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

Abstract

ObjectivesTo 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.MethodThe 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.ResultsNinety-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.ConclusionThe 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.

Association between Ménière’s disease and vestibular migraine

“…Permission was obtained from the Finnish Ménière Federation (FMF; Suomen Meniere-liitto) to allow access to the FMF registry data anonymously (i.e., without the personally identifiable information of subjects). The registry data contained detailed data on disease that the FMF had collected from their members when establishing the computer based diagnostic and peer support program during the years 2005-2016 [30][31][32][33][34][35]. Under Finnish law, this kind of study conducted in association with patient association does not require ethical approval.…”

Associations Among Medical Therapy, SelfAdministered Exercise, and Characteristics of Ménière’s Disease

“…For example, older adults with MD often have limited Internet usage skills, and their response to web-based training programs was poor when compared to younger participants, as the FMF experienced it. 30 In the present study, about one-third of the FMF members did not have an e-mail ID and could not respond to the survey. Of those who responded, only 30% did not perform any exercises, and the remaining participants engaged in different types of exercises.…”

“…In addition, the patient organization aims to promote attitude changes and acceptance of the burden of disease to learn to cope with their MD. 3 , 23 , 24 , 30 The current study showed that participants used different physical exercises as a major strategy to cope with the disorder. The same trend was not observed in medical treatment, with the exception of anti-emetics for vertigo spells, tranquilizers for balance problems, and diuretics for VDA and balance problems.…”

“…Healthcare professionals and patient organizations often recommend balance training for individuals with MD. 24 , 30 The training recommendations are on a wide spectrum, starting from vestibular rehabilitation programs conducted by a physiotherapist to minimally guided Internet-based programs with a focus on self-management. However, adherence to such programs may depend on factors such as disease character, technological savvy, access to a gym, and instructions from the patient organization.…”

“… 24 , 25 In general, the guidance on vestibular rehabilitation provided by patient organizations and/or rehabilitation centers is generic and does not personalize advice based on the type of balance problems the patient is experiencing. 30 For example, a recent literature review was inconclusive for the improvement of QoL following vestibular rehabilitation in patients with MD. 27 We speculate that after acute vestibular function derangement, as after vertigo spells, the body adapts to a low-stiffness strategy of balance control that results in uncoordinated movements between the hip and ankle joints.…”