Page 114 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
Other
Another topic brought up was communication with HCPs. Individuals with
(G)ID reported to feel ignored or not treated as equals by HCPs. Individuals
often felt that HCPs assumed they would not understand the information
discussed, leading to a preference for communicating with their caregivers
instead of directly with them.
“When I am with my caregiver at the doctor’s office, the doctor
only talks to my caregiver. I find that so upsetting.” [Focus group
6 – February 7, 2023]
Caregivers
Physical functioning
Epilepsy was reported by caregivers as a significant concern, highlighting
the need for guidance on managing seizures and understanding the efficacy
and potential side-effects of anti-epileptic drugs. Sexual functioning was
notably emphasized by caregivers of adolescents or young adults with
(G)ID, who sought information and advice of HCPs on addressing sexual
development and inappropriate sexual behaviours, such as masturbating
in public.
“He turned out to have small seizures that where invisible from
the outside but had a significant impact on his behaviour.”[Focus
group 4 – January 23, 2023]
Mental functioning
Caregivers predominantly emphasized the importance of discussing
mental functioning during consultation. Behavioural problems and anxiety
were for caregivers critical topics for discussion. Many caregivers perceived
behavioural problems as the primary burden affecting the entire family. They
mainly reported externalizing behaviour, such as annoying others, being
aggressive (e.g., screaming, hitting, kicking, pulling hair, biting or throwing
things), and self-mutilation. Anxiety was also frequently mentioned, with
caregivers emphasizing the difficulty of addressing this issue with their
child.
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