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Development and validation of the TSC-PROM163620. Thompson JJ, Kelly KL, Ritenbaugh C, Hopkins AL, Sims CM, Coons SJ. Developing a patientcentered outcome measure for complementary and alternative medicine therapies II: Refining content validity through cognitive interviews. BMC Complement Altern Med. 2011;11. 21. Gibbons C, Porter I, Gonçalves-Bradley DC, Stoilov S, Ricci-Cabello I, Tsangaris E, et al. Routine provision of feedback from patient-reported outcome measurements to healthcare providers and patients in clinical practice. Vol. 2021, Cochrane Database of Systematic Reviews. 2021. 22. Mercieca-Bebber R, King MT, Calvert MJ, Stockler MR, Friedlander M. The importance of patient-reported outcomes in clinical trials and strategies for future optimization. Patient Relat Outcome Meas. 2018. 23. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations. Med Care. 2001;39(8). 24. Ware JE. SF-36 Health Survey update. Vol. 25, Spine. 2000. 25. Bijkerk CJ, De Wit NJ, Muris JWM, Jones RH, Knottnerus JA, Hoes AW. Outcome measures in irritable bowel syndrome: Comparison of psychometric and methodological characteristics. Am J Gastroenterol. 2003;98(1). 26. Lee EH, Kwon O, Hahm KB, Kim WH, Kim J Il, Cheung DY, et al. Irritable bowel syndromespecific health-related quality of life instrument: Development and psychometric evaluation. Health Qual Life Outcomes. 2016;14(1). 27. Zöllner JP, Conradi N, Sauter M, Knuf M, Knake S, Kurlemann G, et al. Quality of life and its predictors in adults with tuberous sclerosis complex (TSC): a multicentre cohort study from Germany. Neurol Res Pract. 2021;3(1). 28. Zeltner NA, Baumgartner MR, Bondarenko A, Ensenauer R, Karall D, Kölker S, et al. Development and psychometric evaluation of the metabQoL 1.0: A quality of life questionnaire for paediatric patients with intoxication-type inborn errors of metabolism. In: JIMD Reports. 2017. 29. Srikrishna S, Robinson D, Cardozo L, Gonzalez J. Is there a discrepancy between patient and physician quality of life assessment? Neurourol Urodyn. 2009;28(3). 30. Aman MG, Singh NN, Stewart AW, Field CJ. Psychometric characteristics of the aberrant behavior checklist. Am J Ment Defic. 1985. 31. Hessl D, Sansone SM, Berry-Kravis E, Riley K, Widaman KF, Abbeduto L, et al. The NIH Toolbox Cognitive Battery for intellectual disabilities: Three preliminary studies and future directions. J Neurodev Disord. 2016;8(1). 32. Cruz Rivera S, McMullan C, Jones L, Kyte D, Slade A, Calvert M. The impact of patient-reported outcome data from clinical trials: perspectives from international stakeholders. J PatientReported Outcomes. 2020;4(1). 33. De Vet HCW, Terwee CB, Mokkink LB, Knol DL. Measurement in medicine: A practical guide. Measurement in Medicine: A Practical Guide. 2011. 34. Terwee CB, Prinsen CAC, Chiarotto A, Westerman MJ, Patrick DL, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Quality of Life Research. 2018. 35. Franz DN, Bissler JJ, McCormack FX. Tuberous sclerosis complex: Neurological, renal and pulmonary manifestations. Vol. 41, Neuropediatrics. 2010. 36. Hasbani DM, Crino PB. Tuberous sclerosis complex. In: Handbook of Clinical Neurology. 2018. 37. Kingswood C, Bolton P, Crawford P, Harland C, Johnson SR, Sampson JR, et al. The clinical profile of tuberous sclerosis complex (TSC) in the United Kingdom: A retrospective cohort study in the Clinical Practice Research Datalink (CPRD). Eur J Paediatr Neurol. 2016;20(2). 38. Leclezio L, Jansen A, Whittemore VH, De Vries PJ. Pilot validation of the tuberous sclerosisassociated neuropsychiatric disorders (TAND) checklist. Pediatr Neurol. 2015. 39. World Health Organization. Towards a Common Language for Functioning , Disability and Health ICF. International Classification. 2002. 40. Willis GB, Artino AR. What Do Our Respondents Think We’re Asking? Using Cognitive Interviewing to Improve Medical Education Surveys. J Grad Med Educ. 2013;5(3). 41. Collins D. Pretesting survey instruments: An overview of cognitive methods. In: Quality of Life Research. 2003. Annelieke Muller sHL.indd 163 14-11-2023 09:07