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A qualitative inquiry into patients’ perspectives on individualized priorities for treatment outcomes in inflammatory bowel diseases

Abstract

Purpose

Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients’ preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients’ perspectives on different strategies to prioritize IBD-specific health outcomes.

Methods

Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data.

Results

Patients’ thoughts could be grouped into four key themes with 2–4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician.

Conclusion

In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.

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References

  1. Farrell, D., McCarthy, G., & Savage, E. (2016). Self-reported symptom burden in individuals with inflammatory bowel disease. Journal of Crohn's and Colitis, 10(3), 315–322. https://doi.org/10.1093/ecco-jcc/jjv218.

    PubMed  Article  Google Scholar 

  2. IsHak, W. W., Pan, D., Steiner, A. J., Feldman, E., Mann, A., Mirocha, J., et al. (2017). Patient-reported outcomes of quality of life, functioning, and GI/psychiatric symptom severity in patients with inflammatory bowel disease (IBD). Inflammatory Bowel Diseases, 23(5), 798–803. https://doi.org/10.1097/MIB.0000000000001060.

    PubMed  Article  Google Scholar 

  3. Porter, M. E., & Lee, T. H. (2013). The strategy that will fix health care. Harvard Business Review, 91(12), 24–24.

    Google Scholar 

  4. Nelson, E. C., Dixon-Woods, M., Batalden, P. B., Homa, K., Van Citters, A. D., Morgan, T. S., et al. (2016). Patient focused registries can improve health, care, and science. BMJ, 354, i3319.

    PubMed  PubMed Central  Article  Google Scholar 

  5. Association, A. D. (2004). The breakthrough series: IHI’s collaborative model for achieving breakthrough improvement. Diabetes Spectrum, 17(2), 97–101.

    Article  Google Scholar 

  6. Alrubaiy, L., Rikaby, I., Dodds, P., Hutchings, H. A., & Williams, J. G. (2015). Systematic review of health-related quality of life measures for inflammatory bowel disease. Journal of Crohn's and Colitis, 9(3), 284–292. https://doi.org/10.1093/ecco-jcc/jjv002.

    PubMed  Article  Google Scholar 

  7. Alrubaiy, L., Rikaby, I., Sageer, M., Hutchings, H. A., & Williams, J. G. (2015). Systematic review of the clinical disease severity indices for inflammatory bowel disease. Inflammatory Bowel Diseases, 21(10), 2460–2466. https://doi.org/10.1097/MIB.0000000000000438.

    PubMed  Article  Google Scholar 

  8. de Jong, M. J., Huibregtse, R., Masclee, A. A. M., Jonkers, D. M. A. E., & Pierik, M. J. (2018). Patient-reported outcome measures for use in clinical trials and clinical practice in inflammatory bowel diseases: A systematic review. Clinical Gastroenterology and Hepatology, 16(5), 648–663.e643. https://doi.org/10.1016/j.cgh.2017.10.019.

    PubMed  Article  Google Scholar 

  9. Pittet, V., Vaucher, C., Froehlich, F., Burnand, B., Michetti, P., Maillard, M. H., et al. (2017). Patient self-reported concerns in inflammatory bowel diseases: A gender-specific subjective quality-of-life indicator. PLoS ONE, 12(2), e0171864. https://doi.org/10.1371/journal.pone.0171864.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  10. Donnelly, C., & Carswell, A. (2002). Individualized outcome measures: A review of the literature. Canadian Journal of Occupational Therapy, 69(2), 84–94. https://doi.org/10.1177/000841740206900204.

    Article  Google Scholar 

  11. Reuben, D. B., & Tinetti, M. E. (2012). Goal-oriented patient care—An alternative health outcomes paradigm. The New England Journal of Medicine, 366(9), 777–779. https://doi.org/10.1056/NEJMp1113631.

    CAS  PubMed  Article  Google Scholar 

  12. Patel, K. K., Veenstra, D. L., & Patrick, D. L. (2003). A review of selected patient-generated outcome measures and their application in clinical trials. Value Health, 6(5), 595–603. https://doi.org/10.1046/j.1524-4733.2003.65236.x.

    PubMed  Article  Google Scholar 

  13. Bradley, C., Todd, C., Gorton, T., Symonds, E., Martin, A., & Plowright, R. (1999). The development of an individualized questionnaire measure of perceived impact of diabetes on quality of life: The ADDQoL. Quality of Life Research, 8(1–2), 79–91.

    CAS  PubMed  Article  Google Scholar 

  14. McGee, H. M., O'Boyle, C. A., Hickey, A., O'Malley, K., & Joyce, C. R. (1991). Assessing the quality of life of the individual: The SEIQoL with a healthy and a gastroenterology unit population. Psychological Medicine, 21(3), 749–759.

    CAS  PubMed  Article  Google Scholar 

  15. Ruta, D. A., Garratt, A. M., & Russell, I. T. (1999). Patient centred assessment of quality of life for patients with four common conditions. Quality in Health Care, 8(1), 22–29.

    CAS  PubMed  Article  Google Scholar 

  16. Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life: The Patient-Generated Index. Medical Care, 32, 1109–1126.

    CAS  PubMed  Article  Google Scholar 

  17. Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.

    CAS  Article  Google Scholar 

  18. Neergaard, M. A., Olesen, F., Andersen, R. S., & Sondergaard, J. (2009). Qualitative description–The poor cousin of health research? BMC Medical Research Methodology, 9(1), 52.

    PubMed  PubMed Central  Article  Google Scholar 

  19. Kim, H., Sefcik, J. S., & Bradway, C. (2017). Characteristics of qualitative descriptive studies: A systematic review. Research in Nursing & Health, 40(1), 23–42.

    CAS  Article  Google Scholar 

  20. Patton, M. Q. (2005). Qualitative research. New York: Wiley Online Library.

    Google Scholar 

  21. Melmed, G. Y., Siegel, C. A., Spiegel, B. M., Allen, J. I., Cima, R., Colombel, J. F., et al. (2013). Quality indicators for inflammatory bowel disease: Development of process and outcome measures. Inflammatory Bowel Diseases, 19(3), 662–668. https://doi.org/10.1097/mib.0b013e31828278a2.

    PubMed  Article  Google Scholar 

  22. O'Boyle, C. A., Browne, J., Hickey, A., McGee, H. M., & Joyce, C. R. B. (1993). The schedule for the evaluation of individual quality of life (SEIQoL): A direct weighting procedure for quality of life domains (SEIQoL-DW) Administration Manual.

  23. O’Boyle, C. A. (1994). The schedule for the evaluation of individual quality of life (SEIQoL). International Journal of Mental Health, 23(3), 3–23.

    Article  Google Scholar 

  24. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Article  Google Scholar 

  25. Johnson, F. R., Lancsar, E., Marshall, D., Kilambi, V., Mühlbacher, A., Regier, D. A., et al. (2013). Constructing experimental designs for discrete-choice experiments: Report of the ISPOR conjoint analysis experimental design good research practices task force. Value in Health, 16(1), 3–13.

    Article  Google Scholar 

  26. Mark, T. L., & Swait, J. (2004). Using stated preference and revealed preference modeling to evaluate prescribing decisions. Health Economics, 13(6), 563–573.

    PubMed  Article  Google Scholar 

  27. Siegel, C. A. (2012). Shared decision making in inflammatory bowel disease: Helping patients understand the tradeoffs between treatment options. Gut, 61(3), 459–465.

    PubMed  Article  Google Scholar 

  28. Peyrin-Biroulet, L., Sandborn, W., Sands, B., Reinisch, W., Bemelman, W., Bryant, R., et al. (2015). Selecting therapeutic targets in inflammatory bowel disease (STRIDE): Determining therapeutic goals for treat-to-target. The American Journal of Gastroenterology, 110(9), 1324.

    CAS  PubMed  Article  Google Scholar 

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Acknowledgements

This work was supported by funds from the Crohn’s and Colitis Foundation (New York, NY). Data collection for this project was facilitated by IBD Qorus. Plastic disks were obtained from L’Atelier de l’Évaluation (Saint-Sauvant, France). We would like to thank our focus group participants for their contribution and Dr. Carine Khalil for her advice on the qualitative content analysis.

Funding

This work was supported by funds from the Crohn’s and Colitis Foundation (New York, NY).

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Authors and Affiliations

Authors

Contributions

Conception and design: WKvD, SAW, GYM, CAS; Data collection, WKvD, BK, DJC, MHK, SAS; Data analysis: WKvD, BK; Manuscript preparation WKvD, SAS, GYM, CAS. All authors commented on previous versions of the manuscript and read and approved the final manuscript.

Corresponding author

Correspondence to Welmoed K. van Deen.

Ethics declarations

Conflict of interest

WKvD: Grant Funding from Crohn's and Colitis Foundation; SAW: Employee of the Crohn’s and Colitis Foundation; GYM: Consultant: Abbvie, Boehringer-Ingelheim, Celgene, Janssen, Pfizer, Samsung Bioepis, Takeda; CAS: Consultant/Advisory Board: Abbvie, Amgen, BMS, Celgene, Lilly, Janssen, Sandoz, Pfizer, Prometheus, Sebela, Takeda; Speaker for CME activities: Abbvie, Celgene, Janssen, Pfizer, Takeda; Grant support: Crohn’s and Colitis Foundation, AHRQ (1R01HS021747-01), Broad Medical Research Program, Abbvie, Janssen, Pfizer, Takeda; Intellectual property: MiTest Health, LLC has a patent pending for a “System and Method of Communicating Predicted Medical Outcomes”, filed 3/24/10. Dr. Corey Siegel and Dr. Lori Siegel are inventors; Equity Interest: Dr. Corey Siegel and Dr. Lori Siegel are co-founders of MiTest Health, LLC. BK, DJC, MHK and SAS do not have any financial disclosures or conflict of interest to report.

Ethical approval

Institutional Review Board (IRB) approval was obtained for all participating sites: Gastroenterology Associates relied on the University of Southern California IRB under protocol number HS-18-00424. The Cedars-Sinai Medical Center IRB approved this under protocol number Pro00054443 and the Dartmouth-Hitchcock Medical Center approved it under protocol number STUDY00031555. All procedures performed in studies involving human participants were in accordance with the ethical standards of these IRBs and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All participants were provided with an information sheet and verbally consented to participate in this study.

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van Deen, W.K., Kiaei, B., Weaver, S.A. et al. A qualitative inquiry into patients’ perspectives on individualized priorities for treatment outcomes in inflammatory bowel diseases. Qual Life Res 29, 2403–2414 (2020). https://doi.org/10.1007/s11136-020-02492-8

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  • DOI: https://doi.org/10.1007/s11136-020-02492-8

Keywords

  • Inflammatory bowel diseases
  • Individualized outcome measures
  • Patient preferences
  • Health outcomes