|PROJECT TITLE||EXPLORING EXPERIENCES OF THE ILLNESS, ITS CARE AND ACHIEVING FUNCTION FOLLOWING GUILLAIN-BARRÉ SYNDROME (GAIN)|
|Funding body||Guillain-Barré and Associated Inflammatory Neuropathies (GAIN)|
|Team/consortium||University of Lincoln:
University of Leicester
|Overarching aim||The overarching aim is to explore the experiences and return to function of people with Guillain-Barré Syndrome.|
|Objectives||Guillain Barré Syndrome (GBS) is the commonest form of acute polyneuropathy with an incidence of 1-2/100,000 per year. Chronic inflammatory demyelinating poly(radiculo)neuropathy (CIDP) is a closely related condition, with a longer duration of onset, which affects 0.5-1 people per 100,000 per year. This project sought to investigate patients’ experience of care, particularly focussing on the period following discharge from hospital and return to the community, from a physical, psychological and social perspective. We sought:
|Methods||We used a mixed methods sequential design with the following component work streams:
|Outcomes||Our study has helped the GAIN charity and other stakeholders to understand how to assess and improve the experience and return to function of people with Guillain-Barré Syndrome and Chronic inflammatory demyelinating poly(radiculo)neuropathy (CIDP) .|
|Outputs||Peer reviewed research, conference presentations, web page, blogs and patient/public information.
Akanuwe J, Laparidou D, Curtis F, Jackson J, Hodgson T, Siriwardena AN (2020). Exploring the experiences of having Guillain-Barré Syndrome: a qualitative interview study. Health Expectations 23:1338–1349..
Laparidou D, Curtis F, Akanuwe J, Jackson J, Hodgson TL, Siriwardena AN (2021). Patients’ experiences and perceptions of Guillain-Barré syndrome: a systematic review and meta-synthesis of qualitative research. PLOS ONE 16(2): e0245826.
Siriwardena AN, Akanuwe JNA, Botan V, Laparidou D, Curtis F, Jackson J, Asghar ZB, Hodgson TL (2021). Patient reported symptoms and experience following Guillain-Barré Syndrome and related conditions: questionnaire development and validation. Health Expectations (online first).
|Impact||The research was designed to support GAIN’s aim of providing support and advice to meet the needs of people with GBS. The validated survey instrument developed as part of this study will facilitate repeated surveys of people with GBS and CIPD in future years.|