Page 201 - Let them speak Towards a patient reported outcome measure set for
P. 201
Evaluating the core PROM set
53. de Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in Medicine: A Practical Guide:
Cambridge University Press; 2011.
54. Schober P, Boer C, Schwarte LA. Correlation coefficients: appropriate use and interpretation.
Anesthesia & Analgesia. 2018;126(5):1763–8.
55. Harrison RA, Bradshaw J, Forrester‐Jones R, McCarthy M, Smith S. Social networks and people
with intellectual disabilities: A systematic review. Journal of Applied Research in Intellectual
Disabilities. 2021;34(4):973–92.
56. Davies L, Oliver C. The age related prevalence of aggression and self-injury in persons with an
intellectual disability: A review. Research in developmental disabilities. 2013;34(2):764–75.
57. Powis L, Oliver C. The prevalence of aggression in genetic syndromes: a review. Research in
developmental disabilities. 2014;35(5):1051–71.
58. Browne E, King J, Surtees A. Sleep in people with and without intellectual disabilities: a
systematic review and meta‐analysis. Journal of Intellectual Disability Research. 2024;68(1):1–
22.
59. Meaningful Change for PROMIS®: HealthMeasures; [Available from: https://www.
healthmeasures.net/score-and-interpret/interpret-scores/promis/meaningful-change.
60. Carle AC, Bevans KB, Tucker CA, Forrest CB. Using nationally representative percentiles to
interpret PROMIS pediatric measures. Quality of Life Research. 2021;30(4):997–1004.
61. HealthMeasures [Available from: https://www.healthmeasures.net/.
62. Terwee CB, Roorda LD. Country-specific reference values for PROMIS® pain, physical
function and participation measures compared to US reference values. Annals of medicine.
2023;55(1):1–11.
63. Elsman EB, Flens G, de Beurs E, Roorda LD, Terwee CB. Towards standardization of measuring
anxiety and depression: Differential item functioning for language and Dutch reference values
of PROMIS item banks. PLoS One. 2022;17(8):e0273287.
64. American Psychiatric Association D, Association AP. Diagnostic and statistical manual of
mental disorders: DSM-5: American psychiatric association Washington, DC; 2013.
65. [Available from: www.healthmeaures.net.
66. Korteling DL, Ketelaar M, Limmen S, Terwee CB, Bloemen MA, Rameckers EA, et al. Psychometric
properties and reference values of the Patient-Reported Outcomes Measurement Information
System (PROMIS®) pediatric item banks Mobility, Upper Extremity and Pain Interference in
the Dutch population. Journal of Clinical Epidemiology. 2025:111855.
67. Ardalan K, Marques MC, Cella D, Curran ML, Gray EL, Lee J, et al., editors. Psychometric
properties of patient-reported outcomes measurement information system (PROMIS) fixed
short forms in Juvenile Myositis. Seminars in Arthritis and Rheumatism; 2025: Elsevier.
68. Khanna D, Maranian P, Rothrock N, Cella D, Gershon R, Khanna PP, et al. Feasibility and
construct validity of PROMIS and “legacy” instruments in an academic scleroderma clinic.
Value in Health. 2012;15(1):128–34.
69. Mazza MG, Rossetti A, Crespi G, Clerici M. Prevalence of co‐occurring psychiatric disorders
in adults and adolescents with intellectual disability: A systematic review and meta‐analysis.
Journal of Applied Research in Intellectual Disabilities. 2020;33(2):126–38.
70. Einfeld SL, Ellis LA, Emerson E. Comorbidity of intellectual disability and mental disorder in
children and adolescents: A systematic review. Journal of Intellectual and Developmental
Disability. 2011;36(2):137–43.
71. Cooper S-A, McLean G, Guthrie B, McConnachie A, Mercer S, Sullivan F, et al. Multiple physical
and mental health comorbidity in adults with intellectual disabilities: population-based cross-
sectional analysis. BMC family practice. 2015;16(1):110.
72. Hinckson EA, Curtis A. Measuring physical activity in children and youth living with intellectual
disabilities: a systematic review. Research in developmental disabilities. 2013;34(1):72–86.
73. 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.
74. FDA. FDA Patient-Focused Drug Development Guidance Series for Enhancing the Incorporation
of the Patient’s Voice in Medical Product Development and Regulatory Decision Making.
7
199

