IMPLEMENTING ROUTINE ELECTRONIC PATIENT-REPORTED OUTCOME MEASURES (EPROMS) FOR PATIENTS WITH PRIMARY TUMOURS OF THE CENTRAL NERVOUS SYSTEM

Le résumé fourni par la source

Abstract AIMS Electronic patient-reported outcome measures (ePROMs) are online questionnaires designed to collect patients’ self-reported information about their health. While the benefits of ePROMs in patient care are well-documented, their integration into routine clinical care remains limited, particularly for patients with central nervous sys- tem (CNS) tumours. This patient group faces unique challenges, including physical disabilities and cognitive changes that can hinder ePROMs usage. Here, we report on patient and clinician experiences with the initial implementation of a neuro-tailored ePROM. METHODS ePROMs questionnaires were sent to all patients attending neuro-oncology clinics three days before their ap- pointments via SMS/email. The questionnaire included 25 symptom questions adapted from CTCAE v5.0, EQ- 5D-5L, and Brain Tumour-Patient Concerns Inventory. Upon completion, patients received automated advice based on their responses. ePROMs responses are uploaded onto the electronic patient record for clinician re- view before each consultation. After three months, satisfaction surveys were distributed via SMS to patients who completed ePROMs at least once and to clinician users. RESULTS Of 653 ePROMs sent to 401 patients, 224 (34%) were completed by 151 patients. Of 147 patients surveyed, 39 (27%) responded. 92% (36/39) of patients found ePROMs easy to complete. 87% (34/39) found the time required to complete ePROMs appropriate. 74% (29/39) were able to complete ePROMs independently. 77% (30/39) found ePROMs useful as part of their care and felt better supported. 85% (33/39) were satisfied with ePROMs. Eight clinicians completed the survey and reported that ePROMs sometimes to always enhanced their consul- tation and contributed to management decisions, with 100% expressing overall satisfaction with the service. Three clinicians (38%) reported time constraints for discussing ePROMs results during consultations. CONCLUSION This initial evaluation indicates low completion rates but high satisfaction levels among patient and clinician users. Future efforts will aim to increase service awareness and gather feedback from non-users to identify barriers and develop support strategies.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.