Abstract
BACKGROUND: People with multiple sclerosis (MS) and their relatives often have multiple, complex needs which require support from a wide range of services. The aim of the study, the first of its kind in Poland, was to identify the most important needs of patients with MS and their significant others (SO). METHODS: A questionnaire developed from focus groups consisting of 20 needs-related statements was administered in seven MS centers to 573 MS patients and 220 SO. The mean age of the patients was 42.61 years old; the mean MS duration was 9.43 years. The respondents were asked to rate the needs statements according to their importance on an 11-point scale. The questionnaire was similar for the MS patients and their SO. RESULTS: The most important needs in the patient group were: to feel needed and efficient in life; to have easy access to professional rehabilitation; and to be sure that doctors are interested in my condition. The three most important needs in the SO group were: to know that relatives/friends feel needed and efficient in life; to have good living conditions; and to be sure that doctors are interested in my relative's/friend's condition. Correlation analysis revealed that in the patients group, there was a positive correlation between patient's age and the importance of factors such as the need for support and interest in their disease from the family doctor (P<0.004), receiving educational materials from an MS clinic (P<0.011), interest from the clinic in life issues of the patient (P<0.001), and the need for access to self-rehabilitation (P<0.003); while the need to continue working part-time was inversely correlated with age (P<0.009). CONCLUSION: The needs of the MS patients and SO were similar. The data validate the importance of interdisciplinary care for the MS population.