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General discussion
19. Pouls KP, Cuypers M, Mastebroek M, Wieland J, Koks-Leensen MC, Leusink GL, et al. Mental
healthcare for adults with mild intellectual disabilities: population-based database study in
Dutch mental health services. BJPsych Open. 2023;9(2):e48.
20. Vereenooghe L, Flynn S, Hastings RP, Adams D, Chauhan U, Cooper S-A, et al. Interventions for
mental health problems in children and adults with severe intellectual disabilities: a systematic
review. BMJ open. 2018;8(6):e021911.
21. Borland R, Hu N, Tonge B, Einfeld S, Gray K. Participation in sport and physical activity in adults
with intellectual disabilities. Journal of Intellectual Disability Research. 2020;64(12):908–22.
22. DaWalt LS, Usher LV, Greenberg JS, Mailick MR. Friendships and social participation as
markers of quality of life of adolescents and adults with fragile X syndrome and autism.
Autism. 2019;23(2):383–93.
23. Knapen J, Bottenheft E, Zonneveld E, Aussems C, Boeije H. Nivel Participatiemonitor 2010-
2020. 2023.
24. Health USDo, Human Services FDACfDE, Research, Health USDo, Human Services FDACfBE,
Research, et al. Guidance for industry: patient-reported outcome measures: use in medical
product development to support labeling claims: draft guidance. Health and Quality of Life
Outcomes. 2006;4(1):79.
25. Almeida A, Martins T, Lima L. Patient-reported outcomes in sarcoma: a scoping review.
European Journal of Oncology Nursing. 2021;50:101897.
26. Dutch Flemish PROMIS [Available from: https://dutchflemishpromis.nl/.
27. Intro to PROMIS [Available from: https://www.healthmeasures.net/explore-measurement-
systems/promis/intro-to-promis.
28. Handreiking generieke PROMs: Kennisplatform Uitkomstgerichte Zorg; [Available
from: https://www.platformuitkomstgerichtezorg.nl/themas/inzicht+in+uitkomsten/
handreiking+generieke+proms.
29. The ICHOM Set of Patient-Centered Outcome Measures for Neurodevelopmental
Disorders [Available from: https://www.ichom.org/patient-centered-outcome-measure/
neurodevelopmental-disorders/.
30. Mindham J, Espie C. Glasgow Anxiety Scale for people with an Intellectual Disability (GAS‐ID):
Development and psychometric properties of a new measure for use with people with mild
intellectual disability. Journal of Intellectual Disability Research. 2003;47(1):22–30.
31. Hamers PC, van Ool JS, Festen DA, Hendriksen JG, Bindels PJ, Hermans H. Reliability and
validity of the Dutch Anxiety, Depression And Mood Scale in adults aged< 50 years with
intellectual disabilities. Journal of Applied Research in Intellectual Disabilities. 2019;32(3):568–
74.
32. Luijten MA, Schalet BD, Roorda LD, Haverman L, Terwee CB. Reducing patient burden of
PROMs in healthcare through advanced computerized adaptive testing stopping rules. Quality
of Life Research. 2025:1–10.
33. Kruithof K, Willems D, van Etten‐Jamaludin F, Olsman E. Parents’ knowledge of their child with
profound intellectual and multiple disabilities: An interpretative synthesis. Journal of Applied
Research in Intellectual Disabilities. 2020;33(6):1141–50.
34. Kruithof K, Hoogsteyns M, Zaal-Schuller I, Huisman S, Willems D, Nieuwenhuijse A. Parents’
tacit knowledge of their child with profound intellectual and multiple disabilities: A qualitative
study. Journal of Intellectual & Developmental Disability. 2024;49(4):415–24.
35. Zaal-Schuller IH, Kruithof K, Hoogsteyns M, Nieuwenhuijse A, Willems D, Huisman S. Tacit
knowledge in medical consultations for patients with profound intellectual and multiple
disabilities: An exploratory qualitative study. Journal of Intellectual & Developmental Disability.
2025;50(1):106–15.
36. Differences between PROMIS Measures [Available from: https://www.healthmeasures.
net/explore-measurement-systems/promis/intro-to-promis/differences-between-promis-
measures.
37. EMA. Patient experience data in medicines development and regulatory decision-making.
https://www.ema.europa.eu/en/events/multi-stakeholder-workshop-patient-experience-data-
medicines-development-regulatory-decision-making#documents-section2022.
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