References
1. Cunningham-Rundles C, Bodian C. Common variable immunodeficiency: clinical and immunological features of 248 patients. Clin Immunol . Jul 1999;92(1):34-48. doi:10.1006/clim.1999.4725
2. Bethune C, Egner W, Garcez T, et al. British Society for Immunology/United Kingdom Primary Immunodeficiency Network consensus statement on managing non-infectious complications of common variable immunodeficiency disorders. Clin Exp Immunol . Jun 2019;196(3):328-335. doi:10.1111/cei.13272
3. Gathmann B, Mahlaoui N, Ceredih, et al. Clinical picture and treatment of 2212 patients with common variable immunodeficiency.J Allergy Clin Immunol . Jul 2014;134(1):116-26. doi:10.1016/j.jaci.2013.12.1077
4. Abbott JK, Gelfand EW. Common Variable Immunodeficiency: Diagnosis, Management, and Treatment. Immunol Allergy Clin North Am . Nov 2015;35(4):637-58. doi:10.1016/j.iac.2015.07.009
5. Ballow M. Managing comorbid complications in patients with common variable immunodeficiency. Ann Allergy Asthma Immunol . Dec 2013;111(6 Suppl):S6-9. doi:10.1016/j.anai.2013.06.032
6. Basch E, Barbera L, Kerrigan CL, Velikova G. Implementation of Patient-Reported Outcomes in Routine Medical Care. Am Soc Clin Oncol Educ Book . May 23 2018;38:122-134. doi:10.1200/EDBK_200383
7. Higginson IJ, Carr AJ. Measuring quality of life: Using quality of life measures in the clinical setting. BMJ . May 26 2001;322(7297):1297-300. doi:10.1136/bmj.322.7297.1297
8. Bayrhuber M, Tinsel I, Goldacker S, et al. Perceived health of patients with common variable immunodeficiency - a cluster analysis.Clin Exp Immunol . Apr 2019;196(1):76-85. doi:10.1111/cei.13252
9. von der Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Mol Genet Genomic Med . Nov 2017;5(6):758-773. doi:10.1002/mgg3.315
10. Quinti I, Pulvirenti F, Giannantoni P, et al. Development and Initial Validation of a Questionnaire to Measure Health-Related Quality of Life of Adults with Common Variable Immune Deficiency: The CVID_QoL Questionnaire. J Allergy Clin Immunol Pract . Nov - Dec 2016;4(6):1169-1179 e4. doi:10.1016/j.jaip.2016.07.012
11. Testa MA, Simonson DC. Assessment of quality-of-life outcomes.N Engl J Med . Mar 28 1996;334(13):835-40. doi:10.1056/NEJM199603283341306
12. CDC. Health-Related Quality of Life (HRQOL). Accessed 9 Dec, 2020.https://www.cdc.gov/hrqol/concept.htm
13. Haraldstad K, Wahl A, Andenaes R, et al. A systematic review of quality of life research in medicine and health sciences. Qual Life Res . Oct 2019;28(10):2641-2650. doi:10.1007/s11136-019-02214-9
14. Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. Pharmacoeconomics . Jan 2000;17(1):13-35. doi:10.2165/00019053-200017010-00002
15. Wiering B, de Boer D, Delnoij D. Patient involvement in the development of patient-reported outcome measures: a scoping review.Health Expect . Feb 2017;20(1):11-23. doi:10.1111/hex.12442
16. Tcheurekdjian H, Palermo T, Hostoffer R. Quality of life in common variable immunodeficiency requiring intravenous immunoglobulin therapy.Ann Allergy Asthma Immunol . Aug 2004;93(2):160-5. doi:10.1016/S1081-1206(10)61469-X
17. Rider NL, Kutac C, Hajjar J, et al. Health-Related Quality of Life in Adult Patients with Common Variable Immunodeficiency Disorders and Impact of Treatment. J Clin Immunol . Jul 2017;37(5):461-475. doi:10.1007/s10875-017-0404-8
18. Tabolli S, Giannantoni P, Pulvirenti F, et al. Longitudinal study on health-related quality of life in a cohort of 96 patients with common variable immune deficiencies. Front Immunol . 2014;5:605. doi:10.3389/fimmu.2014.00605
19. Andersen JB, Midttun K, Feragen KJB. Measuring quality of life of primary antibody deficiency patients using a disease-specific health-related quality of life questionnaire for common variable immunodeficiency (CVID_QoL). J Patient Rep Outcomes . Feb 26 2019;3(1):15. doi:10.1186/s41687-019-0101-x
20. Pulvirenti F, Cinetto F, Milito C, et al. Health-Related Quality of Life in Common Variable Immunodeficiency Italian Patients Switched to Remote Assistance During the COVID-19 Pandemic. J Allergy Clin Immunol Pract . Jun 2020;8(6):1894-1899 e2. doi:10.1016/j.jaip.2020.04.003
21. Schmidt S, Bullinger M. Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil . Apr 2003;84(4 Suppl 2):S29-34. doi:10.1053/apmr.2003.50244
22. Wild D, Grove A, Martin M, et al. Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) Measures: report of the ISPOR Task Force for Translation and Cultural Adaptation. Value Health . Mar-Apr 2005;8(2):94-104. doi:10.1111/j.1524-4733.2005.04054.x
23. Seidel MG, Kindle G, Gathmann B, et al. The European Society for Immunodeficiencies (ESID) Registry Working Definitions for the Clinical Diagnosis of Inborn Errors of Immunity. J Allergy Clin Immunol Pract . Jul-Aug 2019;7(6):1763-1770. doi:10.1016/j.jaip.2019.02.004
24. Ware JE, Jr., Gandek B. Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) Project. J Clin Epidemiol . Nov 1998;51(11):903-12. doi:10.1016/s0895-4356(98)00081-x
25. Anthoine E, Moret L, Regnault A, Sebille V, Hardouin JB. Sample size used to validate a scale: a review of publications on newly-developed patient reported outcomes measures. Health Qual Life Outcomes . Dec 9 2014;12:176. doi:10.1186/s12955-014-0176-2
26. Asgardoon MH, Azizi G, Yazdani R, et al. Monogenic Primary Immunodeficiency Disorder Associated with Common Variable Immunodeficiency and Autoimmunity. Int Arch Allergy Immunol . 2020;181(9):706-714. doi:10.1159/000508817
27. Pikkarainen S, Martelius T, Ristimaki A, Siitonen S, Seppanen MRJ, Farkkila M. A High Prevalence of Gastrointestinal Manifestations in Common Variable Immunodeficiency. Am J Gastroenterol . Apr 2019;114(4):648-655. doi:10.14309/ajg.0000000000000140
28. Rizvi FS, Zainaldain H, Rafiemanesh H, et al. Autoimmunity in common variable immunodeficiency: a systematic review and meta-analysis.Expert Rev Clin Immunol . Dec 7 2020:1-9. doi:10.1080/1744666X.2021.1850272
29. Ballow M, Conaway MR, Sriaroon P, et al. Construction and validation of a novel disease-specific quality-of-life instrument for patients with primary antibody deficiency disease (PADQOL-16). J Allergy Clin Immunol . Jun 2017;139(6):2007-2010 e8. doi:10.1016/j.jaci.2016.11.029
30. Duckworth AL, Kern ML. A Meta-Analysis of the Convergent Validity of Self-Control Measures. J Res Pers . Jun 1 2011;45(3):259-268. doi:10.1016/j.jrp.2011.02.004
31. Demiral Y, Ergor G, Unal B, et al. Normative data and discriminative properties of short form 36 (SF-36) in Turkish urban population.BMC Public Health . Oct 9 2006;6:247. doi:10.1186/1471-2458-6-247
32. Pinar R. Reliability and construct validity of the SF-36 in Turkish cancer patients. Qual Life Res . Feb 2005;14(1):259-64. doi:10.1007/s11136-004-2393-3
33. Yong AG, Pearce S. A beginner’s guide to factor analysis: Focusing on exploratory factor analysis. Tutorials in quantitative methods for psychology . 2013;9(2):79-94.
34. Kline P. An easy guide to factor analysis . Routledge; 2014.
35. MacCallum RC, Widaman, K. F., Zhang, S., & Hong, S. Sample size in factor analysis. Psychological methods . 1999;4(1):84-99. doi:https://doi.org/10.1037/1082-989X.4.1.84