Page 115 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
“I wish more attention had been given to behavioural problems.
How could I have best helped my child at that time?” [Focus
group 4 – January 23, 2023]
Social functioning
Relationships and participation were both mentioned as important topics.
Caregivers noted that their child encountered challenges in maintaining
relationships (with peers), expressed fear of connecting with others, and at
times exhibited a lack of interest in forming relationships. Participating in
activities was also a topic of concern, as this needed more supervision, or
affected individuals lacked adequate social skills or motivation to actively
engage in activities with others.
“He’s not permitted to play soccer with his peers because he
does not understand the game. As a mother, that hurts me. I
would like to discuss with the HCP how to address this situation.”
[Focus group 7 – February 9, 2023]
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Other
Caregivers highlighted communication with HCPs as crucial, often feeling
unheard, dismissed, or misunderstood. They also emphasized the importance
of discussing the impact of (G)ID on the family, reporting that they sometimes
felt overlooked by HCPs. Caregivers noted the constant need to adjust to
the affected individual’s needs. They also reported feeling stressed due to
uncertainties surrounding the disorder, concerns about the future of their
child, and frequent hospital visits. They noted that siblings were affected as
well, frequently feeling overshadowed by the child with (G)ID.
“What is very important to me is that parents are taken seriously”
[Focus group 1 – January 10, 2023]
Clinical experts
Physical functioning
Clinical experts identified sleep as an important topic for discussion, noting
that individuals with (G)ID often experienced difficulties falling asleep and
sleeping through the night, early awakening, disrupted sleep patterns,
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