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
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.
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.
Porter, M. E., & Lee, T. H. (2013). The strategy that will fix health care. Harvard Business Review, 91(12), 24–24.
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.
Association, A. D. (2004). The breakthrough series: IHI’s collaborative model for achieving breakthrough improvement. Diabetes Spectrum, 17(2), 97–101.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.
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.
Kim, H., Sefcik, J. S., & Bradway, C. (2017). Characteristics of qualitative descriptive studies: A systematic review. Research in Nursing & Health, 40(1), 23–42.
Patton, M. Q. (2005). Qualitative research. New York: Wiley Online Library.
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.
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.
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.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
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.
Mark, T. L., & Swait, J. (2004). Using stated preference and revealed preference modeling to evaluate prescribing decisions. Health Economics, 13(6), 563–573.
Siegel, C. A. (2012). Shared decision making in inflammatory bowel disease: Helping patients understand the tradeoffs between treatment options. Gut, 61(3), 459–465.
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.
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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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.
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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