Page 167 - Demo
P. 167
Development and validation of the TSC-PROM165663. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1). 64. LimeSurvey [Internet]. [cited 2023 May 17]. Available from: https://www.limesurvey.org/.65. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010. 66. 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. 67. 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). 68. 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. 69. 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). 70. 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). 71. Cheah PS, Prabhakar S, Yellen D, Beauchamp RL, Zhang X, Kasamatsu S, et al. Gene therapy for tuberous sclerosis complex type 2 in a mouse model by delivery of AAV9 encoding a condensed form of tuberin. Sci Adv. 2021;7(2). 72. Heunis TM, Bissell S, Byars AW, Capal JK, Chambers N, Cukier S, et al. Empowering Families Through Technology: A Mobile-Health Project to Reduce the TAND Identification and Treatment Gap (TANDem). Front Psychiatry. 2022;13. 73. 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). 74. Heaney A, Wilburn J, Rouse M, Langmead S, Blakeley JO, Huson S, et al. The development of the PlexiQoL: A patient-reported outcome measure for adults with neurofibromatosis type 1-associated plexiform neurofibromas. Mol Genet Genomic Med. 2020;8(12). 75. Patterson MC, Lloyd-Price L, Guldberg C, Doll H, Burbridge C, Chladek M, et al. Validation of the 5-domain Niemann-Pick type C Clinical Severity Scale. Orphanet J Rare Dis. 2021;16(1). 76. Kolevzon A, Ventola P, Keary CJ, Heimer G, Neul JL, Adera M, et al. Development of an adapted Clinical Global Impression scale for use in Angelman syndrome. J Neurodev Disord. 2021;13(1). 77. Fries JF, Witter J, Rose M, Cella D, Khanna D, Morgan-DeWitt E. Item response theory, computerized adaptive testing, and promis: Assessment of physical function. J Rheumatol. 2014;41(1). Annelieke Muller sHL.indd 165 14-11-2023 09:07