Page 112 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
Focus groups and interviews
Focus groups and interviews were conducted between January 2023
and July 2023. Part 1 explored the impact of (G)ID on daily life to help
participants identify relevant consultation themes for part 2. For that
reason, themes from part 1 are aggregated across all participant groups.
HCPs and European patient representatives are merged into one participant
group; clinical experts. Predominant themes from part 2 are described per
participant group and health domain. All themes are described in Table 2.
Part 1 - Impact of (G)ID on daily life
Participants emphasized that (G)ID could impact various health domains
both positively and negatively. Examples of predominant themes are
described below.
Positive impact. Participants reported that (G)ID could have a positive
impact on different health domains, including mental functioning (e.g.,
positive attitude) and social functioning (e.g., connecting with others).
Other reported themes included strong social support for the affected
individual and their family, as well as effective expectation management
and adjustment by the environment of the affected individual.
Negative impact. Participants reported that (G)ID had a negative impact
on all health domains, including physical functioning (e.g., performing
activities), mental functioning (e.g., sensory integration), and social
functioning (e.g., social skills). Other commonly reported themes were
impact on family well-being and not feeling understood or heard by the HCP
(both from the perspective of individuals with (G)ID and caregivers).
Part 2 – Wish to discuss with a HCP
Participants highlighted the importance of discussing themes across all
health domains (physical, mental, and social functioning) with a HCP. The
most frequently mentioned themes are described below.
Individuals with (G)ID
Physical functioning
Individuals with (G)ID frequently indicated that fatigue was an important
topic to discuss. Individuals reported feeling easily tired, both physically
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