Carers' and Users' Expectations of Services--User version (CUES-U): a new instrument to measure the experience of users of mental health services.

BACKGROUND: No existing instrument measures all or even most of the issues considered important by users of mental health services. AIMS: To develop and test a self-assessment instrument to enable users of mental health services to rate their experience across the range of domains that they consider to be important. METHOD: Relevant domains were identified and a new instrument was drafted and field tested to examine its psychometric properties. RESULTS: The 17-item, self-rated Carers' and Users' Expectations of Services--User version (CUES-U) appears acceptable to most service users. Its items have reasonable test-retest reliability and a 'total CUES-U score' correlates significantly with a total score of the Health of the Nations Outcome Scales (Spearman's rho=0.42; P < 0.01). CONCLUSIONS: The development and testing of CUES-U suggest that it might be feasible to apply a self-rated measure of the expectations and experience of users of mental health services.

Improved care of patients with small cell lung cancer. Nutritional and quality of life aspects.

A comprehensive cancer care project was carried out in Uppsala with the aim of improving the overall situation for patients treated with intensive chemotherapy with curative intent. This report gives the results in 58 patients with small cell lung cancer (SCLC), focusing on the nutritional aspects of the care and chemotherapy-related adverse effects. Responses, survival and simple nutritional parameters were compared with a historical control group (n = 81), and quality-of-life parameters with a pre-project group (n = 22). Groups were comparable with respect to pre-treatment characteristics. In contrast to the historical control group, weight, body mass index and S-albumin did not decrease during treatment in patients diagnosed during the project period. Yet, food intake in the study group was low, and for most patients below what is recommended. Survival, proportion of responses and response duration did not differ from those of the control group. Compared with the pre-project quality-of-life controls, a number of scores were more favourable for study patients (n = 36) interviewed in association with the 8th treatment course by a Swedish version of the Cancer Inventory of Problem Situations (CIPS). The global score was lower in the study group than in the pre-project group (0.80 vs 1.20, p < 0.001). Significant differences in a favourable direction were also seen in several higher order factors and miscellaneous subscales constituting the CIPS. On individual items, the study group expressed less problems with appetite/food taste in hospital, nervousness before chemotherapy and worry about adverse effects. The greatest differences in positive direction for the study group were seen within areas where the project focused on caring activities. We therefore conclude that a cancer care project with the present goals and means of intervention can improve the quality of life in patients with SCLC treated with intensive chemotherapy.

Community care for patients with schizophrenia one year after hospital discharge.

OBJECTIVES: To document the circumstances and care of patients with schizophrenia who had recently been discharged from local psychiatric inpatient services, and to establish the extent to which misgivings about community care might be justified. DESIGN: Cross sectional surveys with review of case notes. Follow up interviews with questionnaires administered one year after discharge. SETTING: Two inner London districts (West Lambeth and Lewisham) with high levels of social deprivation and at different stages of developing community services. PATIENTS: 90 and 50 patients in the two services respectively, aged 18 to 65, who satisfied the Research Diagnostic Criteria for schizophrenia and who were discharged from inpatient services. MAIN OUTCOME MEASURES: Diagnosis elicited by present state examination, global social disability rating, use of services during the three months before interview. RESULTS: 89 of the 140 patients (64%) had been ill for five or more years, yet few were former long stay inpatients. 55% (50/91; 95% confidence interval 45% to 65%) of those interviewed had current psychotic mental states and 22% (27/124; 16% to 31%) were functioning socially at very poor or severely maladjusted levels. 86% (107/124) were unemployed. The majority of patients had seen a mental health or social service professional, yet only 16% (20/124) were in specialised accomodation (excluding hospitals) and only 23% (17/73) of those eligible had used day care. Small numbers of people had experienced homelessness (two) or imprisonment (four over six months). CONCLUSIONS: Many schizophrenic patients leaving local psychiatric inpatient care have active symptomatology and profound social disabilities. Community care was characterised by high rates of contact with service professionals but little supported accommodation or day activity. This group of clients may require dedicated provision, which would actively encourage them to use services protected from the demands of those with less severe illness.