ArticleKidney international reports2021
Identifying Information Needs of Patients With IgA Nephropathy Using an Innovative Social Media-stepped Analytical Approach.
Article in Kidney international reports, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
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Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.
- Development of a Conceptual Model for the Patient Experience of Immunoglobulin A Nephropathy (IgAN): A Qualitative Literature Review.Advances in therapy · 2024Pooled it
- Assessing Efgartigimod (VYVGART™) Social Media Posts in Generalized Myasthenia Gravis to Understand Patient, Caregiver, and Health Care Professional Sentiments.Neurology and therapy · 2026Article
- Characterization of Patient-Reported Loin Pain in IgAN.Kidney international reports · 2026Article
- Patient and Provider Perspectives on the Patient Journey in Immunoglobulin A Nephropathy.Kidney medicine · 2026Review
- Defining Disease Modification in IgA Nephropathy: Toward a Paradigm Shift in Management.Kidney international reports · 2025Review
- Understanding the Real Needs and Expectations of French Patients with Amelogenesis Imperfecta Through Facebook Content: A Qualitative Thematic Analysis.Healthcare (Basel, Switzerland) · 2025Article
- Evidence of inequities experienced by the rare disease community with respect to receipt of a diagnosis and access to services: a scoping review of UK and international evidence.Orphanet journal of rare diseases · 2025Article
- Acceptance of Innovative Technologies Among Healthcare Professionals-A Cross-Sectional Study.Nursing & health sciences · 2025Article
- Improving Social Media-Based Support Groups for the Rare Disease Community: Interview Study With Patients and Parents of Children with Rare and Undiagnosed Diseases.JMIR human factors · 2024Article
- Myasthenia Gravis: utilising cross-platform quantitative content analysis to uncover and validate unmet needs.Frontiers in neurology · 2024Article
- IgA nephropathy.Nature reviews. Disease primers · 2023Review
- Where do you stand?: an exploration of perspectives toward feet, foot health, and footwear using innovative digital methods.Journal of foot and ankle research · 2023Article
- Post-hoc analysis of a tool to predict kidney failure in patients with IgA nephropathy.Journal of nephrology · 2023Article
- Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community.BMC nephrology · 2022Article
- Facebook Groups Can Provide Support for Patients with Rare Diseases and Reveal Truths About the Secret Lives of Patients.Kidney international reports · 2021Article
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Authors and funding
6 authors at 4 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThe number of people with kidney disease using social media to search for medical information and peer support is increasing. IgA nephropathy (IgAN) predominantly affects young adults, demographically the biggest users of social media. This article presents an innovative analysis of social media interactions to identify unmet education and information needs of patients with IgAN.
methodsFollowing ethical approval for the study, the IgAN Support UK Facebook group (https://www.facebook.com/groups/915274415226674) granted us permission to anonymously collect and analyze 1959 posts and comments from 498 group users. An initial patient focus group and quantitative word-frequency analysis created an initial categorization matrix that was iteratively refined after serial analyses of the social media database to generate a final categorization matrix of needs. We evaluated narrative data relating to each identified category to define patient narratives relating to each area.
resultsA large number of information gaps and unanswered questions were identified relating to the following: diet, symptoms, diagnosis, treatment, and patient comorbidities. Patient-clinician communication and the presentation of information were also drawn out as cross-cutting issues. These themes differed significantly from those identified from the traditional patient focus group, highlighting the value of this novel method for interrogating social media data to understand unmet patient needs.
conclusionSocial media data are untapped and valuable resources that can be used to better understand patient information gaps, leading to the generation of targeted materials to address unmet educational needs. This innovative approach could be replicated across other health conditions.
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