Health-related quality of life (HRQoL) questionnaires finding increasing use in medicine, but still only few publications have reported on HRQoL in patients with multiple sclerosis (MS). Because of its progressive and disabling nature, the disease has a considerable effect on HRQoL. To facilitate the interpretation of scores for the heterogeneous MS population, we explored differences between subgroups of MS out-patients (n = 90) on two HRQoL instruments: the Medical Outcome Study Short Form-36 and the Disability and Impact Profile. Three disease-related characteristics were studied: severity of MS, time since diagnosis, and MS progression in the past 6 months. The results show that each of these have an effect on one or more aspects of HRQoL. Thus, the longer the disease duration and the more severe and progressive the MS, the lower is the patient's experienced HRQoL.
Seventy-three Dutch and Flemish patients with definite multiple sclerosis (MS) were assessed by means of the Disability and Impact Profile (DIP), which is a 2 x 39 item, self-administered questionnaire with parallel questions about disabilities and their importance for or impact on the patient, resulting in a profile of weighted scores. It was designed as a tool for clinical assessment of quality of life (QoL) domains in MS patients. Group data showed more than 50% loss on weighted scores for "walk", "clean home", "work" and "worry about deterioration". In individual patients a median of 7 (range 0-23) major disruptions of quality of life (MD-QoL: loss on weighted score more than 50%) was found. Prevalence of MD-QoL in more than 10% of the patients was found for as many as 31 disabilities and > 50% for 3 ("clean home", "work" and "worry about deterioration"). Results in the MS group were compared with available data from 25 patients with rheumatoid arthritis (RA) and 25 patients with a spinal cord lesion (SCl). Weighted scores of "read", "memory" and "concentration" were significantly lower in the MS group than in the RA and SCl groups. Significantly lower weighted scores in both the MS and RA groups were found for "worry about deterioration", "physical endurance", "clean home", "work", "see" and "write". In conclusion, major disruptions in many domains of QoL were found in MS patients. Weighted score profiles for MS were in accordance with clinical manifestations. Unlike Kurtzke's Extended Disability Status Scale, DIP assesses a wide range of potentially MS-affected human activities, and also takes into account the subjective perception of disabilities.
In a study of preconditions of responsiveness, we examined the variances obtained by two different ways of responding to questionnaire items. Subjects were 168 first-year medical students. They all completed a questionnaire of nine items. The original Likert-like scoring was (partially) replaced by visual analogue scoring in three quarters of the questionnaires. For three items the analogue form had a significantly greater variance than the discrete form, but no discrete item had a significantly greater variance than its analogue counterpart. Assuming that a greater variance was indicative for a greater responsiveness, our findings provide some support for the preferred use of analogue scales over discrete response categories in the measurement of changes over time.
Adolescent transsexuals were compared with adolescent psychiatric outpatients and first-year university students to determine the extent to which other psychopathology is a necessary condition for the development of transsexualism. Three areas of psychological functioning associated with fundamental psychological disturbances--perceptual inaccuracy, disorders of thought and negative self-image--were assessed by means of the Rorschach Comprehensive System. The group of adolescent transsexuals was found to be intermediate between adolescent psychiatric patients and nonpatients for extent of perceptual inaccuracy. They did not differ significantly from nonpatients with regard to thinking disturbances and negative self-image. The psychiatric patients included significantly more individuals characterized by negative self-image than the other groups. The results support the idea that major psychopathology is not required for the development of transsexualism.
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