Manchaiah Vinaya, Pyykkö Ilmari, Zou Jing, Levo Hilla, Kentala Erna
Department of Speech and Hearing Sciences, Lamar University, Beaumont, TX, USA.
Department of Behavioural Sciences and Learning, The Swedish Institute for Disability Research, Linköping University, Linköping, Sweden.
Patient Prefer Adherence. 2017 Oct 26;11:1851-1857. doi: 10.2147/PPA.S142257. eCollection 2017.
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.
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.
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.
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.
为促进自助，芬兰梅尼埃病联盟（FMF）为梅尼埃病（MD）患者提供各种支持，包括患者杂志（PM）和基于互联网的同伴支持（iPS）。本研究旨在评估MD患者报告的关于PM和iPS的益处。
本研究采用横断面调查设计，通过在线方式混合使用结构化和开放式问题。从FMF会员数据库中抽取185名患者作为样本，他们提供了完整的数据。
92%的受访者认为PM有用或非常有用。PM的主要益处包括：关于疾病和症状的信息、同伴支持项目要素的信息、患者对有用的正面案例研究的体验、MD的相关新闻以及FMF的活动信息。在185人中，68人报告称他们不需要同伴支持，因为他们的疾病处于静止期或未造成任何困扰。不使用的主要原因是：疾病轻微、个人原因以及使用方面的问题。关于iPS的益处，75%的近期MD患者和64%的慢性MD患者表示他们将从此类项目中受益。iPS的主要益处包括：关于疾病及其管理的可靠信息、对应对疾病有用的同伴支持、关于管理MD症状的信息、关于管理态度的信息以及关于治疗的信息。此外，该研究还确定了不同类型的个体，包括：不使用患者组织支持的人、使用了支持但觉得没有受益的人，以及使用了支持并从中受益的人。
当前研究结果提供了一些关于MD患者对不同形式支持的偏好的信息，在制定更广泛的支持策略时肯定会有所帮助。
