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Keywords:

  • health-related quality of life;
  • longitudinal study;
  • multiple sclerosis;
  • nursing;
  • perceptions of illness;
  • physical functioning;
  • questionnaire

Abstract

Title. Perceptions of illness and its development in patients with multiple sclerosis: a prospective cohort study.

Aim.  This paper is a report of a study to examine the degree to which socio-demographic variables, clinical variables and health-related quality of life are related to perceptions of disease severity and changes in disease severity in patients with multiple sclerosis.

Background.  Studies have shown that patients with multiple sclerosis report lower quality of life than the general population.

Method.  Questionnaires measuring health-related quality of life and perceived multiple sclerosis severity were mailed twice, 1 year apart, in May/June of 2000 and 2001, (t1 and t2), to patients with confirmed multiple sclerosis in Oslo, Norway (n = 502). Clinical data about disease onset and course were retrieved from the Oslo City Multiple Sclerosis Registry.

Findings.  Among the 313 (62·4%) people who responded at both times, those with primary progressive disease course reported higher perceived multiple sclerosis severity (< 0·001), more mental health problems (= 0·004) and lower physical functioning (< 0·001) than those with a relapsing remitting/secondary progressive disease course. Patients with primary progressive disease course reported higher mean scores for multiple sclerosis severity at t2 than at t1. Multivariate regression analysis showed that social functioning was the only factor with statistically significant relationships to perceived multiple sclerosis severity among all sub-domains of health-related quality of life or personal factors. However, physical impairment was also independently related to patients’ ratings of changes in multiple sclerosis severity during the year and illness severity 1 year later.

Conclusion.  In addition to patients’ physical impairment, healthcare workers should pay special attention to issues related to their social functioning.