L O'Hara1, L H De Souza, L Ide. 1. Centre for Research in Rehabilitation, Department of Health Studies, Brunel University, London, UK. Louise.Ohara@brunel.ac.uk
Abstract
OBJECTIVE: The aim of the study was to obtain the views and priorities of people with multiple sclerosis (MS) to inform the design of a professionally guided self-care programme. DESIGN: A three-round postal Delphi survey was used as a research tool. SETTING: The study was conducted at the Centre for Research in Rehabilitation at Brunel University in London. SUBJECTS: The respondent panel consisted of 200 volunteers with MS of whom 136 responded to the survey (68%). Respondents were recruited through voluntary organizations throughout the UK. The only selection criterion was that the diagnosis of MS was confirmed by the general practitioner. MAIN OUTCOME MEASURES: The results from each of the three rounds of the Delphi survey were the outcome measures. RESULTS: One hundred and one people used ten or more self-care strategies (74%). Round 1 data revealed the diversity of practices reported, crossing many domains of life such as daily chores, leisure, relationships and physical and mental health. The top five priorities identified in rounds 2 and 3 concerned coping strategies, social support, independence in daily living, rest and mobility. Complete consensus about priorities was not achieved. However, agreement about priorities approached stability across rounds 2 and 3 and a highly significant Kendall's coefficient of concordance indicated there was good agreement within round 3 group rankings (W= 0.46, chi-squared = 499.37, df = 9, p<0.001, N= 122). CONCLUSION: Self-care practices were widespread, and those most commonly used could be identified. This survey method allows the views and priorities of this consumer group to be revealed. The information obtained can be used to develop services where the professional guides and encourages appropriate self-management based upon the issues that people with MS consider to be most important.
OBJECTIVE: The aim of the study was to obtain the views and priorities of people with multiple sclerosis (MS) to inform the design of a professionally guided self-care programme. DESIGN: A three-round postal Delphi survey was used as a research tool. SETTING: The study was conducted at the Centre for Research in Rehabilitation at Brunel University in London. SUBJECTS: The respondent panel consisted of 200 volunteers with MS of whom 136 responded to the survey (68%). Respondents were recruited through voluntary organizations throughout the UK. The only selection criterion was that the diagnosis of MS was confirmed by the general practitioner. MAIN OUTCOME MEASURES: The results from each of the three rounds of the Delphi survey were the outcome measures. RESULTS: One hundred and one people used ten or more self-care strategies (74%). Round 1 data revealed the diversity of practices reported, crossing many domains of life such as daily chores, leisure, relationships and physical and mental health. The top five priorities identified in rounds 2 and 3 concerned coping strategies, social support, independence in daily living, rest and mobility. Complete consensus about priorities was not achieved. However, agreement about priorities approached stability across rounds 2 and 3 and a highly significant Kendall's coefficient of concordance indicated there was good agreement within round 3 group rankings (W= 0.46, chi-squared = 499.37, df = 9, p<0.001, N= 122). CONCLUSION: Self-care practices were widespread, and those most commonly used could be identified. This survey method allows the views and priorities of this consumer group to be revealed. The information obtained can be used to develop services where the professional guides and encourages appropriate self-management based upon the issues that people with MS consider to be most important.
Authors: Kathleen Yin; Joshua Jung; Enrico Coiera; Liliana Laranjo; Ann Blandford; Adeel Khoja; Wan-Tien Tai; Daniel Psillakis Phillips; Annie Y S Lau Journal: J Med Internet Res Date: 2020-06-02 Impact factor: 5.428