Integration of Electronic Patient-Reported Outcomes (ePROs) Into Pediatric Clinic Settings Across Hematology/Oncology/Bone Marrow Transplant

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.