Page 107 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
the investigator to contact them directly. The investigator provided a
detailed overview of the study to interested participants and addressed
any questions. Participant eligibility was assessed. In addition, interested
participants received a comprehensive information letter about the study.
Easy-read versions, using simplified language and pictographs, were
provided for individuals with ID.
Inclusion criteria for individuals with (G)ID were a diagnosis of ID with
or without a known aetiology, being 12 years or older, having effective
communication skills to articulate thoughts and feelings, and exhibiting
proficiency in Dutch. The inclusion criterion for caregivers was that they
provide care and support to an individual with (G)ID. HCPs were required to
have a minimum of five years of experience working with individuals with
(G)ID, and European patient representatives needed to have at least five
years of experience with a patient organization dedicated to (G)ID.
Procedure
Focus groups were conducted separately with adolescents with (G)ID,
adults with (G)ID, caregivers, HCPs, and European patient representatives.
Participants could, if preferred, also participate in a one-on-one interview.
Informed consent was signed by the participants prior to starting the focus
group or interview. Socio-demographic information was collected through
a short questionnaire prior or after the focus group or interview. Focus
groups and interviews with individuals with (G)ID, caregivers, and HCPs
were performed at the Amsterdam UMC in the Netherlands or online. Focus
groups with European patient representatives were performed online.
Individuals with (G)ID were allowed to have a caregiver present during
the focus group or interview if desired. The duration of focus groups was
approximately 1.5 hours, and that of interviews 30 minutes. The aim was to
include three to six participants in each focus group (39). All focus groups
and interviews were audio recorded. Individuals with (G)ID and caregivers
received a gift card of 10 euros after participation.
Focus groups were moderated by a female investigator (NvS) and a female
assistant (MvM, MKH, TvG, AG, or SL), all of whom were PhD candidates
or post-doctoral researchers with a background in psychology, medicine,
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