Bidirectional Correlations Between Health Confidence and Inflammatory Bowel Disease Activity: A Nationwide Longitudinal Cohort Study

Introduction

Inflammatory bowel disease (IBD) is an incurable, lapsing-relapsing disease for which self-management behaviors are integral to long-term disease control (eg, medication adherence, disease/cancer surveillance, and clinic follow-up).¹ An individual’s belief in their ability and agency to manage disease and influence health outcomes, termed health confidence, is an important psychosocial attribute associated with chronic disease outcomes and healthcare utilization.² In a study of 17 000 surveys from patients with IBD at 23 gastroenterology (GI) practices, low health confidence was strongly associated with more active disease and healthcare utilization (office calls/messages, emergency department [ED] visits, and hospitalizations).³ However, it is unclear whether low health confidence precedes negative health outcomes or vice versa. Using a longitudinal sample of patients with IBD, we aimed to examine the directionality of the temporal associations between disease activity and health confidence.

Methods

Study Population

Adults ≥18 years of age with IBD participating in the Crohn’s and Colitis Foundation’s IBD Qorus Learning Health System at 23 GI practices across the United States between 2019 and 2021 comprised the study population.⁴ IBD Qorus is an initiative of the Crohn’s and Colitis Foundation aimed at improving the quality of care for patients with IBD nationwide using a learning health system model.⁵ In this initiative, aggregated data, collected from each point-of-care clinical interaction, is used to inform healthcare delivery improvement efforts at the participating sites.⁵ On enrollment in IBD Qorus, patients’ IBD diagnosis, phenotype, and duration were verified by a gastroenterologist. Patients were asked to fill out surveys before each outpatient GI visit, which included questions about current symptoms, health confidence, medication use, and recent healthcare utilization.⁴ Patients were included in the analysis if they responded to a preclinic visit survey at baseline and on follow-up 6 to 12 months thereafter. Patients were excluded if the health confidence score was missing on the baseline survey. If more than 1 follow-up survey met the study criteria, then the first follow-up survey was analyzed.

Study Variables

Clinical disease activity was assessed by the 2-item patient-reported outcome measures, with remission defined as the resolution of diarrhea and rectal bleeding for ulcerative colitis and resolution of diarrhea and abdominal pain for Crohn’s disease. Health confidence was assessed by the validated Wasson Health Confidence Scale, with responses scored from 0 to 10 to the question adapted for IBD, “How confident are you that you can control and manage most of your health problems related to IBD?”^2,3 Health confidence scores <7 represent low health confidence and scores >7 represent high health confidence.^3,6 IBD-related healthcare utilization within the last 6 months (ED visits, hospitalization, computed tomography scans) and medication use (corticosteroids, opioids) were reported by patients and had been assessed for reliability with medical record chart review.³ On follow-up, disease activity change was categorized as IBD flares (baseline in remission, active disease), achieved remission (baseline active disease, follow-up in remission), remained active (active disease at baseline and on follow-up), or remained in remission.

Statistical Analysis

We assessed the associations between patient, disease, and healthcare utilization factors using nonparametric bivariate analyses with the Wilcoxon signed rank test or Kruskal-Wallis test, as appropriate. We performed multivariable logistic regression to assess for correlations between IBD subtype, baseline disease activity, health confidence, corticosteroid use, and opioid use (independent variables) on subsequent disease activity (dependent variable), which were determined based on these factors’ associations with health confidence in a prior large cross-sectional study from IBD Qorus.^3,4 We performed a subgroup analysis of patients with both baseline and follow-up health confidence scores and assessed whether disease activity, healthcare utilization, and opioid or corticosteroid use was associated with differential changes in health confidence using paired t tests. P < .05 was considered statistically significant. Statistical analysis was performed on Stata Statistical Software Release 17 (StataCorp, College Station, TX, USA) and JMP version 15 (SAS Institute, Cary, NC, USA).

Ethical Considerations

IBD Qorus received Institutional Review Board (IRB) approval from Dartmouth College (Committee for the Protection of Human Subjects), which acted as central IRB, and local study sites where necessary. On enrollment, each patient consented to participate in IBD Qorus and to the use of their de-identified data for research. To protect patient confidentiality, a random temporal shift was applied to all clinical encounter dates before the researchers accessed the dataset. Only de-identified data were provided to the researchers. This secondary analysis was not deemed to fulfill the criteria for Human Subject Research by the Dartmouth IRB due to the deidentified nature of the data.

Results

Study Patients

Within the study period, 2136 patients submitted at least 1 survey. Of those, 435 (20.4%) patients at 11 sites completed at least 2 surveys with 6 to 12 months in between, leaving 870 surveys for inclusion in the analysis. The median age was 45 (interquartile range, 35-58) years, 38.9% (n = 169) were male, 60.9% (n = 265) had Crohn’s disease, and 36.6% (n = 159) had ulcerative colitis (Table 1). Nearly 40% (n = 173) of patients were in clinical remission at baseline and 47.8% (n = 208) were in clinical remission on follow-up (Table 1). The mean follow-up was 221 ± 49 days.

Low Health Confidence Increases the Risk of Active Disease

The median baseline health confidence score was 8 (interquartile range, 6-9) with right-skewed nonparametric distribution (Supplemental Figure 1). Patients with active disease, corticosteroid use, and opioid use had significantly lower baseline health confidence (Table 1). Baseline health confidence was not associated with subsequent ED visits or hospitalizations (Table 1).

On multivariable analysis, both baseline health confidence (high vs low: adjusted odds ratio, 0.85; 95% confidence interval, 0.76-0.94; P = .002) and baseline active disease (adjusted odds ratio, 2.38; 95% confidence interval, 1.50-3.78, P < .001) were independently associated with active disease on follow-up (Table 2). Baseline opioid use, corticosteroid use, and IBD subtype were not associated with subsequent disease activity after adjusting for baseline health confidence and disease activity in the multivariable analysis (Table 2).

Active Disease Decreases Health Confidence

In the subset of patients who reported health confidence both at baseline and on follow-up (n = 327), the change in health confidence had a normal distribution (mean -0.04 ± 1.88) (Supplemental Figure 1). The largest decrease in health confidence was observed in patients who had IBD flares, which was 2.0 ± 0.4 (P < .0001), 1.6 ± 0.3 (P = .001), and 1.1 ± 0.3 (P = .0002) points lower than patients who achieved remission, stayed in remission, or had persistently active disease, respectively (Supplemental Figure 1). Hospitalizations, ED visits, opioid use, and corticosteroid use were not associated with significant changes in health confidence (Supplemental Table 1).

Discussion

In this longitudinal cohort of patients with IBD, disease activity and health confidence had a bidirectional, inverse relationship. Patients with low baseline health confidence were more likely to have active disease on follow-up (independent of opioid use, steroid use, IBD type, or baseline IBD disease activity). Conversely, IBD flares and active disease are associated with significant decreases in health confidence, potentially reinforcing a vicious cycle.

A 1-way association between confidence and future active disease was previously demonstrated in a longitudinal study by IBD Partners,⁷ which may be explained by better disease management in those with higher health confidence.⁸ Notably, a novel finding in our study is that disease activity also affects future confidence. This relationship may be explained by theoretical frameworks within the biopsychosocial model,¹ such as the adverse effects of active disease on work productivity⁹ and the impact of employment on self-efficacy and self-esteem in patients with IBD.¹⁰ Patient-centered interventions that improve confidence may be important to optimize IBD management as recommended by the updated STRIDE-II (Selecting Therapeutic Targets in Inflammatory Bowel Disease-II) guidelines to restore quality of life and reduce disability as long-term treatment goals irrespective of other objective markers of inflammation.

Limitations include the nature of this study as a secondary analysis of data from IBD Qorus’ quality-of-care program aimed at reducing unplanned healthcare utilization.⁴ As the data in this secondary data analysis were not collected for research purposes, these survey data may have an inherent nonresponse and selection bias. Additionally, comorbid psychiatric disorders were not captured, which may underestimate the effect size of health confidence on disease activity. Prior studies show that patients with concomitant anxiety or depression have lower confidence in managing IBD.⁷

Strengths of this study include the longitudinal data that facilitated the characterization of the directionality of the associations between disease activity and health confidence, while accounting for potentially confounding factors, including disease activity changes (eg, flares) and opioid or corticosteroid use. Further research is needed to elucidate the relation between self-efficacy and health confidence to inform the development of effective interventions.

Conclusions

Longitudinal data from this multicenter study of patients with IBD across the United States suggest a 2-way relationship between health confidence and IBD disease activity. Patients with high health confidence had a 15% reduced risk for future IBD flares. Conversely, patients with IBD flares and active disease experience significant decreases in their health confidence. Our goal is to use these findings to identify and implement effective interventions that build and buffer patients’ health confidence as a disease-modifying strategy, adjunctive to routine medical care, to improve the long-term course of IBD.

Acknowledgments

The authors gratefully acknowledge the contributions of the many patients, physicians, nurses, coordinators, and administrators at each IBD Qorus site who participate in the program. Part of the work was presented at the 2022 Crohn’s & Colitis Congress, January 20-22, 2022, Las Vegas, NV, USA. IBD Qorus Group collaborators: Ziad Younes (Gastro One, Germantown, TN, USA), Mark C. Mattar (MedStar-Georgetown, Washington, DC, USA), Mark Metwally (University of Chicago, Chicago, IL, USA), Frank Scott (University of Colorado Anschutz Medical Campus, Aurora, CO, USA), Arthur Ostrov (Saratoga-Schenectady GI Associates, Saratoga, NY, USA), David T. Rubin (University of Chicago, Chicago, IL, USA), Mark Gerich (University of Colorado Anschutz Medical Campus, Aurora, CO, USA), Donna Gerner (Saratoga-Schenectady GI Associates, Saratoga, NY, USA), Erica Heagy (Oregon Clinic, Portland, OR, USA), Eugene Nelson (Dartmouth Institute for Clinical Practice and Health Policy, Lebanon, NH, USA), Megan Holthoff (Dartmouth Institute for Clinical Practice and Health Policy, Lebanon, NH, USA), David Hudesman (NYU Langone Medical Center, New York, NY, USA), Ridhima Oberai (Crohn’s and Colitis Foundation, New York, NY, USA), Christopher Almario (Cedars-Sinai, Los Angeles, CA, USA), Harry Bray (Oregon Clinic, Portland, OR, USA), Damara Crate (Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA), Jason K. Hou (Baylor College of Medicine, Houston, TX, USA), Donald Lum (Oregon Clinic, Portland, OR, USA), Siddharth Singh (University of California, San Diego, San Diego, CA, USA) Rose Arrieta (Northwestern University, Chicago, IL, USA), Andrea Banty (Cedars-Sinai, Los Angeles, CA, USA), John Betteridge (Regional GI, Lancaster, PA, USA), Jessica Carron (Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA), Aline Charabaty (Johns Hopkins Medical Center, Baltimore, MD, USA), Michael Danielewicz (Gastroenterology Associates, Inc, Providence, RI, USA), Josh Deitch (Cedars-Sinai, Los Angeles, CA, USA), Francis Farraye (Mayo Clinic, Jacksonville, FL, USA), Helen Fasanya (Midwest Gastroenterology Associates, Omaha, NE, USA), Ann Flynn (University of Utah Health, Salt Lake City, UT, USA), Christina, Ha (Cedars-Sinai, Los Angeles, CA, USA), Lia Kaufman (Spectrum Health, Grand Rapids, MI, USA), Nirmal Kaur (Henry Ford Medical Group, Detroit, MI, USA), Kristi Kearney (University of Chicago, Chicago, IL, USA), Alice M. Kennedy (Dartmouth Institute for Health Policy & Clinical Practice, Lebanon, NH, USA), Betty Kim (Oregon Clinic, Portland, OR, USA), Michelle, Kwon (Gastroenterology Associates, Inc, Providence, RI, USA), Helen Le (University of California, San Diego, San Diego, CA, USA), Carrie Mize (Gastro One, Germantown, TN, USA), Emily Morgan (Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA), Linda Morris-McCoy (Spectrum Health, Grand Rapids, MI, USA), Alexis Oonk (University of Colorado, Aurora, CO, USA), Teresa Pashby (Gastro One, Germantown, TN, USA), Victoria Rai (University of Chicago, Chicago, IL, USA), Swapna Reddy (Oregon Clinic, Portland, OR, USA), Kami Roake (University of Utah, Salt Lake City, UT, USA), Richa Shukla (Baylor College of Medicine, Houston, TX, USA), Gaurav Syal (Cedars-Sinai, Los Angeles, CA, USA), Cindy Traboulsi (University of Chicago, Chicago, IL, USA), Quin Turner (Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA), John Valentine (University of Utah Health, Salt Lake City, UT, USA), Raluca Vrabie (NYU Langone, New York, NY, USA), Trisha Walker (Shreveport Gastroenterology), Julie Weatherly (Baylor College of Medicine, Houston, TX, USA), Emmanuelle Williams (Penn State Health, State College, PA, USA), Laura Yun (Northwestern University, Chicago, IL, USA), and Tim Zisman (Virginia Mason Medical Center, Seattle, WA, USA).

Author Contribution

C.S.T., W.K.v.D., G.Y.M., C.A.S.: inception of the study. S.A.W., B.J.O., W.K.v.D., G.Y.M., and C.A.S. designed the survey. B.J.O. contributed to the oversight of the IBD Qorus data management system. C.S.T. and C.-H.W. analyzed the data. C.S.T. and W.K.v.D. interpreted the data. C.S.T., G.Y.M., C.A.S., S.A.S.: data acquisition. C.S.T. drafted the manuscript. All authors critically reviewed and revised the manuscript and approved the final version.

Funding

IBD Qorus is an initiative of the Crohn’s and Colitis Foundation. IBD Qorus is made possible in part by the support of AbbVie, AMAG Pharmaceuticals, Eli Lilly, Helmsley Charitable Trust, Janssen Biotech, Luitpold Pharmaceuticals, Nephroceuticals, Nestle Health Sciences, Pfizer, Takeda Pharmaceuticals U.S.A., and UCB/Ferring. Supporters had no involvement in the design or conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, approval of the manuscript, or the decision to submit the manuscript for publication. Supporters did not provide direct funding to investigators for any aspect of this study.

Conflicts of Interest

C.S.T. has received research grant funding from the American Gastroenterological Association. G.Y.M. has served as a consultant for AbbVie, Arena, Bristol Myers Squibb, Boehringer Ingelheim, Entasis, Medtronic, Nephroceuticals, Oshi, Pfizer, Samsung Bioepis, Takeda, and Techlab; and received research funding from Pfizer and the Crohn’s and Colitis Foundation. C.A.S. has served as a consultant or on the advisory board for AbbVie, Amgen, BMS, Lilly, Janssen, Pfizer, Prometheus, and Takeda; has served as a speaker for continuing medical education activities for AbbVie, Celgene, Janssen, Pfizer, and Takeda; and has received grant support from the AbbVie, Janssen, Pfizer, and Takeda. S.A.W. is an employee of the Crohn’s and Colitis Foundation. B.J.O. has served as an educational and research consultant for @Point of Care and has received investigator-initiated research grants from Biogen and EMD Serono. W.K.v.M. has received research grant funding from the Crohn’s and Colitis Foundation. G.E. has edited and published books that provide royalties: Shared Decision Making (Oxford University Press) and Groups (Radcliffe Press); owns copyright of collaboRATE, integrate, consideRATE, coopeRATE, incorporate, Observer OPTION-5, and Observer OPTION-12; is founder and director of &think LLC, which owns the registered trademark for Option Grids patient decision aids; and is Chief Clinical Research Scientist to abridge AI Inc. C.-H.W. and S.A.S. have no disclosures to report.

Data Availability

Data, analytical methods, and study materials can be available to other researchers are available upon reasonable requests sent to the corresponding author.

References