The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71,744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.
Research in supported housing for psychiatric patients has so far been neglected. Large scale surveys on structure, process, and outcomes across a variety of housing schemes may be useful in the future to identify some of the key variables influencing outcomes. The use of direct observation methods in conjunction with other more conventional, standardized instruments may also highlight areas for improvement. In conducting research, structure and process, as well as outcomes, need to be considered. Thus, we need to know not just what to provide, but how to provide it in such a way that it will maximize beneficial outcomes. This represents a considerable research agenda.
The aims of this cross-sectional survey were to assess psychotic sufferers' perception of the effectiveness of their medication, the distress caused by adverse effects and the impact these might have on overall patient satisfaction with treatment. Three hundred and forty-one people diagnosed with psychosis who called a national mental health helpline (SANELINE) in the UK, between July 1998 and February 1999, were asked to take part in the survey. They were given a choice of either a postal questionnaire or a telephone interview in which the same questionnaire was used. One hundred and nineteen were interviewed on the telephone and 83 (out of 222) returned completed questionnaires. In total, information was available from 202 callers. Almost one-half of the respondents were dissatisfied with their medication, and almost all of them reported experiencing at least one adverse effect. Depression (or low mood), sedation and difficulty thinking and concentrating were the most prevalent adverse effects. Weight gain was the most distressing, particularly to women. Those taking atypical antipsychotics were significantly more likely than those on typical antipsychotics to experience insomnia and dry mouth, but were less likely to perceive depression and difficulty thinking/concentrating as quite or extremely distressing. Low satisfaction, as opposed to high satisfaction, was significantly associated with reporting weight gain, difficulty thinking/concentrating, insomnia and sexual dysfunction. It was also significantly associated with reporting weight gain, difficulty thinking/concentrating, muscle/joint stiffness and depression as quite or extremely distressing. Attention should be given to the management of cognitive impairment and weight gain as adverse effects of antipsychotics. Doctors should be more open to discussing the risks and nature of adverse effects with patients who should also be encouraged to do so.
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