Adding a subjective dimension to an ICF-based disability measure for people with multiple sclerosis: development and use of a measure for perception of disabilities.

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.