Page 116 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
restless sleep, and sleep apnoea. Epilepsy was also highlighted as a critical
topic.
“For instance, if there are issues during the bedtime routine, we
can consider how to provide support and make the bedtime
routine as clear as possible.” [Focus group 8 – February 21,
2023]
Mental functioning
Mental functioning was most frequently mentioned by clinical experts, even
though they did emphasize the importance of discussing all health domains
during consultation. Behaviour was mentioned as an important topic to
discuss. Clinical experts reported that individuals with (G)ID often exhibited
externalizing behaviour such as aggression, claiming behaviour towards
their caregiver or peers, self-mutilation, manipulative behaviour, repetitive
behaviour, hyperactivity, impulsivity, impatience, and abnormal eating and
drinking behaviour. Internalizing behaviour, such as withdrawal or passivity,
was reported as well. Clinical experts also emphasized the importance of
addressing anxiety during consultation. They mentioned various types of
anxiety, such as fear of sleep, separation anxiety, medical anxiety, or social
anxiety.
“I often see patients with challenging behaviour, so this is always
an important topic to address.” [Focus group 8 – February 21,
2023]
Social functioning
Clinical experts mentioned participation as an important topic for
discussion, noting that affected individuals often face participation
limitations, leading to isolation. They particularly expressed concern for
adults, who may not receive the same encouragement from caregivers as
children do. Relationships were also highlighted as an important topic to
discuss, with individuals often experiencing difficulties establishing and
maintaining them.
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