Identifying and Predicting the Goals and Concerns Prioritised by Individuals with Inflammatory Bowel Disease

Tse, Chung Sang; Citters, Aricca D. Van; Ricci, Brittany; Freundlich, Noah Z; Lee, Moses; Shah, Samir A.; Melmed, Gil Y.; Siegel, Corey A.; Deen, Welmoed K. van

doi:10.1093/ecco-jcc/jjab142

Cited by 4 publications

(2 citation statements)

References 25 publications

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“…In both groups, patients were asked to respond to a pre-visit question (see Appendix 1) to elicit their goals and/or concerns. 5 – 7 …”

Section: Methodsmentioning

confidence: 99%

“…In both groups, patients were asked to respond to a pre-visit question (see Appendix 1) to elicit their goals and/or concerns. [5][6][7] Four key similarities and differences in the wording of the two questions were noted. Both questions: (i) did not draw a distinction between the concept of goal versus concern; (ii) directed patients to focus on healthcare related issues; and (iii) asked the response to be singular.…”

Section: Settings Participants and Questions Comparedmentioning

confidence: 99%

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Eliciting patients’ healthcare goals and concerns: Do questions influence responses?

et al. 2022

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There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients’ goals and concerns are elicited appears to have an impact on responses and warrants further investigation.

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“…In both groups, patients were asked to respond to a pre-visit question (see Appendix 1) to elicit their goals and/or concerns. 5 – 7 …”

Section: Methodsmentioning

confidence: 99%

Section: Settings Participants and Questions Comparedmentioning

confidence: 99%

Eliciting patients’ healthcare goals and concerns: Do questions influence responses?

et al. 2022

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The Real-World Global Use of Patient-Reported Outcomes for the Care of Patients With Inflammatory Bowel Disease

Horrigan

Louis

Spinelli

et al. 2023

Crohn's &Amp; Colitis 360

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Background Many patient-reported outcomes (PROs) have been developed for inflammatory bowel disease (IBD) without recommendations for clinical use. PROs differ from physician-reported disease activity indices; they assess patients’ perceptions of their symptoms, functional status, mental health, and quality of life, among other areas. We sought to investigate the current global use and barriers to using PROs in clinical practice for IBD. Methods A cross-sectional survey was performed. An electronic questionnaire was sent to an international group of providers who care for patients with IBD. Results There were 194 respondents, including adult/pediatric gastroenterologists, advanced practice providers, and colorectal surgeons from 5 continents. The majority (80%) use PROs in clinical practice, 65% frequently found value in routine use, and 50% frequently found PROs influenced management. 31 different PROs for IBD were reportedly used. Barriers included not being familiar with PROs, not knowing how to incorporate PRO results into clinical practice, lack of electronic medical record (EMR) integration, and time constraints. Most (91%) agreed it would be beneficial to have an accepted set of consistently used PROs. The majority (60%) thought that there should be some cultural differences in PROs used globally but that PROs for IBD should be consistent around the world. Conclusions PROs are used frequently in clinical practice with wide variation in which are used and how they influence management. Education about PROs and how to use and interpret an accepted set of PROs would decrease barriers for use and allow for global harmonization.

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Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment

Kamp

Hawes

Tse

et al. 2022

Inflammatory Bowel Diseases

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Background Although validated patient-reported outcome (PRO) measurements can categorize patients with inflammatory bowel disease (IBD) into clinical remission or active disease, patients may have different definitions of remission. The purpose of this study was to compare patient-defined remission to remission based on PRO measures and physician global assessment (PGA) and to understand the clinical and demographic factors associated with disagreements. Methods We retrospectively analyzed 3257 de-identified surveys from 2004 IBD patients who consented to participate in the Crohn’s and Colitis Foundation’s IBD Qorus Learning Health System between September 2019 and February 2021. We used logistic regression models with generalized estimating equations to analyze the clinical and demographic factors (eg, age, disease duration, health confidence) associated with discordance between patient-defined remission (yes/no) and PRO-defined remission for ulcerative colitis (UC; PRO2: stool frequency, rectal bleeding) and Crohn’s disease (CD; PRO-3: average number of liquid stools, abdominal pain, well-being). Results Among patients with UC, overall concordance was 79% between patient self-report and PRO2-defined remission and 49% between patient self-report and PGA-defined remission. Among patients with CD, overall concordance was 69% between patient self-report and PRO3-defined remission and 54% between patient self-report and PGA-defined remission. Patients in PRO-defined remission were more likely to report active disease if they had IBD <5 years and low health confidence. Patients with PRO-defined active disease were more likely to report remission if they were not using prednisone and had high health confidence. Conclusion Discordance exists between how remission is defined by patients, PRO measures, and PGA.

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Identifying and Predicting the Goals and Concerns Prioritised by Individuals with Inflammatory Bowel Disease

Cited by 4 publications

References 25 publications

Eliciting patients’ healthcare goals and concerns: Do questions influence responses?

Eliciting patients’ healthcare goals and concerns: Do questions influence responses?

The Real-World Global Use of Patient-Reported Outcomes for the Care of Patients With Inflammatory Bowel Disease

Concordance and Discordance Between Patient-reported Remission, Patient-reported Outcomes, and Physician Global Assessment

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