[1] 沈晓明. 儿科学[M]. 北京:人民卫生出版社, 2008. [2] Liu Y, Chen S, Zühlke L, et al.Global birth prevalence of congenital heart defects 1970-2017: updated systematic review and meta-analysis of 260 studies[J]. Int J Epidemiol,2019,48(2):455-463. DOI:10.1093/ije/dyz009. [3] Zhao Q M, Liu F, Wu L, et al.Prevalence of congenital heart disease at live birth in China[J]. J Pediatr,2019(204):53-58.DOI:10.1016/j.jpeds.2018.08.040. [4] Mandalenakis Z, Giang KW, Eriksson P, et al.Survival in children with congenital heart disease: have we reached a peak at 97%?[J]. J Am Heart Assoc,2020,9(22): e017704.DOI:10.1161/JAHA.120.017704. [5] Ladak LA, Hasan BS, Gullick J, et al.Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and Meta-analysis[J]. Arch Dis Child,2019,104(4):340-347. DOI:10.1136/archdischild-2017-313653. [6] U.S.Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance[J]. Health Qual Life Outcomes,2006(4):79.DOI:10.1186/1477-7525-4-79. [7] 成磊, 张雯, 黄青梅, 等. 患者自我报告结局在癌症患儿照护领域的应用研究进展[J]. 中华护理杂志, 2020,55(8): 1174-1178. DOI:10.3761/j.issn.0254-1769.2020.08.010. [8] Masterson Creber R, Spadaccio C, Dimagli A, et al.Patient-reported outcomes in cardiovascular trials[J]. Can J Cardiol,2021,37(9):1340-1352.DOI:10.1016/j.cjca.2021.04.006. [9] Anker SD, Agewall S, Borggrefe M, et al.The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials[J]. Eur Heart J,2014,35(30):2001-2009.DOI:10.1093/eurheartj/ehu205. [10] Lockwood C, Dos Santos KB, Pap R.Practical guidance for knowledge synthesis: scoping review methods[J]. Asian Nurs Res,2019, 13(5):287-294.DOI:10.1016/j.anr.2019.11.002. [11] Kamdem F, Meyanga Ngoah J, Nganou Gnindjio CN, et al.Pattern and determinants of health-related quality of life of adolescents with congenital heart disease in Cameroon: a single-center cross-sectional study[J]. JRSM Cardiovasc Dis,2024(13):20480040241247396.DOI:10.1177/20480040241247396. [12] Curran T, Losi R, Pymm J, et al.Positive mindset and exercise capacity in school-aged children and adolescents with congenital heart disease[J]. Front Pediatr, 2023(11): 1133255.DOI:10.3389/fped.2023.1133255. [13] Abassi H, Huguet H, Picot MC, et al.Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study[J]. Health Qual Life Outcomes,2020,18(1):366.DOI:10.1186/s12955-020-01615-6. [14] Ladak LA, Hasan BS, Gullick J, et al.Health-related quality of life in surgical children and adolescents with congenital heart disease compared with their age-matched healthy sibling: a cross-sectional study from a lower middle-income country, Pakistan[J]. Arch Dis Child,2019,104(5):419-425.DOI:10.1136/archdischild-2018-315594. [15] Reiner B, Oberhoffer R, Ewert P, et al.Quality of life in young people with congenital heart disease is better than expected[J]. Arch Dis Child,2019,104(2):124-128.DOI:10.1136/archdischild-2017-314211. [16] So SCY, Li WHC, Ho KY.The impact of congenital heart disease on the psychological well-being and quality of life of Hong Kong Chinese adolescents:a cross-sectional study[J]. J Clin Nurs,2019,28(17-18):3158-3167.DOI:10.1111/jocn.14864. [17] Acuña Mora M, Sparud-Lundin C, Burström Å, et al.Patient empowerment and its correlates in young persons with congenital heart disease[J]. Eur J Cardiovasc Nurs,2019,18(5):389-398.DOI:10.1177/1474515119835434. [18] Raj M, Sudhakar A, Roy R, et al.Health-related quality of life in infants and toddlers with congenital heart disease: a cross-sectional survey from South India[J].Arch Dis Child,2018,103(2):170-175.DOI:10.1136/archdischild-2017-313165. [19] Ernst MM, Marino BS, Cassedy A, et al.Biopsychosocial predictors of quality of life outcomes in pediatric congenital heart disease[J]. Pediatr Cardiol,2018,39(1):79-88.DOI:10.1007/s00246-017-1730-6. [20] Holland JE, Cassidy AR, Stopp C, et al.Psychiatric disorders and function in adolescents with tetralogy of fallot[J]. J Pediatr,2017(187):165-173.DOI:10.1016/j.jpeds.2017.04.048. [21] Sanz JH, Berl MM, Armour AC, et al.Prevalence and pattern of executive dysfunction in school age children with congenital heart disease[J]. Congenit Heart Dis,2017,12(2):202-209.DOI:10.1111/chd.12427. [22] Amedro P, Dorka R, Moniotte S, et al.Quality of life of children with congenital heart diseases: a multicenter controlled cross-sectional study[J]. Pediatr Cardiol,2015,36(8):1588-1601.DOI:10.1007/s00246-015-1201-x. [23] Neal AE, Stopp C, Wypij D, et al.Predictors of health-related quality of life in adolescents with tetralogy of Fallot[J]. J Pediatr, 2015, 166(1):132-138.DOI:10.1016/j.jpeds.2014.09.034. [24] Mellion K, Uzark K, Cassedy A, et al. Health-related quality of life outcomes in children and adolescents with congenital heart disease[J]. J Pediatr,2014,164(4):781-788.e1.DOI:10.1016/j.jpeds.2013.11.066. [25] Schaefer C, von Rhein M, Knirsch W, et al. Neurodevelopmental outcome, psychological adjustment, and quality of life in adolescents with congenital heart disease[J].Dev Med Child Neurol, 2013, 55(12):1143-1149.DOI:10.1111/dmcn.12242. [26] Kwon EN, Mussatto K, Simpson PM, et al.Children and adolescents with repaired tetralogy of fallot report quality of life similar to healthy peers[J]. Congenit Heart Dis,2011,6(1):18-27.DOI:10.1111/j.1747-0803.2010.00481.x. [27] Spijkerboer AW, Utens EM, Bogers AJ, et al.Long-term behavioural and emotional problems in four cardiac diagnostic groups of children and adolescents after invasive treatment for congenital heart disease[J]. Int J Cardiol,2008,125(1):66-73.DOI:10.1016/j.ijcard.2007.02.025. [28] Miatton M, De Wolf D, François K, et al.Behavior and self-perception in children with a surgically corrected congenital heart disease[J]. J Dev Behav Pediatr,2007,28(4):294-301.DOI:10.1097/DBP.0b013e3180cabc3c. [29] McCrindle BW, Williams RV, Mital S, et al. Physical activity levels in children and adolescents are reduced after the Fontan procedure, independent of exercise capacity, and are associated with lower perceived general health[J]. Arch Dis Child,2007, 92(6):509-514. DOI:10.1136/adc.2006.105239. [30] Spijkerboer AW, Utens EM, De Koning WB, et al.Health-related quality of life in children and adolescents after invasive treatment for congenital heart disease[J].Qual Life Res,2006,15(4):663-673.DOI:10.1007/s11136-005-3692-z. [31] Salzer-Muhar U, Herle M, Floquet P, et al.Self-concept in male and female adolescents with congenital heart disease[J]. Clinical Pediatrics,2002,41(1):17-24.DOI:10.1177/000992280204100105. [32] Utens EM, Verhulst FC, Duivenvoorden HJ, et al.Prediction of behavioural and emotional problems in children and adolescents with operated congenital heart disease[J]. Eur Heart J,1998,19(5):801-807.DOI:10.1053/euhj.1997.0855. [33] Knowles RL, Day T, Wade A, et al.Patient-reported quality of life outcomes for children with serious congenital heart defects[J]. Arch Dis Child,2014, 99(5):413-419.DOI:10.1136/archdischild-2013-305130. [34] Landolt MA, Valsangiacomo Buechel ER, Latal B.Health-related quality of life in children and adolescents after open-heart surgery[J]. J Pediatr, 2008,152(3):349-355.DOI:10.1016/j.jpeds.2007.07.010. [35] Hövels-Gürich HH, Konrad K, Wiesner M, et al.Long term behavioural outcome after neonatal arterial switch operation for transposition of the great arteries[J]. Arch Dis Child,2002,87(6):506-510.DOI:10.1136/adc.87.6.506. [36] Utens EM, Verhulst FC, Meijboom FJ, et al.Behavioural and emotional problems in children and adolescents with congenital heart disease[J]. Psychol Med,1993,23(2):415-424.DOI:10.1017/s0033291700028518. [37] Hövels-Gürich HH, Konrad K, Skorzenski D, et al.Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect[J]. Pediatr Cardiol,2007,28(5):346-354.DOI:10.1007/s00246-006-0123-z. [38] Robson VK, Stopp C, Wypij D, et al. Longitudinal associations between neurodevelopment and psychosocial health status in patients with repaired D-transposition of the great arteries[J]. J Pediatr,2019(204):38-45;e1.DOI:10.1016/j.jpeds.2018.08.069. [39] DeMaso DR, Labella M, Taylor GA, et al. Psychiatric disorders and function in adolescents with d-transposition of the great arteries[J]. J Pediatr,2014,165(4):760-766.DOI:10.1016/j.jpeds.2014.06.029. [40] Bratt EL, Mora MA, Sparud-Lundin C, et al.Effectiveness of the STEPSTONES transition program for adolescents with congenital heart disease-a randomized controlled trial[J]. J Adolesc Health,2023,73(4):655-663.DOI:10.1016/j.jadohealth.2023.02.019. [41] Meyer M, Brudy L, Fuertes-Moure A, et al.E-health exercise intervention for pediatric patients with congenital heart disease: a randomized controlled trial[J]. J Pediatr,2021(233):163-168.DOI:10.1016/j.jpeds.2021.01.058. [42] Calderon J, Wypij D, Rofeberg V, et al. Randomized controlled trial of working memory intervention in congenital heart disease[J]. J Pediatr,2020(227):191-198.e3.DOI:10.1016/j.jpeds.2020.08.038. [43] Mackie AS, Rempel GR, Kovacs AH, et al.Transition intervention for adolescents with congenital heart disease[J]. J Am Coll Cardiol, 2018, 71(16):1768-1777.DOI:10.1016/j.jacc.2018.02.043. [44] Marino BS, Tomlinson RS, Wernovsky G, et al.Validation of the pediatric cardiac quality of life inventory[J]. Ediatrics,2010,126(3):498-508.DOI:10.1542/peds.2009-2973. [45] 黄卓燕,郝元涛,朱琦,等.儿童生存质量测定量表PedsQL3.0心脏病模块中文版的信度和效度分析[J]. 中国组织工程研究与临床康复, 2010,14(48): 9037-9040.DOI:10.3969/j.issn.1673-8225.2010.48.026. [46] 贾冠华, 桑文凤, 张全英, 等. 先天性心脏病患者成年后真实体验质性研究的Meta整合[J]. 护理学报, 2022,29(10): 60-66. DOI:10.16460/j.issn1008-9969.2022.10.060. [47] 刘钟泠, 刘铎, 万勤, 等. 先天性心脏病患儿的神经认知发育结局[J]. 中华行为医学与脑科学杂志, 2023,32(12): 1142-1147.DOI:10.3760/cma.j.cn371468-20230201-00044. [48] Harrison CJ, Geerards D, Ottenhof MJ, et al.Computerised adaptive testing accurately predicts CLEFT-Q scores by selecting fewer, more patient-focused questions[J]. J Plast Reconstr Aesthet Surg, 2019,72(11):1819-1824.DOI:10.1016/j.bjps.2019.05.039. [49] 张雯, 黄青梅, 黄跃师, 等. 患者报告结局测量信息系统电子化数据收集工具的研究与发展现状[J]. 护士进修杂志, 2021,36(4):289-293.DOI:10.16821/j.cnki.hsjx.2021.25.007.
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