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

Authors Manchaiah V, Pyykkö I, Zou J, Levo H, Kentala E

Received 20 May 2017

Accepted for publication 19 July 2017

Published 26 October 2017 Volume 2017:11 Pages 1851—1857

DOI https://doi.org/10.2147/PPA.S142257

Checked for plagiarism Yes

Review by Single-blind

Peer reviewers approved by Dr Akshita Wason

Peer reviewer comments 2

Editor who approved publication: Dr Johnny Chen

Vinaya Manchaiah,1–4 Ilmari Pyykkö,5 Jing Zou,5,6 Hilla Levo,7 Erna Kentala7

1Department of Speech and Hearing Sciences, Lamar University, Beaumont, TX, USA; 2Department of Behavioural Sciences and Learning, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden; 3Audiology India, Mysore, 4Department of Speech and Hearing, School of Allied Health Sciences, Manipal University, Manipal, Karnataka, India; 5Department of Otolaryngology, Hearing and Balance Research Unit, University of Tampere, Tampere, Finland; 6Department of Otolaryngology-Head and Neck Surgery, Center for Otolaryngology-Head & Neck Surgery of Chinese PLA, Changhai Hospital, Second Military Medical University, Shanghai, China; 7Department of Otolaryngology, University of Helsinki, Helsinki, Finland

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.

Keywords: Ménière’s disease, chronic condition, peer support, self-help, self-management
 

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