Page 231 - Let them speak Towards a patient reported outcome measure set for

General discussion
58. Kramer JM, Schwartz A. Reducing barriers to patient-reported outcome measures for
people with cognitive impairments. Archives of Physical Medicine and Rehabilitation.
2017;98(8):1705–15.
59. Kooijmans R, Langdon PE, Moonen X. Assisting children and youth with completing self-report
instruments introduces bias: A mixed-method study that includes children and young people’s
views. Methods in Psychology. 2022;7:100102.
60. Haverman L, van Oers HA, Limperg PF, Hijmans CT, Schepers SA, Sint Nicolaas SM, et al.
Implementation of electronic patient reported outcomes in pediatric daily clinical practice: The
KLIK experience. Clinical Practice in Pediatric Psychology. 2014;2(1):50–67.
61. Haverman L, van Rossum MAJ, van Veenendaal M, van den Berg JM, Dolman KM, Swart J,
et al. Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life.
Pediatrics. 2013;131(2):e533–e43.
62. Engelen V, Detmar S, Koopman H, Maurice-Stam H, Caron H, Hoogerbrugge P, et al. Reporting
health-related quality of life scores to physicians during routine follow-up visits of pediatric
oncology patients: Is it effective? Pediatric Blood & Cancer. 2011;58(5):766–74.
63. Teela L, van Muilekom MM, Kooij LH, Gathier AW, van Goudoever JB, Grootenhuis MA, et al.
Clinicians’ perspective on the implemented KLIK PROM portal in clinical practice. Quality of
Life Research. 2021;30(11):3267–77.
64. Stover AM, Haverman L, van Oers HA, Greenhalgh J, Potter CM. Using an implementation
science approach to implement and evaluate patient-reported outcome measures (PROM)
initiatives in routine care settings. Quality of Life Research. 2021;30(11):3015–33.
65. van Muilekom MM, Teela L, van Oers HA, van Goudoever JB, Grootenhuis MA, Haverman
L. Patients’ and parents’ perspective on the implementation of Patient Reported Outcome
Measures in pediatric clinical practice using the KLIK PROM portal. Quality of Life Research.
2022;31(1):241–54.
66. Groenewegen A, Biller OM, Greenhalgh J, Joseph A, Lindström Egholm C, Daams J, et al.
Patient Education on PROM completion in clinical care settings: a scoping review. In progress.
67. Nilsen P. Making sense of implementation theories, models and frameworks. Implementation
science : IS. 2015;10:53.
68. Barratt M, Lewis P, Duckworth N, Jojo N, Malecka V, Tomsone S, et al. Parental Experiences of
Quality of Life When Caring for Their Children With Intellectual Disability: A Meta‐Aggregation
Systematic Review. Journal of Applied Research in Intellectual Disabilities. 2025;38(1):e70005.
69. Kayadjanian N, Schwartz L, Farrar E, Comtois KA, Strong TV. High levels of caregiver burden in
Prader-Willi syndrome. PloS one. 2018;13(3):e0194655.
70. Chow K, Rezvan PH, Kazerooni L, Nguyen L, Boyd NK, Vogel BN, et al. Caregiver burden and
familial impact in Down Syndrome Regression Disorder. Orphanet Journal of Rare Diseases.
2025;20(1):126.
71. Forsythe E, Mallya UG, Yang M, Huber C, Cala ML, Greatsinger A, et al. Caregiver burden
in Bardet-Biedl syndrome: findings from the CARE-BBS study. Orphanet Journal of Rare
Diseases. 2023;18(1):181.
72. Walkowiak D, Domaradzki J. Caregiving burden and quality of life among parents of individuals
with Angelman syndrome: Gender differences and the impact of financial well-being. Pediatric
Neurology. 2025.
73. Dyke P, Mulroy S, Leonard H. Siblings of children with disabilities: Challenges and opportunities.
Acta paediatrica. 2009;98(1):23–4.
74. Marquis S, Hayes MV, McGrail K. Factors that may affect the health of siblings of children
who have an intellectual/developmental disability. Journal of Policy and Practice in Intellectual
Disabilities. 2019;16(4):273–86.
75. Veerman LK, Willemen AM, Derks SD, Brouwer-van Dijken AA, Sterkenburg PS. Supporting
young siblings of children with intellectual disabilities and/or visual impairments with
the serious game ‘Broodles’: A mixed methods randomized controlled trial. Research in
developmental disabilities. 2025;161:104996.
76. Serious game voor brussen [Available from: https://sites.google.com/vu.nl/
seriousgamevoorbrussen/homepage.
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