Page 105 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
To address these issues, harmonization of PROs for (G)ID is needed.
Utilizing a meaningful PRO set is essential for delivering patient-centred,
high-quality care and research. It also aligns with other efforts in the general
population to standardize PROs and PROMs across patient groups, settings,
and countries (36). Therefore, this study aims to identify relevant PROs for
(G)ID, all from the perspective of affected individuals, caregivers, healthcare
professionals (HCPs), and European patient representatives. This study
represents one of the initial steps towards developing a meaningful PRO
set for (G)ID (37).
Methods
To identify relevant PROs for individuals with (G)ID, a qualitative study
including in-person and digital focus groups and interviews was performed
(Figure 1). The consolidated criteria for reporting qualitative studies
(COREQ) checklist was utilized as a reporting framework (38). The
individual with (G)ID, their caregiver, and/or HCP assessed the individual’s
ability to participate in a focus group or interview. Individuals with (G)ID
and caregivers were selected using purposive sampling based on age,
genetic diagnosis, and level of ID (of their child) (1). HCPs were selected
using purposive sampling based on their profession (e.g., ID physician,
psychologist, or nurse). European patient representatives were selected
using convenience sampling.
5
103