Patient-reported benefits from patient organization magazines and Internet-based peer support in Ménière’s disease

摘要

Objectives: To facilitate self-help, the Finnish Ménière’s Federation (FMF) provides various kinds of support to persons with Ménière’s disease (MD), which includes patient magazines?(PM) and Internet-based peer support (iPS). The current study aimed to evaluate the benefits reported by MD patients in terms of PM and iPS. Method: The study used a cross-sectional survey design with a mixture of structured and open-ended questions administered online. A sample of 185 patients from the FMF membership database provided complete data. Results: Ninety-two percent of the respondents rated PM as useful, or very useful. The main benefits of PM included: information on the disease and complaints, information about elements of peer support program, patient’s experience with useful positive case studies, relevant news on MD, and information of activity of the FMF. Of the 185 persons, 68 reported that they did not have a need for peer support as their disease was either in silent phase or did not cause any annoyance. The main reasons for nonuse were: mild disease, personal reasons, and problems in using. Regarding the benefits of iPS, 75% of recent and 64% of chronic MD patients said that they would benefit from such a program. The main benefits of iPS included: reliable information on the disease and its management, peer support useful for coping with the disease, information about managing MD symptoms, information about managing attitude, and information about therapy. Moreover, the study identified different groups of individuals, which included: nonusers of support from patient organizations, those who used the support but did not feel they benefited, and those who used and also benefited from such programs. Conclusion: The current study results provide some information about the preferences of MD patients regarding different forms of support and could certainly prove helpful while developing wider support strategies.