Page 120 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
Table 2. continued
Mental Anxiety, sensory integration,
behavior (including eating and
drinking behavior), anger, feeling
overwhelmed, communication,
depressive symptoms, self-
image, resilience, cognitive
functioning, trauma, self-
acceptance1, psychiatric
diagnoses (e.g., autism)
“When I am frightened, I am out of control”, “For
years, we did not celebrate his birthday because
he would get an over-reaction to all the stimuli”,
“He does not sit still for one moment”, “I can get
very angry at the people around me”, “I often
feel overwhelmed which creates chaos in my
head”, “It is so difficult for her to communicate
what she means”, “I feel sad when other people
do not understand me”, “Children often feel
differently which leads to a negative self-image”,
“X is too sweet for this world”, “When I do not
write things down, they disappear”, “He has a
trauma for blood sampling”, “I want to prove
myself”, “He has ADHD”
Feeling underwhelmed, gender
dysphoria1
“When individuals are not sufficiently
stimulated, they can exhibit restless behavior”,
“Gender dysphoria is receiving attention lately
among individuals with mild ID”
Social Relationships, social skills,
participation
“I have difficulties with maintaining
relationships”, “If you have had an argument,
how do you talk things out?”, “They do not have
any social activities that interest them”
Other Communication with HCP,
impact on family, family
planning, medication side-
effects1
“They HCP talks to my parents and not to me”,
“His sibling felt like a shadow child”, “Individuals
who have a desire to have children”, “The use of
medication can have side effects”
Incomprehension environment,
high healthcare costs, impact on
society1
“We did not feel understood as parents”, “In
some countries you have to pay for therapies”,
“(G)ID also has a major social impact”
1Theme mentioned once.
(G)ID, (genetic) intellectual disability; HCP, healthcare professional; STIs, sexually transmitted
infections; ADHD, attention deficit hyperactivity disorder; ID, intellectual disability.
PROs are written in bold.
 Overlap: themes mentioned as impact of (G)ID and as important to discuss by one of the
participant groups.
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