Page 113 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
and cognitively, and frequently experienced daytime fatigue. Pain, such as
knee pain or headache, was also often deemed important for discussion.
“I need to consider all activities I am involved in. For instance,
when I have a sports game, I must rest the day before and also
allow myself a few days for recovery.” [Focus group 5 – January
30, 2024]
Mental functioning
Individuals with (G)ID predominantly emphasized the importance of
discussing mental functioning during consultation. Anxiety frequently
emerged as a significant topic to discuss during consultation. Individuals
often experienced feelings of panic, stress, nervousness, restlessness, and
tension. Individuals also highlighted anger, sensory integration, and their
own behaviour such as aggressiveness, as crucial topics to address with
a HCP.
5
“I would like to discuss with a healthcare professional how I can
calm down when I am feeling anxious.” [Interview – February
23, 2023]
Social functioning
Difficulties with engaging in and sustaining relationships was frequently
mentioned as an important topic by individuals with (G)ID. These
relationships encompassed connecting with friends, family, and, in the case
of older participants, with a romantic partner. Individuals often experienced
a lack of relationships, and felt neglected by friends or family. They faced
challenges in trusting others, which consequently detained them from
pursuing relationships despite their desire for companionship.
“I would appreciate it when the doctor would carefully ask about
my relationships. This way, I do not have to start the conversation,
as it is a difficult topic for me.” [Interview – January 19, 2023]
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