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Motivations, Barriers, and Outcomes of Patient-Reported Shared Decision Making in Eosinophilic Esophagitis

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Abstract

Background

Little is known about patient choice in treatment of eosinophilic esophagitis (EoE).

Aim

Determine motivators and barriers to using common EoE therapies and describe patient-reported shared decision making (SDM) and satisfaction with treatment.

Methods

We developed and administered a Web-based survey on factors influencing EoE treatment choice, SDM, and satisfaction. Adults with EoE and adult caregivers of pediatric EoE patients were recruited via patient advocacy groups and at two centers. Descriptive statistics of multiple response questions and multivariable logistic regression were performed to identify predictors of SDM and satisfaction with treatment.

Results

A total of 243 adults (mean age 38.7 years) and 270 adult caregivers of children (mean age 9.5 years) completed the survey. Preventing worsening disease was the most common motivator to treat EoE. Barriers to topical steroids were potential side effects, cost, and preferring a medication-free approach. Inconvenience and quality of life were barriers to diet. Potential adverse events, discomfort, and cost were barriers to dilation. Nearly half (42%) of patients experienced low SDM, but those followed by gastroenterologists were more likely to experience greater SDM compared to non-specialists (OR 1.81; 95% CI 1.03–3.15). Patients receiving more SDM were more satisfied with treatment, regardless of provider or treatment type (OR 2.62, 95% CI 1.76–3.92).

Conclusions

Patients with EoE pursue treatment mostly to prevent worsening disease. Common barriers to treatment are inconvenience and financial costs. SDM is practiced most by gastroenterologists, but nearly half of patients do not experience SDM, indicating a substantial area of need in EoE.

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Acknowledgments

The authors acknowledge the support of the patient advocacy groups (Campaign Urging Research for Eosinophilic Disease, American Partnership for Eosinophilic Disorders, and Eosinophilic Family Coalition) and thank all of the participants who contributed to this study.

Author information

Authors and Affiliations

  1. Division of Gastroenterology, Department of Internal Medicine, University of Michigan, 3912 Taubman Center, 1500 E. Medical Center Drive, SPC 5362, Ann Arbor, MI, 48109, USA

    Joy W. Chang, Joel H. Rubenstein & Jessica L. Mellinger

  2. Veterans Affairs Center for Clinical Management Research, Ann Arbor VA Medical Center, Ann Arbor, MI, USA

    Joel H. Rubenstein

  3. Campaign Urging Research for Eosinophilic Diseases, Lincolnshire, IL, USA

    Ellyn Kodroff, Scholeigh Kyle & Allisa Paliana

  4. American Partnership for Eosinophilic Disorders, Atlanta, GA, USA

    Mary J. Strobel, Denise Mack, Wendy Book & Kathleen Sable

  5. Eosinophilic Family Coalition, Cincinnati, OH, USA

    Melissa Scott

  6. Division of Gastroenterology, Center for Esophageal and Swallowing Disorders, University of North Carolina, Chapel-Hill, NC, USA

    Evan S. Dellon

Authors
  1. Joy W. Chang
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  2. Joel H. Rubenstein
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  3. Jessica L. Mellinger
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  4. Ellyn Kodroff
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  5. Mary J. Strobel
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  6. Melissa Scott
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  7. Denise Mack
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  8. Wendy Book
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  9. Kathleen Sable
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  10. Scholeigh Kyle
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  11. Allisa Paliana
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  12. Evan S. Dellon
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Contributions

JWC, JHR, ESD helped in the study concept and design. JWC, JLM, ESD, EK, MJS, MS, DM, WB, KS, SK, AP contributed to development of survey instrument. JWC was involved in data acquisition. JWC helped in statistical analysis. JWC, JHR, ESD contributed to data interpretation. JWC helped in drafting of the manuscript. ESD was involved in Study supervision. HR and ESD contributed to critical revision of the manuscript.

Corresponding author

Correspondence to Joy W. Chang.

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Conflict of interest

JHR: No potential conflicts of interest related to this paper. Dr. Rubenstein has received research funding from Takeda. ESD: No potential conflicts of interest related to this paper. Dr. Dellon has received rsearch funding from Adare, Allakos, GSK, Meritage, Miraca, Nutricia, Celgene/Receptos, Regeneron, Shire/Takeda; has received consulting fees from Abbott, Adare, Aimmune, Allakos, Arena, AstraZeneca, Biorasi, Calypso, Celgene/Receptos, Eli Lilly, EsoCap, GSK, Gossamer Bio, Regeneron, Robarts, Salix, Shire/Takeda, and educational grants from Allakos, Banner, and Holoclara. None of the other co-authors report any relevant disclosures or potential conflicts of interest.

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Joy W. Chang.

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Chang, J.W., Rubenstein, J.H., Mellinger, J.L. et al. Motivations, Barriers, and Outcomes of Patient-Reported Shared Decision Making in Eosinophilic Esophagitis. Dig Dis Sci 66, 1808–1817 (2021). https://doi.org/10.1007/s10620-020-06438-5

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  • DOI: https://doi.org/10.1007/s10620-020-06438-5

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