Page 130 - Let them speak Towards a patient reported outcome measure set for
P. 130

Chapter 5
43. Valderas JM, Alonso J. Patient reported outcome measures: a model-based classification
system for research and clinical practice. QualLife Res. 2008;17(9):1125-35.
44. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual
model of patient outcomes. JAMA. 1995;273.
45. Ustun TB, Chatterji S, Bickenbach J, Kostanjsek N, Schneider M. The international classification
of functioning, disability and health: A new tool for understanding disability and health.
Disability and rehabilitation. 2003;25.
46. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al. The Patient-Reported Outcomes
Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group
during its first two years. Medical Care. 2007;45(5 Suppl 1):S3-s11.
47. Oude Voshaar M, Terwee CB, Haverman L, van der Kolk B, Harkes M, van Woerden CS, et al.
Development of a standard set of PROs and generic PROMs for Dutch medical specialist care:
Recommendations from the Outcome-Based Healthcare Program Working Group Generic
PROMs. Quality of Life Research. 2023:1-11.
48. Consortium. PbTUoSQoLOftP-T. The PROTEUS-Trials Consortium (Patient-Reported
Outcomes Tools: Engaging Users & Stakeholders). PROTEUS Handbook. Available at: www.
TheProteusConsortium.org. [
49. Tsai J-H, Scheimann AO, McCandless SE, Strong TV, Bridges JF. Caregiver priorities for
endpoints to evaluate treatments for Prader-Willi syndrome: a best–worst scaling. Journal of
medical economics. 2018;21(12):1230-7.
50. Rietman AB, van Helden H, Both PH, Taal W, Legerstee JS, van Staa A, et al. Worries and needs
of adults and parents of adults with neurofibromatosis type 1. American Journal of Medical
Genetics Part A. 2018;176(5):1150-60.
51. Koslowski N, Klein K, Arnold K, Koesters M, Schuetzwohl M, Salize HJ, et al. Effectiveness
of interventions for adults with mild to moderate intellectual disabilities and mental
health problems: systematic review and meta-analysis. The British Journal of Psychiatry.
2016;209(6):469-74.
52. Balogh R, McMorris CA, Lunsky Y, Ouellette‐Kuntz H, Bourne L, Colantonio A, et al. Organising
healthcare services for persons with an intellectual disability. Cochrane Database of
Systematic Reviews. 2016(4).
53. 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.
54. Schützwohl M, Koch A, Koslowski N, Puschner B, Voß E, Salize HJ, et al. Mental illness, problem
behaviour, needs and service use in adults with intellectual disability. Social psychiatry and
psychiatric epidemiology. 2016;51:767-76.
55. Medina-Rico M, López-Ramos H, Quiñonez A. Sexuality in people with intellectual disability:
Review of literature. Sexuality and disability. 2018;36:231-48.
56. Adams D, Clarke S, Griffith G, Howlin P, Moss J, Petty J, et al. Mental health and well-being
in mothers of children with rare genetic syndromes showing chronic challenging behavior: a
cross-sectional and longitudinal study. American journal on intellectual and developmental
disabilities. 2018;123(3):241-53.
57. Fitzgerald J, Gallagher L. Parental stress and adjustment in the context of rare genetic
syndromes: A scoping review. Journal of Intellectual Disabilities. 2022;26(2):522-44.
58. Administration USFaD. Clinical Outcome Assessment (COA): Frequently Asked Questions
2020 [Available from: https://www.fda.gov/about-fda/clinical-outcome-assessment-coa-
frequently-asked-questions#COADefinition.
59. Law E, Fisher E, Eccleston C, Palermo TM. Psychological interventions for parents of children
and adolescents with chronic illness. Cochrane Database of Systematic Reviews. 2019(3).
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. Bull C, Byrnes J, Hettiarachchi R, Downes M. A systematic review of the validity and reliability
of patient‐reported experience measures. Health services research. 2019;54(5):1023-35.
62. Prinsen CA, Terwee CB. Measuring positive health: for now, a bridge too far. Public Health.
2019;170:70-7.
63. Downs J, Wong K, Drummond C, Leonard H. Longitudinal evaluation of the stability of hand
function in Rett syndrome. The Journal of Pediatrics. 2021;237:244-9. e3.
128







































   128   129   130   131   132