ArticleJournal of patient-reported outcomes2017
A comparison of three methods to generate a conceptual understanding of a disease based on the patients' perspective.
Article in Journal of patient-reported outcomes, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
29 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Social Media Listening to Understand the Lived Experience of Individuals in Europe With Metastatic Breast Cancer: A Systematic Search and Content Analysis Study.Frontiers in oncology · 2022Pooled it
- Incorporating patients' perspectives into the initial stages of core outcome set development: a rapid review of qualitative studies of type 2 diabetes.BMJ open diabetes research & care · 2019Pooled it
- Findings from a social media listening study on Chinese patients with Alzheimer's disease: a content analysis.General psychiatry · 2025Article
- Best practices for the collection and analysis of patient experience data from social media for patient-focused drug development.Frontiers in medicine · 2025Review
- Research methodologies for eliciting patients' preferences in invasive procedures: a scoping review.Langenbeck's archives of surgery · 2024Article
- Insights Into the Patient Experience of Hormone Therapy for Early Breast Cancer Treatment Using Patient Forum Discussions and Natural Language Processing.JCO clinical cancer informatics · 2024Article
- Identifying and developing strategies for implementation of a guided internet- and mobile-based infant sleep intervention in well-baby and community mental health clinics using group concept mapping.BMC health services research · 2024Article
- Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study.JMIR formative research · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- Artificial intelligence-enabled social media listening to inform early patient-focused drug development: perspectives on approaches and strategies.Frontiers in digital health · 2024Article
- Development and validation of a psoriasis treatment acceptability measure through group concept mapping.Health and quality of life outcomes · 2023Article
- Article
- Comparison of Literature Review, Social Media Listening, and Qualitative Interview Research Methods in Generating Patient-Reported Symptom and Functional Impact Concepts of Presbyopia.Ophthalmology and therapy · 2023Article
- A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients.Ophthalmology and therapy · 2022Article
- Quality of life (QoL) for people with primary sclerosing cholangitis (PSC): a pragmatic strategy for identifying relevant QoL issues for rare disease.Journal of patient-reported outcomes · 2022Article
- Understanding the Lived Experiences of Patients With Melanoma: Real-World Evidence Generated Through a European Social Media Listening Analysis.JMIR cancer · 2022Article
- A Patient-Centered Conceptual Model of Symptoms and Their Impact in Early Parkinson's Disease: A Qualitative Study.Journal of Parkinson's disease · 2022Article
- Living with a left ventricular assist device: Capturing recipients experiences using group concept mapping software.PloS one · 2022Article
- A Neural Network Approach for Understanding Patient Experiences of Chronic Obstructive Pulmonary Disease (COPD): Retrospective, Cross-sectional Study of Social Media Content.JMIR medical informatics · 2021Article
- A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis.Journal of patient-reported outcomes · 2021Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe Food and Drug Administration patient-reported outcome (PRO) guidance provides standards for PRO development, but these standards bring scientific and logistical challenges which can result in a lengthy and expensive instrument development process. Thus, more pragmatic methods are needed alongside traditional approaches.
methodsPartnering with the National Ankylosing Spondylitis (AS) Society, we compared three methods for eliciting patient experiences: 1) concept elicitation (CE) interviews with 12 individuals with AS, 2) "group concept mapping" (GCM) with 16 individuals with AS, 3) a social media review (SMR) of AS online chatrooms. Three conceptual models were developed and compared to explore data breadth/depth, as well as the practicalities and patient-centeredness.
resultsOverlap in concepts was observed between conceptual models; 35% of symptoms were identified by all methods. The SMR approach identified the most concepts (
conclusionsPrimary CE interviews achieved the greatest depth in conceptual understanding of patient experience; however, novel methods (GCM, SMR) provide complementary approaches for identifying measurement concepts. Each method has strengths and weaknesses and should be selected based on specific research objectives.
Identifiers
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.