A systematic approach to analyse health-related quality of life in multiple sclerosis:: the GEDMA study

Objective: To describe a holistic and comprehensive approach to the assessment of sufferer's perceptions of health-related quality of life (HRQoL) in a cohort of multiple sclerosis (MS) patients. Methods: The GEDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functional Assessment of Multiple Sclerosis quality of life instrument. Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. Results: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9 +/- 0.9 years. Age, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 10 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Qualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. On the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients' physical disability. Furthermore, primary caregivers described the influence of MS on their own occupational status, their nonacceptance of the disease, a perception of a lack of support by other members of the family as well as a 'selfish and intransigent' attitude of the patients themselves. Conclusions: The analysis of the GEDMA cohort provides valuable information that helps clarify the impact of MS on patients' HRQoL.