Page 135 - Demo

Outcomes and outcome measurement instruments133542. Maguire S, Davison J, McLaughlin M, Simms V, Bunting B. Exploring the psychometric properties of self-report instruments used to measure health-related quality of life and subjective wellbeing of adolescents with intellectual disabilities: A Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) systematic review. J Appl Res Intellect Disabil [Internet]. 2023 Apr 26; Available from: http://www.ncbi.nlm.nih.gov/pubmed/37101341.43. Burks HB, Des Bordes JKA, Chadha R, Holmes HM, Rianon NJ. Quality of life assessment in older adults with dementia: A systematic review. Vol. 50, Dementia and Geriatric Cognitive Disorders. 2021. 44. Griffiths AW, Smith SJ, Martin A, Meads D, Kelley R, Surr CA. Exploring self-report and proxyreport quality-of-life measures for people living with dementia in care homes. Qual Life Res. 2020;29(2). 45. Alcantara J, Ohm J, Alcantara J. Comparison of pediatric self reports and parent proxy reports utilizing PROMIS: Results from a chiropractic practice-based research network. Complement Ther Clin Pract. 2017;29. 46. Janse AJ, Gemke RJBJ, Uiterwaal CSPM, Van Der Tweel I, Kimpen JLL, Sinnema G. Quality of life: Patients and doctors don’t always agree: A meta-analysis. J Clin Epidemiol. 2004;57(7). 47. Lunsky Y, Bramston P. A preliminary study of perceived stress in adults with intellectual disabilities according to self-report and informant ratings. J Intellect Dev Disabil. 2006;31(1). 48. Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2012;38(2). 49. Janssen CGC, Schuengel C, Stolk J. Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers. Vol. 14, Quality of Life Research. 2005. 50. Ediebah DE, Reijneveld JC, Taphoorn MJB, Coens C, Zikos E, Aaronson NK, et al. Impact of neurocognitive deficits on patient–proxy agreement regarding health-related quality of life in low-grade glioma patients. Qual Life Res. 2017;26(4). 51. Upton P, Lawford J, Eiser C. Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res. 2008;17:895–913. 52. Davison J, Maguire S, McLaughlin M, Simms V. Involving adolescents with intellectual disability in the adaptation of self-reported subjective well-being measures: participatory research and methodological considerations. J Intellect Disabil Res. 2022;66(7). 53. Ingerski LM, Modi AC, Hood KK, Pai AL, Zeller M, Piazza-Waggoner C, et al. Health-Related Quality of Life Across Pediatric Chronic Conditions. J Pediatr. 2010;156(4). 54. Kooijmans R, Mercera G, Langdon PE, Moonen X. The Adaptation of Self-Report Measures to the Needs of People With Intellectual Disabilities: A Systematic Review. Clin Psychol Sci Pract. 2022;29(3). 55. Kang S, Jones A, Shaffer RC, Erickson CA, Schmitt LM. Developing Improved Outcome Measures in FXS: Key Stakeholder Feedback. SSRN Electron J. 2023.56. Adang LA, Gavazzi F, Jawad AF, Cusack S V., Kopin K, Peer K, et al. Development of a neurologic severity scale for Aicardi Goutières Syndrome. Mol Genet Metab. 2020;130(2). 57. Müller AR, Luijten MAJ, Haverman L, De Ranitz-Greven WL, Janssens P, Rietman AB, et al. Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM. BMC Med. 2023;21(298). 58. Rode J. Rare diseases: understanding this public health priority. Paris: EURORDIS. 2005. 59. 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. Med Care. 2007;45(5 SUPPL. 1). 60. Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, et al. The patient-reported outcomes measurement information system (PROMIS) developed and tested its first wave of adult selfreported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11). 61. Nguyen TH, Han HR, Kim MT, Chan KS. An introduction to item response theory for patientreported outcome measurement. Vol. 7, Patient. 2014. Annelieke Muller sHL.indd 133 14-11-2023 09:07