A comparison of three methods to generate a conceptual understanding of a disease based on the patients’ perspective

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 (n = 23), followed by CE interviews (n = 18), and GCM (n = 15). Eight symptoms were uniquely identified using GCM and SMR. Eliciting in-depth data was challenging for SMR as detail was not always provided. Insight into the relationships between symptoms was obtained as a “concept map” in GCM, via effective probing within interviews, and through the subject’s descriptions in SMR. Practical investment varied; CE interviews were the most resource intensive, whereas SMR was the least. Individuals in GCM and CE interviews reported high engagement.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.Electronic supplementary materialThe online version of this article (10.1186/s41687-017-0013-6) contains supplementary material, which is available to authorized users.

Incorporating patients’ perspectives into the initial stages of core outcome set development: a rapid review of qualitative studies of type 2 diabetes

“…The findings from such studies can contribute in several ways to COS development including to the ‘long list’ of outcomes needed in the early stages of the process. However, primary qualitative research can be resource intensive and require study team expertise in qualitative methodology 18. Systematic reviews of qualitative studies potentially provide an alternative to conducting primary qualitative research where suitable published studies are available 17…”

Identification of Patient Needs and Preferences in Pigmented Villonodular Synovitis (PVNS) Using a Qualitative Online Bulletin Board Study

“…A combination of different qualitative analytical tools (content analysis, grounded analysis and discourse analysis) was used to analyse patients' responses [30,31]. For themes or questions that were pre-defined, content analysis was performed to assess emerging patterns.…”

Using Group Concept Mapping to Engage a Hard-to-Reach Population in Research: Young Adults With Life-Limiting Conditions

“…This type of research requires collaboration among patients, researchers, and healthcare providers to create meaningful outcomes for patients and build sustainable programs (Government of Canada, 2017). Community-based participatory research (CBPR) is often used to involve patients and their families in the research process (Windsor, 2013); however, traditional CBPR methods such as focus groups, interviews, and survey methods exclude some patient populations in research (Humphrey et al, 2017). For example, patients living with complex physical or psychosocial conditions and/or are geographically dispersed may be unable to participate in these methods and may experience judgment, stigmatization, and marginalization within society and research process (Kauffman et al, 2013).…”

“…Some researchers have compared GCM to interviews as a patient engagement strategy. One study found that while participants felt engaged participating in an interview and GCM, the GCM subjects appreciated having a role in the research process (Humphrey et al, 2017). GCM was also found to be useful in the measurement of health-related concepts (Humphrey et al, 2017).…”

“…One study found that while participants felt engaged participating in an interview and GCM, the GCM subjects appreciated having a role in the research process (Humphrey et al, 2017). GCM was also found to be useful in the measurement of health-related concepts (Humphrey et al, 2017). In another study, the brainstorming phase of GCM was found to be more efficient when considering both time and financial costs and more comprehensive than individual interviews (Rising et al, 2019a).…”