Summary:Purpose: Part of our research intended to explain "Quality of Life" (QoL) differences between people with epilepsy. To this end, a series of already existing generic and disease-specific health status measures were used. In this study, they were considered as determinants of people's QoL, whereas QoL itself was conceived as a general "value judgment" about one's life.Methods: From the records of four outpatient clinics, 210 persons with epilepsy were randomly selected. During their visit to the outpatient clinic, they completed a questionnaire assessing, among other things, health perceptions and social and psychological functioning. Additional information about their medical and psychosocial status was gathered from the patient files. Data were analysed by using a hierarchical regression analysis.Results: In decreasing order of importance, "psychological distress," "loneliness," "adjustment and coping," and "stigma perception" appeared to contribute most significantly to the outcome QoL as judged by the patients themselves, regardless of their physical status. In the final model, none of the clinical variables (onset, seizure frequency, side effects of antiepileptic drugs) contributed significantly anymore to the patients' "quality-of-life judgement." Apparently the effect of other variables such as seizure frequency and health perceptions, medication and side effects, life fulfilment, self-esteem, and mastery is mediated by these variables.Conclusions: Because all of the variance in QoL of the patients was explained by the psychosocial variables included in this study, health professionals should be aware of the significance of the psychosocial functioning of the patients and the role it plays in the achievement of a good QoL. Both informal and professional support may be an adjunct to conventional treatment. In future research, this issue should be given high priority.

Summary. Mortality figures were calculated for a group of 717 Dutch haemophiliacs over the period 1973-86. Followup was on average 10-9 years; no patients were lost to followup. The data were compared to the general male population by actuarial methods and patient-year analysis. Forty-three patients died, while 20 deaths were expected in a hypothetical group of non-haemophiliacs of the same age distribution. Hence, overall mortality was 2·l times higher than in the general population. This leads to a calculated life expectancy of 66 years, äs compared to 74 years in the general male population. Mortality did not differ much by severity of haemophilia. A possibly beneflcial effect of prophylaxis on longevity was observed. Haemorrhage occurred in half of all deaths and among these traumatic bleeding was the most prevalent. The number of deaths due to ischaemic heart disease was significantly lower (80% reduction) than expected and therefore the authors conclude that haemophilia offers protection against ischaemic heart disease. Cancer mortality was significantly higher (2-5 times) than expected.

OBJECTIVES. The Groningen Activity Restriction Scale (GARS) is a non-disease-specific instrument to measure disability in activities of daily living (ADL) and instrumental activities of daily living (IADL). It was developed in studies of Dutch samples consisting of elderly or chronically ill people. The psychometric properties of the GARS demonstrated in these studies were highly satisfactory. This paper addresses the psychometric properties of the GARS across countries. METHODS. Data of 623 patients with recently diagnosed rheumatoid arthritis from four European countries were analyzed by means of a principal components analysis and a Mokken scale analysis for polychotomous items. RESULTS. The results of the analyses were highly satisfactory: there was one strong and reliable general factor representing one underlying dimension of disability in ADL and IADL, and there was a clear hierarchical ordering of the items included in the GARS. The validity of the GARS was strongly suggested by the pattern of associations of the GARS with age, sex, and other existing health status measures. CONCLUSIONS. The psychometric characteristics of the GARS, which measures disability in ADL and IADL simultaneously, make this instrument very useful for comparative research across countries.

Objective-To assess the impact of early rheumatoid arthritis (RA) on work status. Methods-The employment status of 119 patients who had jobs before the onset of RA was examined. Patients with work disability were compared with those without, for several disease characteristics, therapeutic regimen, and educational level and age.