Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians
- 388 Downloads
To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care.
101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children’s Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items).
Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33–6.01; p’s < 0.05) and three items in fatigue domain (ORs 2.22–3.80; p’s < .05) as more important but rated three items in psychological stress domain (ORs 0.14–0.42; p’s < .05) and six items in positive affect domain (ORs 0.17–0.35; p’s < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25–0.47; p’s < .05) as less important than did survivors.
Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools.
KeywordsCancer survivorship Fatigue Pain Patient-reported outcomes measurement information system Positive affect Psychological stress
This stud is supported by the National Cancer Institute (U.S.) Grants P30 CA021765-33 (Roberts C) and U01 CA195547 (Hudson MM & Robison LL) and National Institute of Arthritis and Musculoskeletal and Skin/National Institute of Health (U.S.) Grant U19 AR069525 (Forrest CB & Huang IC).
Compliance with ethical standards
Conflict of interest
The authors declare no conflict of interest.
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. St. Jude’s Children’s Research Hospital Institution Review Board approved the study protocol.
Written informed consent was obtained from all individual participants included in the study.
- 1.American Cancer Society (2014). Special section: Childhood & adolescent cancers. In American cancer society, cancer facts & figures 2014 (pp. 25–42). Atlanta, GA: American Cancer Society.Google Scholar
- 3.Cella, D., Yount, S., Rothrock, N., Gershon, R., Cook, K., Reeve, B., et al. (2007). The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care, 45(5 Suppl 1), S3–S11.Google Scholar
- 4.Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., et al. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. Journal of Clinical Epidemiology, 63(11), 1179–1194.CrossRefPubMedPubMedCentralGoogle Scholar
- 6.DeWalt, D. A., Gross, H. E., Gipson, D. S., Selewski, D. T., DeWitt, E. M., Dampier, C. D., et al. (2015). PROMIS((R)) pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Quality of Life Research, 24(9), 2195–2208.CrossRefPubMedPubMedCentralGoogle Scholar
- 7.Menard, J. C., Hinds, P. S., Jacobs, S. S., Cranston, K., Wang, J., DeWalt, D. A., & Gross, H. E. (2014). Feasibility and acceptability of the patient-reported outcomes measurement information system measures in children and adolescents in active cancer treatment and survivorship. Cancer Nursing, 37(1), 66–74.CrossRefPubMedGoogle Scholar
- 8.Matza, L. S., Patrick, D. L., Riley, A. W., Alexander, J. J., Rajmil, L., Pleil, A. M., & Bullinger, M. (2013). Pediatric patient-reported outcome instruments for research to support medical product labeling: Report of the ISPOR PRO good research practices for the assessment of children and adolescents task force. Value in Health, 16(4), 461–479.CrossRefPubMedGoogle Scholar
- 13.Waters, E. B., Wake, M. A., Hesketh, K. D., Ashley, D. M., & Smibert, E. (2003). Health-related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reports. International Journal of Cancer, 103(4), 514–518.CrossRefPubMedGoogle Scholar
- 14.Morrow, A. M., Hayen, A., Quine, S., Scheinberg, A., & Craig, J. C. (2012). A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care, Health and Development, 38(2), 186–195.CrossRefPubMedGoogle Scholar
- 21.Spencer, D. (2009). Card sorting: Designing usable categories. Brooklyn, NY: Rosenfeld Media.Google Scholar
- 22.DeWitt, E. M., Stucky, B. D., Thissen, D., Irwin, D. E., Langer, M., Varni, J. W., et al. (2011). Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: Built using item response theory. Journal of Clinical Epidemiology, 64(7), 794–804.CrossRefPubMedPubMedCentralGoogle Scholar
- 24.Ravens-Sieberer, U., Devine, J., Bevans, K., Riley, A. W., Moon, J., Salsman, J. M., & Forrest, C. B. (2014). Subjective well-being measures for children were developed within the PROMIS project: Presentation of first results. Journal of Clinical Epidemiology, 67(2), 207–218.CrossRefPubMedGoogle Scholar