Salene M W Jones1, Joseph M Unger2. 1. Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA. Electronic address: smjones3@fredhutch.org. 2. Division of Public Health Sciences, Fred Hutchinson Cancer Research Center, Seattle, Washington, USA.
Abstract
CONTEXT: Most patient-reported outcomes (PRO) are not directly tailored to an individual patient's values, partially because tailored PROs require clinical interviews or are difficult to use in statistical analyses. OBJECTIVES: This study tested a method for tailoring pain PROs, Precision PROs, that can be implemented, and analyzed using standard statistical tests. METHODS: People with cancer and pain (n = 231) completed an online survey and then a second survey (n = 161) one to two weeks later. Participants reviewed the PROMIS pain interference item bank, chose the four items most important to their quality of life, and then completed those items. Kappas compared choices between the two surveys. Participants completed measures of pain intensity, physical function, and a standard pain interference measure. RESULTS: All participants were able to select four items that were personally meaningful. Only one item (enjoyment of life) was chosen by more than half the sample (50.6%). Kappas for item choice were in the moderate to nearly perfect range for 32 of 35 items. The majority of the sample (59%) preferred tailoring their own PRO questions to completing a previously determined, non-patient-specific PRO. The Precision PRO scores had similar associations with pain intensity and physical function as the standard pain interference measure. CONCLUSION: The Precision PRO approach was feasible, more preferred by patients, and showed consistency over a short timeframe. This approach could be used to make PRO assessment in clinical care and clinical trials more patient-centered. Additional research is needed to determine the generalizability of this approach to other outcomes and populations.
CONTEXT: Most patient-reported outcomes (PRO) are not directly tailored to an individual patient's values, partially because tailored PROs require clinical interviews or are difficult to use in statistical analyses. OBJECTIVES: This study tested a method for tailoring pain PROs, Precision PROs, that can be implemented, and analyzed using standard statistical tests. METHODS: People with cancer and pain (n = 231) completed an online survey and then a second survey (n = 161) one to two weeks later. Participants reviewed the PROMIS pain interference item bank, chose the four items most important to their quality of life, and then completed those items. Kappas compared choices between the two surveys. Participants completed measures of pain intensity, physical function, and a standard pain interference measure. RESULTS: All participants were able to select four items that were personally meaningful. Only one item (enjoyment of life) was chosen by more than half the sample (50.6%). Kappas for item choice were in the moderate to nearly perfect range for 32 of 35 items. The majority of the sample (59%) preferred tailoring their own PRO questions to completing a previously determined, non-patient-specific PRO. The Precision PRO scores had similar associations with pain intensity and physical function as the standard pain interference measure. CONCLUSION: The Precision PRO approach was feasible, more preferred by patients, and showed consistency over a short timeframe. This approach could be used to make PRO assessment in clinical care and clinical trials more patient-centered. Additional research is needed to determine the generalizability of this approach to other outcomes and populations.
Authors: C Benedetti; C Brock; C Cleeland; N Coyle; J E Dubé; B Ferrell; S Hassenbusch; N A Janjan; M J Lema; M H Levy; M J Loscalzo; M Lynch; C Muir; L Oakes; A O'Neill; R Payne; K L Syrjala; S Urba; S M Weinstein Journal: Oncology (Williston Park) Date: 2000-11 Impact factor: 2.990
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