Page 180 - Let them speak Towards a patient reported outcome measure set for

Chapter 7
Legacy questionnaires
Commonly used legacy questionnaires for individuals with GenID were
administered to compare their psychometric properties with those of the
core PROM set. Caregivers of children completed the Dutch version of the
Paediatric Quality of Life Inventory (PedsQL), which assesses children’s
health-related quality of life (48). The questionnaire consists of 23 items,
which cover four domains: physical functioning, emotional functioning, social
functioning, and school functioning. Items are scored on a 5-point Likert scale
and transformed to a 0 – 100 scale; higher scores indicate better functioning.
Adults and caregivers of adults completed the Dutch version of the Short
Form-36 Health Survey (SF-36), which assesses individual’s health status
(49). The questionnaire consists of 36 items, which cover eight domains:
physical functioning, role limitations due to physical health problems, role
limitations due to personal or emotional health problems, emotional well-
being, energy/fatigue, social functioning, bodily pain, and general health.
Items are scored on a 3-, 5- or 6-point Likert scale and transformed to a 0
– 100 scale; higher scores indicate better functioning.
Each participant group completed the Dutch version of an Achenbach
System of Empirically Based Assessment (ASEBA) questionnaire, which
measures behavioural, emotional and social problems and adaptive
characteristics (50). Caregivers of children completed the Child Behaviour
Checklist (CBCL), adults the Adult Self-Report (ASR), and caregivers of adults
the Adult Behaviour Checklist (ABCL). The CBCL includes 113 items; the ASR
and ABCL each contain 126 items. All versions cover eight syndrome scales:
anxious/depressed, withdrawn (withdrawn/depressed in CBCL), somatic
complaints, thought problems, attention problems, aggressive behaviour,
rule-breaking behaviour, social problems (CBCL only), and intrusive behaviour
(ASR/ABCL only). These scales contribute to internalizing, externalizing, and
total problems scores. Items are rated on a 3-point Likert scale and summed
to calculate total scores; higher total scores indicate more problems.
Statistical analyses
To assess participant characteristics, descriptive analyses were performed.
All further analyses were performed using the Statistical Package for Social
Sciences (SPSS) version 28.0.
178