Integration of electronic patient-reported outcomes (ePROs) into pediatric clinic settings across hematology/oncology/bone marrow transplant.

Abstract

Despite the benefits of patient reported outcomes (PROs), the systematic use of PRO assessment in clinical care is rare. The goal of this pilot project was to examine the feasibility of PRO assessment via the Patient Reported Outcomes Measurement Information System-Computerized Adaptive Testing (PROMIS-CAT) within pediatric hematology, oncology, and bone marrow transplant (BMT) clinic settings. Fifty-one patients (ages 5 to 26 years), 53 parents, and 13 medical providers were recruited successfully. After patients and parents completed the PROMIS-CAT on electronic tablets, patients, parents, and medical providers completed questionnaires regarding acceptability, burden, and potential barriers with electronic PRO assessment within the clinic setting. The majority of patients (72%) and parents (70%) endorsed positive acceptability with completing the PROMIS-CAT. Patients and parents found the assessment easy to use and the questions understandable relative to the enjoyableness and helpfulness of the measure. Positive acceptability findings from the medical providers (25% satisfied) were lower than expected. Completion of electronic PRO assessment did not appear to add significant burden to patients, families, or the clinic workflow. Technological issues, comprehension of questions, and medical provider confusion with interpretation of the original score report of the PROMIS-CAT were identified as potential barriers with capturing PROs in the clinics. Overall, this study supports the feasibility of collecting PROs in real time in a clinic setting as patients, parents, and medical providers found the assessment acceptable and of low burden, and minimal barriers with the integration of PRO assessment within a clinic setting were identified.

Health‐related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease

“…A number of observational and randomized controlled trials have shown clear benefits to routine HRQOL monitoring . The time needed for our participants to complete each HRQOL measure was comparable to that previously published for acquiring PROMIS ® data . Given our experience, it is worth noting that the digital platform used for data collection and Wi‐Fi access could affect the feasibility of completing the PROMIS‐CAT assessments electronically in the clinic setting.…”

“…23 Moreover, symptoms reported by pediatric cancer patients were more accurately detected using HRQOL measures in the outpatient setting, compared with standard clinician interviews. 24 Myrvik et al 25 found the electronic measurement of HRQOL in the pediatric outpatient setting to be feasible, including hematology, oncology, and stem cell transplant (SCT) clinics; however, the study included only a small number of patients with SCD. The feasibility of Internet-based electronic assessment of HRQOL measures using tablets as part of the routine care in sickle cell clinics while maintaining workflow has not been well established.…”

Provider perceptions of the value of same-day, electronic patient-reported measures for use in clinical HIV care

“…While provider acceptability of PROs has varied by medical discipline and across types of care (Myrvik, 2013; Stover et al, 2015), provider acceptability in clinical HIV care is not well known.…”

Patient-reported outcomes in clinical practice

“…A pilot study in pediatric sickle cell, oncology, and bone marrow transplant patients confirmed the feasibility of obtaining electronic PROs in the pediatric clinic setting. 29 Electronic PROs were captured on tablets in the clinic waiting room and the results of the PROs were provided to the clinicians during the visit. Cincinnati Children's Hospital has adopted a tablet and kiosk-based system to collect PROs in their outpatient clinics under an initiative to improve quality of care, demonstrating feasibility within a large pediatric healthcare system and diverse patient populations.…”