Experiences of people following Guillain-Barre Syndrome and Associated Neuropathies: questionnaire development and validation
Guillain-Barré Syndrome (GBS) is a rare inflammatory peripheral nerves disorder with variable recovery and variant or chronic forms. Previous qualitative studies have been published of GBS sufferers’ experiences but survey evidence on the experiences and needs of people with GBS or its variants particularly in a UK context is limited. We aimed to develop and validate a survey to quantify the experiences and health and social care needs of people with GBS and its variants in the UK.
We developed a self-administered anonymous online questionnaire survey to explore patients’ experiences of care and recovery from GBS. Questionnaire items were based on a systematic review and metasynthesis of qualitative studies and an interview study of people with the condition. After gaining ethical approval, the survey was publicised via a national GBS charity website and social media. Participants with a diagnosis of GBS consented and completed the questionnaire online. Question domains included experiences of the GBS and its care, symptom severity at various stages, and factors that supported or hindered recovery. We conducted descriptive statistical analyses and developed a multiple regression model exploring the relationship between experiences, demographic and disease factors.
Of 291 responders who completed the survey within 6 weeks of its launch, 140 (51.9%) were male, 130 (48.1%) female; 178 (65.9%) married or in civil partnership whereas 57 (21.1%) were single; 252 (86.6%) were from the UK. Most participants (116; 43%) were diagnosed between 2015 and 2019. Time to diagnosis was usually 1-7 days (161, 61.7%). First medical help was sought more often from a general practitioner (163; 62.2%) than from the Emergency Department (67; 25.6%). Improvement in symptoms was associated with younger age (≤ 39 years vs older), patients who were married (vs civil partnership or single), and those who presented to medical care early within the first 4 weeks compared with later. Improvement in symptoms was also better in responders who had a good response to immunoglobulins and/or plasma exchange therapy, those who were treated in a hospital intensive care unit and those who were positive about occupational therapy. Responders expressed a preference for information from health care staff compared with charities or social media but were more likely to experience better information from the latter. Analysis also showed high completion rates, scale reliabilities and construct validity in relation to previous studies, such as greater symptom improvement in younger people and those who received early intensive treatment.
The survey showed good evidence of face and construct validity and internal consistency. It could be used to explore experiences and how these could be improved in a larger population of people with GBS, and to evaluate the effect of interventions designed to improve experiences.