Page 123 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
Discussion
In this study, relevant PROs were identified for individuals with (G)ID from
the perspective of individuals with (G)ID, caregivers, HCPs and European
patient representatives (collectively called clinical experts). Together with
two scoping reviews (35), this lays a thorough foundation for development
of a meaningful PRO set for (G)ID, aiming to harmonize PROs and guiding
care, research, and health policy. This meaningful PRO set enables the
integration of patient perspectives on their health into care and research
studies, and allows for relevant PROs to be combined and compared across
(G)ID groups. Identified PROs were related to all health domains, including
physical, mental, and social functioning. Themes related to the negative
impact of (G)ID were deemed important for discussion during consultation,
whereas themes related to the positive impact of (G)ID were generally not.
While individuals with (G)ID and caregivers mostly emphasized mental
functioning, clinical experts faced challenges in prioritizing health domains.
Nevertheless, all groups acknowledged the importance of addressing
mental functioning, in particular anxiety. This is in line with previous studies
in which individuals with (G)ID and caregivers stress the importance of
addressing mental health problems in care (23, 49, 50), and underscores
the ongoing need for research and intervention development in this field (51,
52). Still, many individuals with (G)ID face challenges in receiving suitable
and accessible mental health care due to fragmented ID and mental health
services, and a lack of knowledge on how to adapt mental health treatments
for those with (G)ID, often resulting in undiagnosed and untreated mental
health problems (53, 54).
A PRO particularly addressed by caregivers of adolescents, was sexual
functioning. These caregivers sought information and advice from HCPs
on addressing their child’s sexual development and sexual inappropriate
behaviours. While clinical experts acknowledged the importance of sexual
functioning, affected individuals did not, possibly due to the difficulty of
discussing it in a focus group or interview. Previous research found that
affected individuals often lack knowledge about sexuality, with often
limited opportunity for sexual expression and development, increasing their
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