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An assessment of symptom burden in inflammatory bowel diseases to develop a patient preference-weighted symptom score

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Abstract

Purpose

Inflammatory bowel disease (IBD) patients experience diverse symptoms and the impact of these different symptoms varies substantially. Current disease activity measures do not account for the relative importance of the different symptoms and severity levels. In this study, we aimed to quantify the relative importance of different symptoms for IBD patients and to develop a patient preference-weighted symptom (PWS) score to assess symptom burden in IBD.

Methods

We performed a choice-based conjoint analysis (CBCA) survey with 129 IBD patients to estimate the relative importance of four common IBD symptoms: stool frequency, abdominal pain, blood in stools, and urgency. We then developed the PWS score using the preferences obtained from the CBCA, which we validated against existing measures.

Results

CBCA revealed that urgency was the most important symptom to patients, followed by abdominal pain and blood in stools. Urgency associated with incontinence received particularly high scores and was perceived to be more than 3 times as important as urgency without incontinence. Our results confirmed that different symptoms are not equally bothersome, and we showed that the relation between symptom-level and importance is not linear. The PWS score, which we developed using these estimates was highly correlated with existing disease activity measures.

Conclusions

We quantified the relative importance of four common IBD symptoms and developed the PWS score for IBD, which takes the relative importance of different symptoms and symptom-levels into account. The PWS score can be used to obtain a patient-centered assessment of symptom burden.

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Availability of data and material

Upon request from the corresponding author.

Code availability

Sawtooth Software (Provo, UT) was used for survey design, survey hosting, and hierarchical Bayes modeling. Statistical tests were performed using SAS 9.4 (Cary, NC). SAS code is available upon request from the corresponding author.

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Acknowledgements

This work was supported by funds from the University of Southern California Gehr Family Center for Health Systems Science.

Funding

This work was supported by funds from the University of Southern California Gehr Family Center for Health Systems Science. The funding agency was not involved in the design, analysis, or interpretation of the data.

Author information

Authors and Affiliations

  1. Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Cedars-Sinai, 116 N. Robertson Blvd, PACT 800, Los Angeles, CA, 90048, USA

    Welmoed K. van Deen

  2. Gehr Family Center for Health Systems Science, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

    Welmoed K. van Deen

  3. Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

    Alexandra Obremskey

  4. Division of Gastrointestinal and Liver Diseases, Keck School of Medicine, University of Southern California, Los Angeles, CA, USA

    Graham Moore & Caroline Hwang

  5. Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands

    M. Elske van den Akker-van Marle

  6. Schaeffer Center for Health Policy and Economics, University of Southern California, Los Angeles, CA, USA

    Jason N. Doctor

Authors
  1. Welmoed K. van Deen
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  2. Alexandra Obremskey
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  3. Graham Moore
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  4. M. Elske van den Akker-van Marle
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  5. Jason N. Doctor
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  6. Caroline Hwang
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Contributions

WKD and CH conceived the study. WKD, AO, MEAM and JND designed the methodology, GM and CH collected data, WKD, AO and GM performed the data analyses, WKD and AO wrote the manuscript. All authors critically reviewed and revised the manuscript.

Corresponding author

Correspondence to Welmoed K. van Deen.

Ethics declarations

Conflict of interest

None of the authors disclose any conflicts of interest.

Ethical approval

This study was approved by the University of Southern California Institutional Review Board (IRB) under protocol number HS-17-00308.

Consent to participate

All participants were provided with an IRB-approved information sheet explaining the study procedures and verbally consented to participate in the survey. Written consent forms were obtained to extract medical information from the electronic medical record.

Consent for publication

All participants were informed that in any written reports or publications no one will be identified or identifiable and only aggregate data will be presented.

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van Deen, W.K., Obremskey, A., Moore, G. et al. An assessment of symptom burden in inflammatory bowel diseases to develop a patient preference-weighted symptom score. Qual Life Res 29, 3387–3396 (2020). https://doi.org/10.1007/s11136-020-02606-2

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  • DOI: https://doi.org/10.1007/s11136-020-02606-2

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