Health care experiences of people with Multiple Sclerosis: A systematic narrative review

Multiple Sclerosis (MS) is a chronic degenerative condition of the Central Nervous System diagnosed on average between the ages of 20 and 50 years. People with MS have long term contact with health care services for both relapse management and management of daily symptoms. The aim of this systematic narrative review was to critically review studies reporting patients’ experiences of health care services investigated through qualitative methodologies and highlight priorities for future research.Electronic databases were searched including EMBASE, CINAHL, Medline and PsychINFO, in addition to grey literature databases and the MS Society library. Search terms consisted of words and phrases denoting “Multiple Sclerosis”, “health care services”, “patient”, “experience” and “qualitative research”. Snowballing and hand searching of journals were used to ensure all relevant papers were identified. No date restrictions were imposed. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme’s qualitative tool but were not excluded based on evidence quality. Systematic searches identified studies that used qualitative methods of both data collection and analysis to explore patients’ experiences of health care services, and were therefore relevant.Initial analysis suggests that the main themes highlighted in these studies focussed on lack of health care support and information at the time of diagnosis, perceived lack of coordination of care, and difficulties in communication with health care professionals. Patients’ need to be assertive to obtain services and their need for more knowledge and information on available local MS services were highlighted. Weaknesses in the samples utilised in published studies are discussed, including a paucity of male participants and participants aged less than 30 years.These findings suggest that people with MS report negative experiences of some aspects of their care. A more in-depth knowledge of patient experiences of health care will inform the development and commissioning of flexible and accessible services for people with MS, contribute to improved professional-patient communication and ensure better knowledge of, and signposting to, available services. Further research will particularly focus on younger participants and male participants to aim to fill the gaps in knowledge.