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Objective: The subjective dimension of disability, the perception of disability, is a dimension missing from the International Classification of Functioning, Disability and Health (ICF), and from health-related quality of life (HRQOL) instruments. However, it is a highly relevant dimension for clinical practice as perceived disability may identify care needs. We therefore developed a measure for this subjective dimension of disability in multiple sclerosis (MS) and examined the contribution of this dimension to QOL., Method: A measure named the Multiple Sclerosis Impact Profile-Disability Perception (MSIP-DP) was developed to reflect a person's perception of disabilities reported using the original MSIP-disability (MSIP-D) items. MS patients (n=530) completed both MSIP sections, the medical outcome study short form questionnaire (SF-36), the World Health Organisation Quality Of Life-BREF (WHOQOL-BREF) and questions concerning disease severity. The contribution of disability perception (DP) to QOL in MS was estimated using hierarchical multiple regression analyses after controlling for MS severity., Results: Confirmative factor analysis confirmed the hypothesised disability perception domains that correspond with the related disability domains in the MSIP. DP scales yielded sufficient reliability. DP explained a unique and substantial part of the variance in QOL, particularly the perception of impairments in mental functions., Discussion: Results indicated that the subjective dimension of functioning and health operationalised in the MSIP-DP is a relevant concept in explaining QOL in MS. In clinical practice psychological interventions addressing a patient's perception of disability, particularly of impairments in mental functioning, may contribute to QOL.

Objective: People with Multiple Sclerosis (MS) experience lower levels of quality of life (QOL) than people from the general population. We examined the relative impact of MS-related disabilities on QOL., Method: Data were obtained from a sample of 530 patients who completed the Multiple Sclerosis Impact Profile (MSIP), a disability measure based on the International Classification of Functioning, Disabilities and Health (ICF) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). The impact of disabilities on QOL was estimated using hierarchical multiple regression analyses after controlling for the clinical course of MS., Results: Disabilities contributed to a unique and substantial extent to QOL variance. "Impairments in mental functions" was the most important QOL predictor. "Fatigue" showed the highest prevalence and severity scores, while the impact on QOL was limited. The estimated impact on QOL appeared to be dependent on the applied QOL measure: the WHOQOL-BREF was sensitive to disabilities related to all four ICF components, while the SF-36 was only sensitive to disabilities belonging to the 'body functions' and 'activities' components., Conclusion: Treatment programmes should target impairments in cognitive functioning, emotional functioning and sleep. Interventions are best evaluated using the WHOQOL-BREF.

Objective: To examine the stability and relative validity of the Multiple Sclerosis Impact Profile (MSIP) in criterion-related groups. The MSIP is a disease-targeted health impact measure based on a selection of International Classification of Functioning, Disability and Health (ICF) aspects selected by 98 patients and medical and non-medical health professionals., Method: Data were obtained from a postal survey of 377 individuals with Multiple Sclerosis (MS) attending the MS centre of the University Medical Center Groningen (UH) and 153 subjects from the MS patients' association. Stability was tested with t-tests for paired samples and intraclass correlation coefficients for repeated measures in a sample of 251 individuals from the UH sample. The Relative Validity (RV) was estimated using the Short Form Questionnaire (SF-36), the World Health Organization Quality of Life-BREF (WHOQOL-BREF), the Disability and Impact Profile (DIP), the Impact on Autonomy Questionnaire (IPAQ) and the Groningen Activity Restriction Scale (GARS)., Results: These indicate that the MSIP is a stable measure in time. MSIP scales showed satisfactory and strong RV. In general, the domain-specific activities and participation measures (GARS and IPAQ) performed equally or slightly better than the comparable MSIP-scales, while the MSIP performed better than the multidimensional health impact measures (SF-36, DIP and WHOQOL-BREF)., Conclusion: The MSIP demonstrated good stability and RV compared to generic health impact and domain-specific measures.