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Cited by 41Health Literacy and Information AccessibilityConnective tissue disorders researchSocial Media in Health Education

The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups

Open access
Ashtari, Sadaf, Taylor, Adam Daniel·2022·Journal of Medical Internet Research
DOI 10.2196/39172PMC PMC9459833
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Abstract

Background: Patients struggling with rare diseases may face challenges caused by care providers being unfamiliar with their condition. The life span of people with rare diseases may be the same as that of healthy people, but their quality of life is different. Patients with chronic pain are constantly looking for ways to mitigate their pain. Pain killers are not a permanent solution. In addition to the medical and nonmedical costs of rare diseases for both patients and health care providers, there is a need for sustainable sources of information that are available to help with pain and improve their quality of life, with the goal of reducing physician visits and hospital admissions. Objective: This study investigated the challenges that patients with genetic disorders face in managing their health conditions and finding disease-related information as well as the effect of online peer support groups on pain mitigation and care management. Methods: Interviews were conducted via Zoom between July 2021 and December 2021. Eligible participants were those who were aged >18 years, had a medical diagnosis of any type of Ehlers-Danlos syndrome (EDS) with chronic pain, and were members of any support group. Participants were recruited through an announcement in the research and survey section of The Ehlers-Danlos Syndrome Society web page. Interviews were analyzed using the framework approach. Data were systematically searched to identify patterns, analyze them, and identify themes. Interview audio files were transcribed and independently coded by two researchers (SA and AT). Through an iterative process, a final coding table was agreed upon by the researchers and used to thematically analyze the data. Results: We interviewed 30 participants (mean age 37.7, SD 15 years; n=28, 93% were women; n=23, 77% were residing in the United States). Thematic analysis revealed that participants (patients with EDS) were constantly in pain and most of them have not received accurate and timely diagnoses for many years. They expressed their challenges with health care providers regarding diagnosis and treatment, and complained about their providers’ lack of support and knowledge. Participants’ main sources of information were web-based searches, academic journals, The Ehlers-Danlos Syndrome Society web page, and online peer support groups on Facebook, Reddit, Twitter, and Instagram. Although pain killers, cannabis, and opioids are providing some pain relief, most patients (28/30, 93%) focused on nonmedical approaches, such as hot or ice packs, physical therapy, exercises, massage, mindfulness, and meditation. Conclusions: This study highlights the information gap between health care providers and patients with genetic disorders. Patients with EDS seek access to information from different web-based sources. To meet the needs of patients with genetic disorders, future interventions via web-based resources for improving the quality of care must be considered by health care professionals and government agencies.

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  • Parents and patients access information online similarly, with online support groups as most common mechanism and Facebook as most common platform in both cohorts.

    “The ways in which parents and patients access information online are very similar, with online support groups serving as the most common mechanism and Facebook being the most common platform in both cohorts.”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [31]

    The Results section, “Searching for Different Sources of Information” (page unavailable), identifies online peer support groups as the most popular resources among participants. But the Methods section, “Participants” (page unavailable), describes a study of people with Ehlers-Danlos syndrome, not separate parent and patient cohorts. The paper lists Facebook alongside several other platforms without identifying it as the most common in either cohort. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • Reddit has become a resource for research studies due to its size, accessibility, and sense of anonymity, resulting in a large pool of data, especially on uncommon or stigmatized health concerns such as obesity.

    “Reddit has become a resource for research studies due to its size, accessibility, and sense of anonymity [20], resulting in a large pool of data, especially on uncommon or stigmatized health concerns such as obesity.”

    From A Qualitative Analysis of Patient Experiences Using Semaglutide 2.4 mg for Weight Loss (2025) · cites this paper as [20]

    The Results (Searching for Different Sources of Information; page unavailable) identify Reddit as a health-related support-group platform. The Discussion (Comparison With Previous Studies; page unavailable) says online groups contain information useful for studying Ehlers-Danlos syndrome and that some participants preferred anonymity. It does not say Reddit has become a research resource because of its size, accessibility, or anonymity; the citation appears before the sentence’s separate claim about obesity. (LLM, conf=0.78)

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  • Three excluded studies focused on use of social media support groups by patients with rare diseases.

    “Similarly, 3 excluded studies [31-33] focused on the use of social media support groups by patients with rare diseases.”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [31]

  • Patients search for other people with similar conditions to connect with and want to feel part of a community.

    “Patients search for other people with similar conditions to connect with and want to feel part of a community [31-35].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [31]

  • Patients often search for advice based on others' experience on novel treatments, medications, physicians, and nonmedical therapies.

    “They also often search for advice based on others’ experience, such as on novel treatments, medications, physicians, and nonmedical therapies [31,35].”

    From Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review (2025) · cites this paper as [31]

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Research works printed but not linked: 1

  1. [8]Finding healthcare support in online communities: an exploration of the evolutionefficacy of virtual support groups. Inivan y, ed Handbook on 3D3C Platforms 2016 Cham Springer

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Authors
Ashtari, S., & Taylor, A. D.
Affiliations
California State University, Sacramento (US)
Corresponding author
Ashtari, Sadaf
ORCID
Venue
Journal of Medical Internet Research
Publisher
JMIR Publications Inc.
Published
2022-08-25
Volume
24
Issue
8
Pages
e39172
ISSN
1438-8871 (ISSN-L)
DOI
10.2196/39172
PMC
PMC9459833
OpenAlex
W4285814973
Cited by
41
References
27
Citations by year
2026: 18 · 2025: 9 · 2024: 11 · 2023: 3
FWCI
6.60
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Journal of Medical Internet Research (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
Funders
Genentech
Topics
  • Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
  • Social Sciences › Health › Social Media in Health Education
Keywords
Ehlers-Danlos syndrome, rare diseases, online peer support groups, chronic pain, pain management, patient-provider relationship, health information seeking, genetic disorders, quality of life, patient experience, social media health information, delayed diagnosis, care management, physiotherapy
MeSH terms
Adult, Ehlers-Danlos Syndrome, Female, Humans, Male, Physicians, Quality of Life, Self-Help Groups, Internet, Rare Diseases, Qualitative Research, Chronic Pain

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