of the literature in this area was completed. The results of the research work carried out by co-authors were also reviewed. The following databases were searched: MEDLINE, CINAHL, EMBASE, PsycINFO, the Cochrane Library. This search strategy was supplemented by hand-searching references in relevant palliative care text books and by searching relevant websites., Key Results: Pharmacological and non-pharmacological measures to alleviate breathlessness are discussed in this paper. Non-pharmacological approaches are discussed in detail as these are currently the most effective for the greatest number of patients., Conclusions: The cause of breathlessness in advanced cancer patients is usually multifactorial. A combination of pharmacological with non-pharmacological approaches is essential to manage breathlessness. Breathlessness services (e.g. Breathlessness Intervention Service) can be considered to be innovative and effective models of care when provided as part of a network of services aimed at helping patients with advanced cardiorespiratory disease, including patients with advanced cancer., (Copyright © 2010 Elsevier Ltd. All rights reserved.)

Introduction: Vulnerability is a poorly understood concept in research ethics, often aligned to autonomy and consent. A recent addition to the literature represents a taxonomy of vulnerability developed by Kipnis, but this refers to the conduct of clinical trials rather than qualitative research, which may raise different issues., Aim: To examine issues of vulnerability in cancer and palliative care research obtained through qualitative interviews., Method: Secondary analysis of qualitative data from 26 black Caribbean and 19 white British patients with advanced cancer., Results: Four domains of vulnerability derived from Kipnis's taxonomy were identified and included: (i) communicative vulnerability, represented by participants impaired in their ability to communicate because of distressing symptoms; (ii) institutional vulnerability, which referred to participants who existed under the authority of others--for example, in hospital; (iii) deferential vulnerability, which included participants who were subject to the informal authority or the independent interests of others; (iv) medical vulnerability, which referred to participants with distressing medical conditions; and (v) social vulnerability, which included participants considered to belong to an undervalued social group. Participants from both ethnic groups populated all these domains, but those who were black Caribbean were more present among the socially vulnerable., Conclusions: Current classifications of vulnerability require reinterpretation when applied to qualitative research at the end of life. We recommend that researchers and research ethics committees reconceptualize vulnerability using the domains identified in this study and consider the research context and interviewers' skills.

Longitudinal research helps to clarify changing needs and the timing of treatments and referral but is hampered by poor recruitment and retention of participants. We explored, using semi-structured interviews in a cross-sectional design, the views and preferences of patients with advanced cancer on taking part in planned longitudinal questionnaire-based research studies. Patients with advanced lung and colorectal cancer were recruited from outpatient clinics in a London hospital. Semi-structured interviews were undertaken to explore their views about taking part in a specific future questionnaire study and their preferences regarding format. In all, 20 of 47 patients initially identified were recruited. Their preferences for the planned questionnaire study were for face-to-face interviews undertaken at home from late morning onwards with recontact at a mean of 6 weeks. Fluctuating symptom control needs could result in unexpected admission to or discharge from hospital. Developing flexible and responsive recruitment procedures is vital to retain patient participation as more than one contact might be required to successfully conclude an interview.

This article describes the research strategy for the development of a computerized assessment tool as part of a European Union (EU)-funded project, the European Palliative Care Research Collaborative (EPCRC). The EPCRC is funded through the Sixth Framework Program of the EU with major objectives to develop a computer-based assessment and classification tool for pain, depression, and cachexia. A systematic approach will be applied for the tool development with emphasis on multicultural and multilanguage challenges across Europe. The EPCRC is based on a long lasting collaboration within the European Association for Palliative Care Research Network. The ongoing change in society towards greatly increased use of communication as well as information transfer via digital systems will rapidly change the health care system. Therefore, patient-centered outcome assessment tools applicable for both clinic and research should be developed. Report of symptoms via digital media provides a start for face-to-face communication, treatment decisions, and assessment of treatment effects. The increased use of electronic media for exchange of information may facilitate the development and use of electronic assessment tools and decision-making systems in oncology. In the future, patients may find that a combination of a face-to-face interview plus a transfer of information of subjective symptoms by electronic means will optimize treatment.

Pain is a common cancer-related symptom, but little research has been conducted that explores the meanings of this symptom across different ethnic groups. This study involved qualitative interviews to explore and compare the meanings of pain among 26 Black Caribbean and 19 White patients with advanced cancer. Patients were recruited from oncology outpatient clinics, a lung clinic and palliative care teams. Interview transcripts were analysed using the framework approach. A total of 23/26 Black Caribbean and 15/19 White patients reported cancer-related pain. Accounts of Black Caribbean and White patients identified pain as a 'challenge' that needed to be mastered by the individual, not necessarily by drugs and identified pain as an 'enemy' that represented an unfair attack. Two further meanings of pain emerged from Black Caribbean patients' accounts: pain as a 'test of faith' that referred to confirmation and strengthening of religious belief, and pain as a 'punishment' that was associated with wrongdoing. These meanings influenced the extent patients were able to accommodate their distress. Pain assessment needs to consider the patients' narratives that include the meanings they attribute to this symptom, and which may be governed by culture.

The aim of this review was to find the evidence for or against the use of hypnotherapy in the treatment of symptoms in terminally ill adult cancer patients. The title and abstract were evaluated following a search through Index Medicus/MEDLINE, EMBASE, CINHAHL, CancerLit, AHMED, Psychinfo, CISCOM, Cochrane and DARE. Search terms included hypnotherapy, cancer, terminal care and palliative care. Inclusion criteria included systematic reviews, randomized controlled trials, observational and prospective studies, retrospective surveys, case studies and reports. A total of 27 papers were evaluated. Two reviewers assessed the studies, one extracted the relevant data and 10% were evaluated independently by a third reviewer. The 27 papers comprised a randomized controlled trial, an observational study, a retrospective questionnaire and 24 case studies. Hypnotherapy was used to treat a variety of symptoms, including pain, anxiety and depression. The poor quality of the studies and heterogeneity of the study population limited further evaluation; further research is required to understand the role of hypnotherapy in managing symptoms.

Informal carers in cancer and palliative care are known to have high needs and psychological morbidity, yet a literature review identified few targeted interventions. This systematic review of interventions for carers of patients using home cancer and palliative care services searched Medline, CancerLit, Psycinfo and Cinahl databases. The terms used were carer(s), caregiver(s), palliative and cancer. Papers that reported interventions for adults actively providing informal care for noninstitutionalized cancer and palliative care patients were reviewed. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (10). Of these, nine were delivered solely to carers (i.e., were targeted services). Only six of the carers' interventions had been evaluated, two of these had used a randomized control trial (RCT; grades IB), three employed a single group methodology (two prospective grades IIIC and one retrospective grade IIIC) and one was evaluated using facilitator feedback. There was a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. Methodological challenges may mean alternatives to 'pure' RCTs should be considered. The current evidence contributes more to understanding feasibility and acceptability than to effectiveness. Practitioners and evaluators must prioritize the further development of intervention studies.

There is increasing evidence to suggest that patients with cancer require more information about their disease and its consequences than they receive. In an attempt to address these needs, a variety of methods have been used to facilitate the passage of information from health professionals and other cancer information sources to cancer patients and their families. These include written material, telephone help-lines, teaching and audiovisual aids. Although these efforts have been well received, little attention has been given to the effectiveness of the methods employed. The aims of this paper were to systematically review randomized controlled trials that have evaluated methods of information-giving to cancer patients and their families. Relevant literature was identified through computerized databases, Internet cancer sites and bibliography searches. Multiple reviewers independently analysed the methodological quality of the papers according to agreed criteria. From this process, 10 studies were identified. Interventions ranged from written information to audiotapes, audiovisual aids and interactive medium. Individually tailored methods such as patient care records and patient educational programmes were also reviewed. The evidence indicated that the interventions had positive effects on a number of patient outcomes, such as knowledge and recall, symptom management, satisfaction, preferences, health care utilization and affective states. This was above and beyond the usual care provision. In the majority of studies the interventions had no effect on psychological indices. Furthermore, the review highlighted that certain methods should be based on individual preferences for information rather than uniformly administered.

Data collected from six home palliative care teams in Ireland were analyzed to determine the prevalence of dyspnea in the population studied and to identify factors associated with the presence of dyspnea that might impact on future care. The prevalence of mild, moderate, or severe dyspnea, as measured by the Support Team Assessment Schedule (STAS), fell from 39% at referral in 327 evaluable patients to 23%. The presence of dyspnea at referral was positively correlated with severity of patient spiritual distress (Spearman rho = 0.110, P = 0.042) and weakness (Spearman rho = 0.105, P = 0.008) at referral. In analysis of contingency tables, dyspnea was also significantly associated with low patient (chi 2 9.5, P = 0.002) and family (chi 2 50.78, P < 0.001) well-being, high staff anxiety (chi 2 4.14, P = 0.04), male sex (chi 2 8.9, P = 0.003), a diagnosis of lung cancer (chi 2 59.88, P < 0.001), and dying in hospital rather than hospice or nursing home (chi 2 18.03, P = 0.001). In adjusting for covariates using a logistic regression analysis, however, only the presence of low family well-being, a diagnosis of lung cancer, and increased likelihood of a hospital death remained significantly associated with the presence of dyspnea at referral. These data suggest that the presence of dyspnea may be associated with increased family distress, which may influence place of death.

This study describes the characteristics of a representative sample of terminally ill cancer patients at admission to Italian palliative care programs, the rate and reasons for discontinuation of care, and survival after enrollment. All Italian palliative care units (PCUs) specifically committed to palliative care were asked to consecutively register all new patients (n = 3901) between January and June, 1995. Fifty-eight of the 62 PCUs contacted by the Steering Committee completed the study. A random sample of 589 evaluable patients was prospectively selected from the 2667 eligible patients. Patients were mostly referred by a general practitioner (31.2%) or a specialist (42.1%). Most patients (84.7%) were followed until death. Seventy-seven discontinued care because of hospital admission (6.6%), change of residence (3.9%), refusal (1.7%), or improvement (0.8%). Median survival was 37.9 days; 14.3% of the patients died within 7 days, and 15.3% lived longer than 180 days. A statistically significant association between survival and gender, cancer type, setting of the first visit, and type of unit was observed. In Italy, as in other countries with different health systems, referral of cancer patients to palliative care tends to occur late in the course of the disease. This study suggests that the process of enrollment and the duration of patients' survival in palliative care, when studied in large unselected populations, can provide important information relevant to the care of terminally ill patients.

Outcome in palliative care can be defined as patients' quality of life, quality of death and satisfaction with care. In an Italian multicentre prospectic study ('Staging') the quality of life of 571 palliative care patients with advanced cancer disease was assessed since the beginning of palliative care till the end of the study. We analyzed the tissue of quality of life missing data and the possibility to input the missing quality of life evaluation through the quality of life evaluation made by a proxy (doctor, nurse). The greatest functional impairment and an increasing level of some symptoms (fatigue, general malaise, emotional status) were observed during the last two weeks of life, whereas for other symptoms (gastro-intestinal, pain) some degree of control was possible. The quality of life analysis for palliative care patients should consider the different response of different quality of life components to the palliative care intervention.

As part of a large multicentre study on palliative care units in Italy, carried out between 1 January and 30 June 1995, we describe the place, circumstances and 'quality of death' of patients admitted to home palliative care. Data presented refer to 401 patients (67% of the 601 patients randomly selected for evaluation). Of these 401 patients 303 (76%) died at home. According to the Support Team Assessment Schedule (STAS) pain was fairly well controlled during the final week of life, while the control of other symptoms appeared to be less satisfactory. Invasive procedures were undertaken on 56% of patients, while in hospital the percentage increased to 75%. Twenty-five per cent of patients were totally pharmacologically sedated during the final 12 h of life. Neither the number of symptoms nor other factors were apparently associated with the decision to sedate the patient. The wide variations in the frequency of sedation among centres suggest that the choice to sedate the patient may reflect the provider's behaviour or services' policy rather than the patients' preference or needs. The definition of common criteria and guidelines for sedation of patients should be one of the topics for discussion among palliative care teams.

Background: This study investigated whether indices of social deprivation were related to the proportion of cancer patients who died at home., Methods: Data were derived from death registrations for all cancer deaths 1985-1994 in England. Two indices of deprivation (Underprivileged Area Score (UPA), or Jarman, and Townsend scores) were calculated for each electoral ward; 1991 Census data were used. The scores use combinations of variables, including the percentage in overcrowded homes, the percentage of elderly people living alone, the percentage of one-parent families, etc. A high score indicates more deprivation. The main outcome measures were the proportion (in five and ten year averages) of cancer deaths which occurred at home, calculated for every electoral ward (with populations usually ranging from 5000 to 11,000). Spearman rho was used to test for correlations between the proportion of cancer deaths at home and deprivation score. Electoral wards were categorized by deprivation score into three groups of equal size and analysed over 10 years. Multivariate analysis was used to determine the relative association of different patient based and electoral ward variables with cancer death at home. p < 0.05 (two-tailed) was taken as significant., Results: There were over 1.3 million death registrations from cancer in the 10 years. The proportion who died at home was 0.27, in hospital 0.47, and other setting 0.26. There were wide variations (0.05-0.75) in the proportion of people who died at home in different electoral wards. Small inverse correlations were found between the percentage who died at home and the UPA (-0.35; p < 0.001) and Townsend (-0.26; p < 0.001) scores. The correlations were greatest in North Thames (-0.63, UPA) and smallest in West Midlands (-0.20, UPA). The proportion of home deaths for the different bands of deprivation were: 0.30 (low deprivation), 0.27 (middle deprivation) and 0.24 (high deprivation). Plotting the trends over 10 years suggests no change in this relationship. Multiple regression analysis predicted several ward and patient characteristics and accounted for 30 per cent of the variation. Increased age (patient variable), Jarman score and ethnic minorities (both ward variables) were associated with fewer patients dying at home. Being male and having cancer of the digestive organs were associated with home death., Conclusion: There are wide variations in the percentage of cancer deaths at home in different electoral wards. Social factors are inversely correlated with home cancer death, and may explain part of this variation. Home care in deprived areas may be especially difficult to achieve.

Although studies have found that 50-70% of cancer patients would prefer to die at home, there has been a trend towards the hospitalization of the dying in many countries. No study has attempted to analyse the changes in place of death in detail. The aim was to analyse the 10-year trends in place of death of cancer patients, by region and by diagnosis, within England. To do this, data on the place of death and patients' characteristics were derived from death registrations for all cancer deaths between the years 1985-94. We examined trends in the place of death for the whole of England, for each region separately and for the main cancer diagnoses. The results show that there were over 1.3 million death registrations from cancer during the 10 years. The mean age increased over the period from 69.9 years in 1985, to 71.3 years in 1994. The percentage who died in a UK National Health Service (NHS) hospital or nursing home fell gradually from 58% (1985) to 47.3% (1994), while the percentage who died in non-NHS hospitals, nursing homes, hospices and communal establishments increased. The percentage who died at home fell slightly but steadily between 1985 and 1992 from 27% to 25.5% and since then increased slightly to 26.5% in 1994. The percentage of home deaths was lowest in the two Thames regions (less than 25%) and highest in the West Midlands, Anglia and Oxford (over 29%). These differentials were maintained across age groups and diagnoses. Older people and women were less likely to die at home than younger people and men. Significant trends showing an increase in home deaths were found in two regions: North Thames and South Thames. Patients with cancers of the lung, colorectum, respiratory organs, bone or connective tissue and lip, oral cavity and pharynx were more likely to die at home (over 29% in 1994) than patients with cancers of the (breast (women, 25% in 1994) or the lymphatic or haematological system 16% in 1994). It can be concluded that the trend towards a reducing home death rate from cancer in England appears to have halted, although this varies between regions. This has implications for primary care services. Although hospital is still the most common place of death from cancer, the percentage of cancer patients who die in hospital is reducing. The largest rise is in the increasing use of hospices and communal establishments, including residential and nursing homes. Given the ageing population, this trend is likely to continue.

The objective of the study was to determine whether teams providing specialist palliative care improve the health outcomes of patients with advanced cancer and their families or carers when compared to conventional services. The study involved a systematic literature review of published research. The source of the data included studies identified from a systematic search of computerized databases (Medline, psychINFO, CINAHL and BIDS to the end of 1996), hand-searching specialist palliative care journals, and studying bibliographies and reference lists. The inclusion criteria for articles were that the study considered the use of specialist palliative care teams caring for patients with advanced cancer. Articles were assessed and data extracted and synthesized, with studies graded according to design. A variety of outcomes were considered by the authors. These addressed aspects of symptom control, patient and family or carer satisfaction, health care utilization and cost, place of death, psychosocial indices and quality of life. Overall, 18 relevant studies were identified, including five randomized controlled trials. Improved outcomes were seen in the amount of time spent at home by patients, satisfaction by both patients and their carers, symptom control, a reduction in the number of inpatient hospital days, a reduction in overall cost, and the patients' likelihood of dying where they wished to for those receiving specialist care from a multiprofessional palliative care team. It was concluded that all evaluations were of services considered to be leading the field, or were pioneering training and treatments. However, when compared to conventional care, there is evidence that specialist teams in palliative care improve satisfaction and identify and deal with more patient and family needs. Moreover, multiprofessional approaches to palliative care reduce the overall cost of care by reducing the amount of time patients spend in acute hospital settings.

Data on pain prevalence and severity were collected prospectively from advanced cancer patients as an integral part of two service evaluations. Six multidisciplinary palliative care teams working in Ireland formed the basis of one study and five teams based in the South of England were included in the second. A total of 695 cancer patients were referred and died in care in a minimum 6-month data collection period. Of these, 70% (486/695) were experiencing pain at referral to the services. After 2 weeks, there was a significant reduction (P < 0.0001) in the levels of pain experienced by patients, and no patient had overwhelming pain. The data emphasize that pain prevalence in advanced cancer patients cared for in the community is as high as that observed in other settings. Multidisciplinary palliative care teams are shown here to be effective in alleviating pain.

Information generated using outcome measures to measure the effectiveness of palliative care interventions is potentially invaluable. Depending on the measurement tool employed the results can be used to monitor clinical care, carry out comparative research, provide audit data or inform purchasing decisions. However, the data collected can only ever be as good as the method used to obtain them. This review aimed to systematically identify and examine outcome measures that have been used, or proposed for use in the clinical audit of palliative care of patients with advanced cancer. Database searches were performed using MEDLINE (1991-1995), CANCERLIT (1991-1995), Healthplan (1985-1995), and 'Oncolink' on the internet. Further measures were located with the assistance of other professionals working in palliative care. The criteria for the inclusion and assessment of measures were a measure assessing more than one domain and a target population of advanced disease or palliative care Forty-one measures were identified, 12 of which satisfied the inclusion criteria. These contained between five and 56 items and covered aspects of physical, psychological and spiritual domains. Each measure meets some but not all of the objectives of measurement in palliative care, and fulfils some but not all of our criteria for validity, reliability, responsiveness and appropriateness.

Six home care services in Southern Ireland collected data on a total of 757 patients over a 6-month period. Patient and family well-being were measured using the staff-rated Support Team Assessment Schedule and Karnofsky Index. Five hundred and eight patients died while in care, 75% of whom died at home. At referral, 32% of families were rated as having severe or overwhelming anxiety. During the last week of care, anxiety remained severe for 26% of family members. Patient and family well-being were inter-related, and there were significant interactions between family anxiety and patient physical and psychological symptoms, and communication. Discriminant analysis produced two predictive models. In model 1, family anxiety at referral strongly predicts family anxiety in the last week of life. In model 2, family anxiety at referral is excluded from the analysis, and the significant predictor factors at referral for family anxiety in the last 4 weeks of life are patient symptom control, sex of patient, diagnosis and patient age.

There has been little research to date on the factor which predict high anxiety in family members or carers before bereavement. Our study used data on 302 patients for whom the family's anxiety had been recorded by cancer palliative care teams in the last weeks of the patient's life. Variables known at the time of the patient's referral to the teams were entered into a discriminant analysis. A predictive function with a sensitivity of 0.75 and a specificity of 0.51 identified those families whose anxiety was rated as severe (3-4 on a scale of 0-4) during the month before the patient's death. Important predictors were: whether the family member was a spouse, a diagnosis of breast cancer, young age, the time from diagnosis and low patient mobility. There was a small significant correlation between a longer time in palliative care and lower family anxiety. The predictive model could be used oncologists to identify cases where greater psychological support will be needed.

We compared two measures that have been used by professionals to assess the quality of life and care of patients with advanced cancer. The Support Team Assessment Schedule (STAS) is an instrument for palliative cancer support teams to record and evaluate their care; the Hebrew Rehabilitation Centre for the Aged Quality of Life (HRCA-QL) index was used in the National Hospice Study (USA) to assess patients with advanced cancer. STAS has 17 items, each scaled 0 (best) to 4 (worst), and HRCA-QL has five items scaled 0 (worst) to 2 (best). The STAS and the HRCA-QL were assessed contemporaneously by the members of one support team on 128 consecutive patients referred over 17 months. Seventy-four patients spent more than four weeks in care. Ratings for four out of five HRCA-QL items deteriorated significantly in the four to six weeks before death. HRCA-QL index items correlated with similar STAS items. Correlations were highest at referral, especially in patients seen more than four weeks before death (e.g. symptom control (STAS) with health (HRCA-QL) Spearman's rho = -0.64) and the HRCA-QL total was correlated with STAS subtotal of six items (rho = -0.45). There were few correlations at death. The findings support the validity of both measures for the aspects compared, but indicated that STAS was more sensitive to changes in patients in the last six weeks of life.

The use of slow release morphine was compared between those with cancer and those with advanced HIV disease in two retrospective studies covering a total of 512 patients at home. Pain was found to be less severe in HIV/AIDS but still requiring opioid use in over a third of patients of which 14% needed subcutaneous diamorphine infusion when seriously ill at home. Slow release morphine was used by 45% of those with cancer and 17% of those with HIV/AIDS. It was found to be a simple and convenient preparation for use at home with most patients never needing more than 30 mg twice daily. Half the cancer patients prescribed slow release morphine were able to take it until the day of death.

The symptoms of 86 patients referred to a district terminal care support team were rated throughout care using a standardized schedule. Pain was the most common main symptom at referral, occurring in 35 (41%) of the patients. The assessment scores for pain showed significant improvements after one week of care (P less than 0.01) and there was a further improvement into the week of death. However, towards death, 18 (21%) patients developed dyspnoea as their main symptom, and this became the most severe symptom at death. The symptom assessment scores for patients with dyspnoea showed no change over time, suggesting that existing methods to control dyspnoea are ineffective and that new interventions are needed.