Experiences of UK health-care services for people with Multiple Sclerosis: a systematic narrative review

Abigail M Methley, Carolyn Chew-Graham, Stephen Campbell, Sudeh Cheraghi-Sohi
Health Expectations: An International Journal of Public Participation in Health Care and Health Policy 2015, 18 (6): 1844-55

BACKGROUND: Multiple Sclerosis (MS) is a chronic, degenerative condition with an estimated UK prevalence of 100 000. Contact with health-care services is frequent and long-term; however, little research has investigated the experiences of health care for MS in the UK.

OBJECTIVE: The aim of this systematic narrative review was to critically review qualitative studies reporting patients' experiences of health-care services in the UK.

SEARCH STRATEGY: EMBASE, CINAHL, Medline, psychINFO and MS Society databases were searched with no date restrictions using search terms denoting 'Multiple Sclerosis', 'health-care services', 'patient', 'experience' and 'qualitative research'. Snowballing and hand searching of journals were used.

INCLUSION CRITERIA: Studies were included if they used qualitative methods of data collection and analysis to investigate adult patient's experiences of health-care services for MS in the UK.

DATA EXTRACTION AND SYNTHESIS: Data were extracted independently and analysed jointly by two reviewers. Studies were appraised for the quality of evidence described using the Critical Appraisal Skills Programme's qualitative tool. Due to the breadth of areas covered, the data were too heterogeneous for a synthesis and are presented as a narrative review.

MAIN RESULTS AND DISCUSSION: Five studies were included. Studies primarily investigated diagnosis or palliative care. Themes of importance were the emotional experience of health care, continuity of care and access to services, and support from health-care professionals. Studies were mainly poor quality and focussed on a homogenous sample.

CONCLUSIONS: This study provides the first review of the UK evidence base of experiences of health care for MS. Future research should investigate experiences of care after diagnosis in a more varied sample of participants.

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