Page 226 - Let them speak Towards a patient reported outcome measure set for

Chapter 8
focus is frequently solely on their child, with little or no attention paid to the
caregivers’ own well-being (7). Developing a core PROM set for caregivers
is therefore essential. It would help monitor their health and functioning,
enable earlier identification of caregiver burden, and guide the provision
of appropriate support. To develop this set, the most important PROs for
caregivers must first be identified, followed by the selection of PROMs to
measure these PROs. First efforts are being made at the Amsterdam UMC/
Emma Children’s Hospital to establish a core PROM set for caregivers.
Siblings of individuals with GID must also not be overlooked. They may
experience embarrassment associated with having a disabled brother or
sister, social exclusion by peers, and an increased sense of responsibility
and burden in providing care for their brother or sister (73, 74). A concise
core PROM set for siblings may also be valuable for monitoring their daily
functioning, identifying potential health problems, and guiding appropriate
sibling support. In addition, the serious game ‘Broodles’ may be offered to
siblings as a preventive, early support program (75, 76).
FAIR data management
The research described in this thesis was conducted in accordance with
relevant ethical guidelines. Data management adhered to the FAIR (Findability,
Accessibility, Interoperability, and Reusability) principles where possible.
All manuscripts were published or submitted open access. Supplementary
materials were provided in the manuscripts to enhance transparency and
reusability. Data are available from the corresponding author on reasonable
request. Data were collected and managed using secure software and web-
based platforms (Castor EDC, MAXQDA, research website Biomedia).
Conclusion
PROMs hold considerable promise for enhancing patient-centered care and
research for individuals with GID. This thesis contributes to the first selected
and psychometrically tested core PRO(M) set for children and adults with
GID. The PROs included in this set should guide clinical practice, research,
and policy development to ensure these are in line with the needs of affected
individuals. Incorporating the PROMs into routine care and research will
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