Page 124 - Let them speak Towards a patient reported outcome measure set for

Chapter 5
vulnerability to sexual abuse, sexually transmitted diseases, or unwanted
pregnancies (55). Addressing sexual functioning in care may be a crucial
first step towards raising awareness and supporting the sexuality of
individuals with (G)ID.
Important themes - but no PROs
While numerous important themes emerged, not all of them classified
as PROs, as they did not represent health aspects reported by patients
(See Table 2) (48). One of those themes was behaviour, which was often
mentioned by both clinical experts and caregivers as a critical topic. Previous
studies showed that behavioural problems can significantly impact the
individual and the whole family, leading to, for instance, increased stress
levels among parents (56, 57). Although important, behavioural problems
are manifestations of underlying health issues, such as anxiety or pain,
and should therefore not be classified as a PRO. Moreover, behaviour is
generally reported by someone other than the patient (e.g., caregiver) (58).
Another key theme was the impact of (G)ID on the family, primarily mentioned
by caregivers and clinical experts. Caregivers often felt overlooked by
HCPs, despite the burden of living with and caring for an individual with
(G)ID. Previous research indicated that psychological support for parents
can improve their mental health, as well as their child’s functioning (59),
underscoring the importance of family-centred care. However, the impact
on family functioning should not be classified as a PRO, as it does not pertain
to the affected individual’s health. Additionally, the impact specifically on
parents/caregivers should be classified as a parent reported outcome
(ParRO) (or caregiver reported outcome), as it pertains to the health of the
parent/caregiver (60).
Both individuals with (G)ID and caregivers emphasized communication
with the HCP as crucial, which is a process outcome. They often felt ignored
or unheard by HCPs, underscoring the need for discussing PROs with
affected individuals or their caregivers during consultations and involving
them in healthcare decision-making. This theme pertains to the overall care
experience of individuals with (G)ID and their caregivers, and therefore does
not classify as PRO (61).
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