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Perceptions of and Experiences with the COVID-19 Pandemic Among Individuals with Inflammatory Bowel Disease

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Abstract

The COVID-19 pandemic resulted in increased feelings of emotional distress and disruptions in care across diverse patients subgroups, including those with chronic medical conditions such as inflammatory bowel diseases (IBD). We sought to understand the impact of the pandemic on the physical and emotional well-being of individuals with IBD and concurrent depression and/or anxiety symptoms. We conducted qualitative interviews after the beginning of the pandemic with 46 adults with IBD. Participants reported increased levels of emotional distress, feelings of social isolation, and uncertainty over whether IBD medications put them at increased risk. Young adults discussed feeling as if their lives had been disrupted. In addition, several individuals demonstrated resiliency and emphasized positives about the pandemic, including increased connectivity with family and friends, the convenience of being able to work from home despite their IBD symptoms, and lessened feelings of “missing out.” Our findings highlight several opportunities to improve the health and well-being of individuals with IBD and beyond including increased support for combatting social isolation, enhanced counseling about medication risks and benefits, and the incorporation of resiliency skills building.

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Data Availability

The authors of this publication have full control of all primary data, which can be provided upon request. Public sharing of this data at the individual level is not permitted due to privacy reasons.

Code Availability

Not applicable.

References

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Funding

Research reported in this publication was (partially) funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (IHS-2017C3-8930). The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI®, its Board of Governors or Methodology Committee.

Author information

Authors and Affiliations

  1. UPMC Center for High-Value Health Care, UPMC Insurance Services Division, U.S. Steel Tower, 600 Grant St., 40th Floor, Pittsburgh, PA, USA

    Ashley L. Taylor, Jane Kogan, Jessica Meyers & Cara Nikolajski

  2. Digestive Disease and Surgery Institute, Cleveland Clinic, Cleveland, OH, USA

    Stephen Lupe, Benjamin Click & Benjamin Cohen

  3. Gastroenterology and Hepatology, University of Colorado, Aurora, CO, USA

    Benjamin Click

  4. Department of Psychiatry, University of Pittsburgh, Pittsburgh, PA, USA

    Eva Szigethy

  5. Icahn School of Medicine, Mount Sinai, New York City, NY, USA

    Laurie Keefer

Authors
  1. Ashley L. Taylor
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  2. Jane Kogan
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  3. Jessica Meyers
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  4. Stephen Lupe
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  5. Benjamin Click
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  6. Benjamin Cohen
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  7. Eva Szigethy
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  8. Laurie Keefer
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  9. Cara Nikolajski
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by CN, JM, and ALT. The first draft of the manuscript was written by ALT and CN and all authors commented on the subsequent versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Ashley L. Taylor.

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Conflicts of Interest

Laurie Keefer discloses consultant/advisory relationships with Abbvie, Pfizer, Eli Lilly, and Takeda. She is a co-founder and equity owner of Trellus Health, a for-profit company. The remaining authors have no conflict to disclose.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The study was approved by the Institutional Review Boards at the University of Pittsburgh, Cleveland Clinic, and the Icahn School of Medicine at Mount Sinai.

Consent to Participate

Informed consent was obtained from all individual participants included in the study.

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Participants consented to the publication of de-identified data collected as a part of this research study.

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Appendix 1

Appendix 1

Qualitative Interview Guide

  1. 1.

    Tell me about your experiences with Inflammatory Bowel Disease, or IBD for short.

    1. a.

      Have you been diagnosed with Crohn’s disease or ulcerative colitis?

    2. b.

      When were you diagnosed?

    3. c.

      What types of symptoms do you most commonly experience?

      1. i.

        How long did you experience these symptoms before you were formally diagnosed?

    4. d.

      How has having [diagnosis] affected you?

      1. i.

        Has it affected your quality of life? In what way(s)?

      2. ii.

        Has it affected your ability to do certain things? How so?

    5. e.

      How are you currently managing your IBD?

      1. i.

        When your IBD symptoms worsen, what do you do?

    6. f.

      Are there ways in which your IBD could be better managed? Please explain.

      1. i.

        Other than your healthcare providers, do you routinely talk with anyone about your IBD symptoms or treatment? Does anyone help you manage your IBD? (Probe about social support from friends/family.)

      2. ii.

        Do you ever seek support from online communities/support groups? Please explain.

      3. iii.

        Have you experienced any barriers to getting the health care that you need for your IBD? (Probe about transportation, difficulty getting appointments, insurance issues.)

  2. 2.

    Have you been told that you have depression, anxiety, or another mental health condition?

    1. a.

      If yes: Who provided you with information about your diagnosis?

      1. i.

        When were you diagnosed?

    2. b.

      If no: Have you ever experienced symptoms of depression or anxiety?

    3. c.

      How has having [insert mental health condition/symptoms] affected you?

    4. d.

      Does your [insert mental health condition/symptoms] affect your IBD symptoms? Do your IBD symptoms affect your [insert mental health condition/symptoms] symptoms? How so?

    5. e.

      How are you currently managing your [insert mental health condition/symptoms]?

      1. i.

        When your [insert mental health condition/symptoms] symptoms worsen, what do you do?

    6. f.

      Are there ways in which your [insert mental health condition/symptoms] could be better managed? How so?

  3. 3.

    Next, I want to ask you a few questions about your experiences during the COVID-19 pandemic.

    1. a.

      In what ways has the COVID-19 pandemic affected you? (Probe for social disruption related to work, enjoyment, social life, etc.)

    2. b.

      Has the COVID-19 pandemic impacted your IBD symptoms? How so? What about your depression/anxiety symptoms?

    3. c.

      Has the COVID-19 pandemic impacted the way you treat or manage your IBD? In what ways? What about your depression/anxiety?

  4. 4.

    Prior to receiving care at [insert formal name of site] medical home, what types of provider(s) did you see to treat your IBD?

    1. a.

      How did you find out about the [insert formal name of site] medical home?

    2. b.

      What factors led you to make your first appointment at [insert formal name of site] medical home.

    3. c.

      Are there benefits to receiving your IBD care at [insert formal name of site] medical home? If so, what are they?

    4. d.

      Do you have any concerns about receiving your care at [insert formal name of site] medical home? If so, what are they?

[For Transition age only (between 18–30)]

  1. 5.

    What support do you think patients need when transitioning from pediatric care into an adult IBD care setting?

    1. a.

      Are there special considerations that adult IBD providers should think about when working with young people who are transitioning into adult IBD care?

    2. b.

      Are your parents or other family members involved in your IBD care? In what ways?

[For TEAM only]

  1. 6.

    What are your thoughts about coming into the same office to see all the providers on the [insert formal name of site] medical home team, such as the G.I. doctor, nurse practitioner, social worker, psychiatrist/psychologist, dietician, etc.?

    1. a.

      What expectations do you have about:

      1. i.

        Frequency of visits?

      2. ii.

        Communication with care team?

      3. iii.

        IBD symptom management?

      4. iv.

        Mental health symptom management?

[For TECH only]

  1. 7.

    What are your thoughts about having video or phone consultations with your [insert formal name of site] providers?

    1. a.

      What expectations do you have about:

      1. i.

        Frequency of visits?

      2. ii.

        Communication with care team?

      3. iii.

        IBD symptom management?

      4. iv.

        Mental health symptom management?

  2. 8.

    In addition, you may be provided with access to RxWell, a program that you can access on your smartphone or tablet that teaches techniques to manage depression and/or anxiety symptoms. What are your thoughts about using this type of program to manage your [insert mental health condition/symptoms]?

    1. a.

      What expectations do you have about this program?

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Taylor, A.L., Kogan, J., Meyers, J. et al. Perceptions of and Experiences with the COVID-19 Pandemic Among Individuals with Inflammatory Bowel Disease. J Clin Psychol Med Settings 31, 279–291 (2024). https://doi.org/10.1007/s10880-023-09979-9

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  • DOI: https://doi.org/10.1007/s10880-023-09979-9

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