Health-related quality of life and treatment burden in patients with proliferative lupus nephritis treated with cyclophosphamide or azathioprine/ methylprednisolone in a randomized controlled trial.

Contains fulltext : 53450.pdf (publisher's version ) (Closed access)OBJECTIVE: To study prospectively the effect of treatment with cyclophosphamide pulses (CYC) or azathioprine with methylprednisolone (AZA), both for 24-month periods, on health-related quality of life (HRQOL) in patients with proliferative lupus nephritis (LN) in a randomized controlled trial. We expected better HRQOL during AZA treatment. METHODS: HRQOL and disease activity were measured at start and after 12 and 24 months. Generic questionnaires [patient's visual analog scale (VAS), Medical Outcomes Study Short Form-36 Health Survey (SF-36), Profile of Mood States] and a disease-specific measure [Systemic Lupus Erythematosus (SLE) Symptom Checklist] were used. Treatment burden was assessed at 24 months. Disease activity was measured with the SLE Disease Activity Index (SLEDAI) and physician's VAS. RESULTS: Complete questionnaire data were available from 47 of the 87 patients included in the trial. These patients were representative of the whole group, except that completers were more often Caucasian. HRQOL scores improved significantly during treatment, particularly during the first year, on both generic and disease-specific outcomes. No statistically significant differences were found in HRQOL between the CYC and AZA groups, except for the SF-36 mental component summary scale, which showed more favorable scores in the AZA group. The mean reported treatment burden at 24 months was significantly higher in the CYC group. HRQOL scores did not correlate with the SLEDAI and physician's VAS. The disease activity measures correlated positively with each other. CONCLUSION: Treatment of patients with proliferative LN with immunosuppressive drugs and corticosteroids improves HRQOL, particularly in the first year. Due to the small groups studied, the absence of differences between AZA and CYC for most HRQOL scales should be interpreted cautiously: our data suggest that there may be no significant differences. Differences were a higher perceived treatment burden and worse mental HRQOL in the CYC group

Variations in meeting centers for people with dementia and their carers. Results of a multi-center implementation study.

Contains fulltext : 59106.pdf (publisher's version ) (Closed access)In this study we investigated whether a support program based on the model of the Amsterdam meeting centers for people with dementia and their carers, is in line with the needs and possibilities in other areas in the Netherlands, or if variations in the program are indicated. This study is part of a larger study into the nationwide implementation of meeting centers in the Netherlands. The data gathered on the basis of questionnaires shows that, although the support offer is almost identical on the interregional level, there are differences in terms of initiator(s), type of location, frequency of discussion groups and monthly meeting for all participants, background of staff members, number of volunteers and structural funding. The people with dementia who use the meeting centers in the various regions do not differ significantly on sex, age, civil status, severity of dementia and physical invalidity. The family carers also exhibit more similarities than differences on the interregional level. In every region the majority of carers are female, married or cohabiting, and a minority are gainfully employed.They generally share a household with the person with dementia, or they live in the same municipality. In nearly all centers the majority of carers exhibit psychological and/or psychosomatic symptoms. In most regions participants make use of all elements of the support program (social club, discussion groups, informative meetings, consultation hour). The study shows that the support program based on the Amsterdam model meets general needs of people with dementia and their carers and is therefore generally applicable, but adaptive implementation is desirable