Unmet needs of severely affected multiple sclerosis patients: The health professionals’ view

Abstract

Background: Research has only started recently to specifically concentrate on the group of patients severely affected by multiple sclerosis (MS). Aim: The aim of this study was to assess the perception on patients’ unmet needs by healthcare professionals. Methods: Focus groups and expert interviews were recorded, transcribed verbatim and analysed by qualitative content analysis. Results: Unmet needs were identified in four main categories (‘support from family/friends’; ‘healthcare services’; ‘managing everyday life’; ‘maintaining biographical continuity’). Whereas physicians assessed most unmet needs in the category ‘healthcare services’, nurses and social workers focussed on unmet needs in the categories ‘support from family/friends’ and ‘maintaining biographical continuity’. Although the study focused on unmet needs of patients, professionals also voiced their unmet needs when caring for these patients. The group of professionals identified more subcategories than patients and included unmet needs of relatives. Conclusion: Adding professionals’ perspective to that of patients is essential to gain a holistic view on patients’ unmet needs and to further optimize their care. The perspective of palliative care might contribute to meet unmet needs of severely affected MS patients.