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Assessing and Discussing Pain in the Hemophilia Clinic: Acceptability and Feasibility of the Patient-Reported Outcomes Measurement Information System (PROMIS) Measures of Pain Intensity, Interference and Behavior in Adult Males with Hemophilia Tyler W.Buckner. University of Colorado School of Medicine, Aurora, CO, USA

Abstract

Background: Pain is common in persons with hemophilia (PWH) and has numerous negative impacts on health-related quality of life. Routine assessment of pain is an essential aspect of pain management that is often perceived as difficult to incorporate into comprehensive hemophilia treatment center clinics. Successful implementation of pain assessment practices requires choosing measures that are robust, acceptable (easy to use and useful) to patients and clinicians, and feasible. Objective: To assess the feasibility and acceptability of implementing in-clinic and at-home pain assessments for PWH. Methods: Adult males with congenital hemophilia A or B attending consecutive, routine clinical visits at a single center were invited to enroll in this study. After providing informed consent and prior to starting their clinic visits, participants completed PROMIS Pain Intensity Short Form 3a, Pain Interference Bank v1.1 computerized adaptive test (CAT), and Pain Behavior Bank 2.0 CAT using an electronic device. Results of these measures were calculated as normalized T-scores with a mean of 50 and standard deviation (SD) of 10, referenced to the US general population. Scores were plotted on a data visualization graphic (Figure 1), which was printed and provided to clinicians for use during clinic visits. Participants and clinicians completed follow up questionnaires assessing perceived usefulness and ease of use (acceptability) after completion of clinic visits, using a 5-point Likert scale ranging from “strongly disagree” to “strongly agree.” For at-home pain assessments, enrolled participants completed PROMIS measures via a secure, web-based interface at 4, 8, and 12 weeks after enrollment and with report of any bleeding event during the follow up period. Results: Forty-seven patients enrolled in the in-clinic portion of the study between August 2019 and March 2020. Participants completed the PROMIS Pain Intensity, Pain Interference, and Pain Behavior measures in mean (SD) times of 1.0 (1.3), 1.2 (1.1), and 1.6 (1.7) minutes, respectively. Pain measure results were made available to clinicians prior to 100% of clinic visits, and results were discussed during 100% of visits. A majority of participants (94%) and clinicians (89%) “strongly agreed” that results were easy to discuss, and most participants (81%) and clinicians (66%) “somewhat agreed” or “strongly agreed” that discussing results was useful. Ninety-eight percent of participants and clinicians either somewhat or strongly agreed that there was adequate time to discuss results of PROs during clinic visits. Almost all participants (87%) and clinicians (91%) somewhat or strongly agreed that they would use PROMIS pain measures again in the future. One hundred seven participants enrolled in the 12-week longitudinal study, and 74 (69%), 75 (70%), and 70 (65%) participants completed pain measures at 4, 8, and 12 weeks, respectively. Thirty-four bleeding events were reported during the 12 weeks of follow up, and participants completed pain measures for 32 of 34 (94%) of these events. Conclusions: Administering PROMIS pain measures and providing results for use during clinic visits was feasible, and the results were rated as easy to use by almost all participants. The large majority of pain-related discussions were rated as useful by participants and clinicians.

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