References: Evans DG, Howard E, Giblin C et al. Birth incidence and prevalence of tumor-prone syndromes: estimates from a UK family genetic register service. Am J Med Genet A 2010; 152A: 327-32.
Jett K, Friedman JM. Clinical and genetic aspects of neurofibromatosis 1. Genet Med 2010; 12: 1-11.
Vranceanu AM, Merker VL, Park E, Plotkin SR. Quality of life among adult patients with neurofibromatosis 1, neurofibromatosis 2 and schwannomatosis: a systematic review of the literature. J Neurooncol 2013; 114: 257-62.
Sanagoo A, Jouybari L, Koohi F, Sayehmiri F. Evaluation of QoL in neurofibromatosis patients: a systematic review and meta-analysis study. BMC Neurol 2019; 19: 123.
e-provide. Pediatric Quality of Life Inventory™ Neurofibromatosis Module (PedsQL™ Neurofibromatosis Module). Updated August 2018. Available at: https://eprovide.mapi-trust.org/instruments/pediatric-quality-of-life-inventory-neurofibromatosis-module (accessed 7 July 2021).
Ferner RE, Thomas M, Mercer G et al. Evaluation of quality of life in adults with neurofibromatosis 1 (NF1) using the impact of NF1 on quality of life (INF1-QOL) questionnaire. Health Qual Life Outcomes 2017; 15: 34.
WHOQOL. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Social Sci Med 1995; 41: 1403-9.
Ferner RE, Hughes RAC, Weinman J. Intellectual impairment in neurofibromatosis 1. J Neurolog Sci 1996; 138: 125-33.
Nutakki K, Hingtgen CM, Monahan P et al. Development of the adult PedsQLTM Neurofibromatosis Type 1 Module: initial feasibility, reliability and validity. Health Qual Life Outcomes 2013; 11: 21.
Evans DG. What is the malignancy risk in neurofibromatosis type 1? J Clin Oncol 2016; 34: 1967-9.
Chren MM, Lasek RJ, Quinn LM et al. Skindex, a quality-of-life measure for patients with skin disease: reliability, validity, and responsiveness. J Invest Dermatol 1996; 107: 707-13.
Ware JEKM, Bjorner JB, Turner-Bowker DMME et al. User's Manual for the SF-36v2 Health Survey, 2nd edn. Lincoln (RI): Quality Metric, 2007.
Crawford HA, Barton B, Wilson MJ et al. The impact of neurofibromatosis type 1 on the health and wellbeing of Australian adults. J Genet Couns 2015; 24: 931-44.
Radtke HB, Sebold CD, Allison C et al. Neurofibromatosis type 1 in genetic counseling practice: recommendations of the National Society of Genetic Counselors. J Genet Couns 2007; 16: 387-407.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77-101.
Kincaid JP, Fishburne RP Jr, Rogers RL, Chissom BS. Derivation Of New Readability Formulas (Automated Readability Index, Fog Count And Flesch Reading Ease Formula) For Navy Enlisted Personnel, 1975.
Kodra Y, Giustini S, Divona L et al. Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients. Dermatology 2009; 218: 215-20.
Page PZ, Page GP, Ecosse E et al. Impact of neurofibromatosis 1 on quality of life: a cross-sectional study of 176 American cases. Am J Med Genet 2006; 140A: 1893-8.
Wolkenstein P, Zeller J, Revuz J et al. Quality-of-life impairment in neurofibromatosis type 1: a cross-sectional study of 128 cases. Arch Dermatol 2001; 137: 1421-5.
Riccardi VM, Kleiner B. Neurofibromatosis: a neoplastic birth defect with two age peaks of severe problems. Birth Defects Orig Artic Ser 1977; 13: 131-8.
Koo TK, Li MY. A guideline of selecting and reporting intraclass correlation coefficients for reliability research. J Chiropr Med 2016; 15: 155-63.
de Winter JC, Dodou D, Wieringa PA. Exploratory factor analysis with small sample sizes. Multivariate Behav Res 2009; 44: 147-81.
Hair JF, Black WC, Babin BJ, Anderson RE. Multivariate Data Analysis: A Global Perspective, 10th edn. Hoboken, NJ: Pearson Prentice Hall, 2010.
Campbell DT, Fiske DW. Convergent and discriminant validation by the multitrait-multimethod matrix. Psychol Bull 1959; 56: 81-105.
Kuenstner S, Langelotz C, Budach V et al. The comparability of quality of life scores. A multitrait multimethod analysis of the EORTC QLQ-C30, SF-36 and FLIC questionnaires. Eur J Cancer 2002; 38: 339-48.
Gilpin AR. Table for conversion of Kendall's tau to Spearman's rho within the context of measures of magnitude of effect for meta-analysis. Educ Psychol Meas 1993; 53: 87-92.
Taber KS. The use of Cronbach’s alpha when developing and reporting research instruments in science education. Res Sci Educ 2018; 48: 1273-96.
Prinsen CA, Lindeboom R, De Korte J. Interpretation of Skindex-29 scores: cutoffs for mild, moderate, and severe impairment of health-related quality of life. J Invest Dermatol 2011; 131: 1945-7.
Fritz CO, Morris PE, Richler JJ. Effect size estimates: current use, calculations, and interpretation. J Exp Psychol Gen 2012; 141: 2-18 (erratum in J Exp Psychol Gen 2012; 141: 30).
Hersh L, Salzman B, Snyderman D. Health literacy in primary care practice. Am Fam Phys 2015; 92: 118-24.
Hummelvoll G, Antonsen KM. Young adults’ experience of living with neurofibromatosis type 1. J Genet Couns 2013; 22: 188-99.
Wilkins R, Laß I, Butterworth P, Esperanza V-T. The Household, Income and Labour Dynamics in Australia Survey: Selected Findings from Waves 1 to 17. 2019. Melbourne Institute: Applied Economic & Social Research, University of Melbourne. Available at: https://melbourneinstitute.unimelb.edu.au/__data/assets/pdf_file/0011/3127664/HILDA-Statistical-Report-2019.pdf (accessed 11 August 2021).
Hamoy-Jimenez G, Kim R, Suppiah S et al. Quality of life in patients with neurofibromatosis type 1 and 2 in Canada. Neurooncol Adv 2020; 2(Suppl): i141-9.
Buono FD, Sprong ME, Paul E et al. The mediating effects of quality of life, depression, and generalized anxiety on perceived barriers to employment success for people diagnosed with neurofibromatosis type 1. Orphanet J Rare Dis 2021; 16: 234.
Edwards PJ, Roberts I, Clarke MJ et al. Methods to increase response to postal and electronic questionnaires. Cochrane Database Syst Rev 2009; 8: MR000008.
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