Living with a lifelong disease : patient activation among individuals recently diagnosed with multiple sclerosis

Multiple Sclerosis (MS) is a chronic, inflammatory disease affecting the central nervous system. By January 1st 2012 there were more than 10 000 persons with MS in Norway. Diagnosis is often given in the early thirties, making MS a lifelong chronic disease. Level of activation, the individual’s ability to manage their own health and health care, is important for optimizing function and managing medical treatment. Patient activation measure is a tool to assess patient activation, and enable interventions to be targeted to the individual’s activation level. Aim of Thesis: This thesis aims to assess and describe patient activation at baseline among a Norwegian cohort of individuals recently diagnosed with MS, and to compare these results with existing data on patient activation. Method: To assess available knowledge on patient activation, a limited literature search was conducted, and the results summarized in a narrative review. The thesis have further analysed baseline data from a two-year clinical research project conducted at the Neurological department, Ullevål, OUS, applying a cross-sectional study design. 28 patients responded to the baseline questionnaires, 77.5% women, mean age 32.3 years (SD 6.4). Results: The literature search identified 27 articles describing and exploring PAM13 among general populations or populations with chronic conditions. Mean activation score in our cross-sectional study was 61.2 (SD 14.4), with the majority of participants scoring either at the highest (39.3%) or the lowest (21.4%) activation level. Activation score correlated with depression score and the physical dimension of the quality of life measure. Item endorsement of the PAM13 differed from the original rank, comparable to the results from previous assessments of neurological populations. Conclusion: Our data show more diverse results on activation levels, compared to other studies. Our population is likely to include the majority of patients diagnosed with MS during the inclusion period, and is likely representative on gender, age and depression scores. The small number of participants, however, limits the statistical analysis of the material. The diversity in activation levels points in favour of individualized assessment and targeted care.M-FO