Improving the Care for Pediatric Transplant Patients through Integration of Patient-Reported Outcome Measures into Clinical Practice

Abstract

Subjective evaluation of medical care and treatment from the patient's perspective is increasingly important. Patient-reported outcome measures (PROMs) are "any report of the patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else" and can comprise information about symptoms, functional status, and quality of life. PROMs have the ability to engage patients meaningfully, give them a voice in their healthcare, and capture their experiences and attitudes. This study explores the perspectives of pediatric solid organ transplant patients, caregivers and healthcare providers on implementing PROMs into clinical practice. Semi-structured interviews were conducted at five Canadian pediatric transplant centres. Maximum variation sampling was used to provide concurring and confirming data, and ensure saturation. An iterative coding process was applied with constant comparative data analysis to identify themes. A total of 20 patients, 22 caregivers and 20 healthcare providers participated. Nearly all participants (n = 59, 95%) were supportive of implementing PROMs with the primary goals to 1) enhance patient-provider communication - "Opens conversations"; "[Patients] state what they're feeling", and 2) increase patient engagement - "Like you're part of the team". Participants discussed the potential impact of PROMs as the provision of preventative - "You'll be proactive", and holistic care - "You cannot separate medical from other aspects. [Patients] are struggling from a mental health perspective". Participants identified selected PROMs, the PedsQLTM Generic Core Scales - "Covers aspects I wouldn't usually include in my assessment" and the PedsQLTM Transplant Module - "More related to transplant patients". Recommendations included 1) PROM data collection for patients eight years of age and older, 2) remote administration and completion of electronic PROMs, prior to clinical appointments, and 3) visual data representation. Findings highlight support for the implementation of PROMs into pediatric solid organ transplantation. Future research is needed to develop implementation strategies to effectively integrate PROMs into clinical workflow and assess the impact on patient health outcomes.