{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T19:01:47Z","timestamp":1760122907183,"version":"3.37.3"},"reference-count":65,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2019,11,18]],"date-time":"2019-11-18T00:00:00Z","timestamp":1574035200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2019,11,18]],"date-time":"2019-11-18T00:00:00Z","timestamp":1574035200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100010342","name":"Gillbergska stiftelsen","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010342","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100009757","name":"H.K.H. Kronprinsessan Lovisas F\u00f6rening f\u00f6r Barnasjukv\u00e5rd","doi-asserted-by":"publisher","award":["2018-00438","2016-00250"],"award-info":[{"award-number":["2018-00438","2016-00250"]}],"id":[{"id":"10.13039\/501100009757","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003186","name":"Fredrik och Ingrid Thurings Stiftelse","doi-asserted-by":"publisher","award":["2017-00320"],"award-info":[{"award-number":["2017-00320"]}],"id":[{"id":"10.13039\/501100003186","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2020,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Patients aged 8\u201317\u00a0years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015\u20132019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives,<jats:italic>t<\/jats:italic>tests and multivariable analysis. Results were compared with norm groups and reference samples.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was<jats:italic>M<\/jats:italic>\u2009=\u200980.4, comparable to children with asthma (<jats:italic>M<\/jats:italic>\u2009=\u200980.2) and diabetes (<jats:italic>M<\/jats:italic>\u2009=\u200979.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children\u2019s HRQoL and psychological well-being were identified. The parents\u2019 self-reports of anxiety and depression were comparable to non-clinical samples.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.<\/jats:p><\/jats:sec>","DOI":"10.1007\/s11136-019-02364-w","type":"journal-article","created":{"date-parts":[[2019,11,18]],"date-time":"2019-11-18T09:02:13Z","timestamp":1574067733000},"page":"913-924","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents"],"prefix":"10.1007","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9788-6159","authenticated-orcid":false,"given":"A-M.","family":"Kassa","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M.","family":"Dellenmark-Blom","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J.","family":"Thorsell Cederberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"G.","family":"Engvall","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H.","family":"Engstrand Lilja","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2019,11,18]]},"reference":[{"key":"2364_CR1","doi-asserted-by":"publisher","DOI":"10.1186\/1750-1172-6-56","author":"BD Solomon","year":"2011","unstructured":"Solomon, B. D. (2011). VACTERL\/VATER Association. Orphanet Journal of Rare Diseases. https:\/\/doi.org\/10.1186\/1750-1172-6-56.","journal-title":"Orphanet Journal of Rare Diseases"},{"key":"2364_CR2","unstructured":"Orphanet. (2019). Prevalence of rare diseases: Bibliographic data. Orphanet. Retrieved May 15, 2019, from http:\/\/www.orpha.net\/orphacom\/cahiers\/docs\/GB\/Prevalence_of_rare_diseases_by_alphabetical_list.pdf."},{"issue":"1","key":"2364_CR3","doi-asserted-by":"crossref","first-page":"34","DOI":"10.1016\/j.ejmg.2010.09.007","volume":"54","author":"MS Raam","year":"2011","unstructured":"Raam, M. S., Pineda-Alvarez, D. E., Hadley, D. W., & Solomon, B. D. (2011). Long-term outcomes of adults with features of VACTERL association. European Journal of Medical Genetics,54(1), 34\u201341.","journal-title":"European Journal of Medical Genetics"},{"issue":"3","key":"2364_CR4","doi-asserted-by":"crossref","first-page":"212","DOI":"10.1002\/ajmg.a.30938","volume":"138a","author":"PG Wheeler","year":"2005","unstructured":"Wheeler, P. G., & Weaver, D. D. (2005). Adults with VATER association: Long-term prognosis. American Journal of Medical Genetics Part A,138a(3), 212\u2013217.","journal-title":"American Journal of Medical Genetics Part A"},{"issue":"4","key":"2364_CR5","doi-asserted-by":"crossref","first-page":"376","DOI":"10.1093\/jpepsy\/jsr106","volume":"37","author":"M Pinquart","year":"2012","unstructured":"Pinquart, M., & Teubert, D. (2012). Academic, physical, and social functioning of children and adolescents with chronic physical illness: A meta-analysis. Journal of Pediatric Psychology,37(4), 376\u2013389.","journal-title":"Journal of Pediatric Psychology"},{"issue":"9","key":"2364_CR6","doi-asserted-by":"crossref","first-page":"1003","DOI":"10.1093\/jpepsy\/jsr042","volume":"36","author":"M Pinquart","year":"2011","unstructured":"Pinquart, M., & Shen, Y. (2011). Behavior problems in children and adolescents with chronic physical illness: A meta-analysis. Journal of Pediatric Psychology,36(9), 1003\u20131016.","journal-title":"Journal of Pediatric Psychology"},{"issue":"10","key":"2364_CR7","doi-asserted-by":"crossref","first-page":"1694","DOI":"10.1111\/apa.13973","volume":"106","author":"AM Kassa","year":"2017","unstructured":"Kassa, A-M., Engvall, G., & Engstrand Lilja, H. (2017). Young children with severe congenital malformations (VACTERL) expressed mixed feelings about their condition and worries about needles and anaesthesia. Acta Paediatrica,106(10), 1694\u20131701.","journal-title":"Acta Paediatrica"},{"key":"2364_CR8","doi-asserted-by":"publisher","DOI":"10.1111\/apa.14566","author":"AM Kassa","year":"2018","unstructured":"Kassa, A-M., Dahl, M., Strinnholm, M., & Engstrand Lilja, H. (2018). Attention difficulties and physical dysfunction common in children with complex congenital malformations: A study of preschool children with VACTERL association. Acta Paediatrica. https:\/\/doi.org\/10.1111\/apa.14566.","journal-title":"Acta Paediatrics"},{"issue":"4","key":"2364_CR9","doi-asserted-by":"crossref","first-page":"859","DOI":"10.1016\/S0031-3955(03)00072-5","volume":"50","author":"LA LeBlanc","year":"2003","unstructured":"LeBlanc, L. A., Goldsmith, T., & Patel, D. R. (2003). Behavioral aspects of chronic illness in children and adolescents. Pediatric Clinics of North America,50(4), 859\u2013878.","journal-title":"Pediatric Clinics of North America"},{"key":"2364_CR10","volume-title":"The DISABKIDS Questionnaires. Quality of life questionnaires for children with chronic conditions","author":"The DISABKIDS Group Europe","year":"2011","unstructured":"The DISABKIDS Group Europe. (2011). The DISABKIDS Questionnaires. Quality of life questionnaires for children with chronic conditions. Lengerich: Pabst Science Publishers."},{"issue":"10","key":"2364_CR11","doi-asserted-by":"crossref","first-page":"2433","DOI":"10.1007\/s11136-015-0975-x","volume":"24","author":"M Dellenmark-Blom","year":"2015","unstructured":"Dellenmark-Blom, M., Chaplin, J. E., Gatzinsky, V., J\u00f6nsson, L., & Abrahamson, K. (2015). Health-related quality of life among children, young people and adults with esophageal atresia: A review of the literature and recommendations for future research. Quality of Life Research,24(10), 2433\u20132445.","journal-title":"Quality of Life Research"},{"issue":"5","key":"2364_CR12","doi-asserted-by":"crossref","first-page":"286","DOI":"10.1053\/j.sempedsurg.2017.09.009","volume":"26","author":"TH Diseth","year":"2017","unstructured":"Diseth, T. H., & Emblem, R. (2017). Long-term psychosocial consequences of surgical congenital malformations. Seminars in Pediatric Surgery,26(5), 286\u2013294.","journal-title":"Seminars in Pediatric Surgery"},{"issue":"4","key":"2364_CR13","doi-asserted-by":"crossref","first-page":"398","DOI":"10.1136\/adc.2007.118133","volume":"96","author":"EE Hartman","year":"2011","unstructured":"Hartman, E. E., Oort, F. J., Aronson, D. C., & Sprangers, M. A. (2011). Quality of life and disease-specific functioning of patients with anorectal malformations or Hirschsprung\u2019s disease: A review. Archives of Disease in Childhood,96(4), 398\u2013406.","journal-title":"Archives of Disease in Childhood"},{"issue":"6","key":"2364_CR14","doi-asserted-by":"crossref","first-page":"1027","DOI":"10.1017\/S1047951115000086","volume":"25","author":"M Drakouli","year":"2015","unstructured":"Drakouli, M., Petsios, K., Giannakopoulou, M., Patiraki, E., Voutoufianaki, I., & Matziou, V. (2015). Determinants of quality of life in children and adolescents with CHD: A systematic review. Cardiology in the Young,25(6), 1027\u20131036.","journal-title":"Cardiology in the Young"},{"issue":"4","key":"2364_CR15","doi-asserted-by":"crossref","first-page":"463","DOI":"10.1097\/MPG.0b013e31815ce545","volume":"47","author":"EE Hartman","year":"2008","unstructured":"Hartman, E. E., Oort, F. J., Sprangers, M. A., Hanneman, M. J., van Heurn, L. W., de Langen, Z. J., et al. (2008). Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease. Journal of Pediatric Gastroenterology and Nutrition,47(4), 463\u2013471.","journal-title":"Journal of Pediatric Gastroenterology and Nutrition"},{"issue":"3","key":"2364_CR16","doi-asserted-by":"crossref","first-page":"177","DOI":"10.1007\/s12098-016-2269-x","volume":"84","author":"VS Raman","year":"2017","unstructured":"Raman, V. S., Agarwala, S., & Bhatnagar, V. (2017). Correlation between Quality of Life and Functional Outcomes in Operated Children with Anorectal Malformations Using the Krickenbeck Consensus. Indian Journal of Pediatrics,84(3), 177\u2013182.","journal-title":"Indian Journal of Pediatrics"},{"issue":"2","key":"2364_CR17","doi-asserted-by":"crossref","first-page":"333","DOI":"10.1017\/S1047951116000585","volume":"27","author":"B Svensson","year":"2017","unstructured":"Svensson, B., Idvall, E., Nilsson, F., & Liuba, P. (2017). Health-related quality of life in children with surgery for CHD: A study from the Swedish National Registry for Congenital Heart Disease. Cardiology in the Young,27(2), 333\u2013343.","journal-title":"Cardiology in the Young"},{"issue":"2","key":"2364_CR18","doi-asserted-by":"crossref","first-page":"318","DOI":"10.1016\/j.jpedsurg.2005.11.006","volume":"41","author":"A Goyal","year":"2006","unstructured":"Goyal, A., Williams, J. M., Kenny, S. E., Lwin, R., Baillie, C. T., Lamont, G. L., et al. (2006). Functional outcome and quality of life in anorectal malformations. Journal of Pediatric Surgery,41(2), 318\u2013322.","journal-title":"Journal of Pediatric Surgery"},{"issue":"5","key":"2364_CR19","doi-asserted-by":"crossref","first-page":"583","DOI":"10.1007\/s00383-018-04431-8","volume":"35","author":"H Wigander","year":"2019","unstructured":"Wigander, H., Nisell, M., Frenckner, B., Wester, T., Brodin, U., & \u00d6jmyr-Joelsson, M. (2019). Quality of life and functional outcome in Swedish children with low anorectal malformations: A follow-up study. Pediatric Surgery International,35(5), 583\u2013590.","journal-title":"Pediatric Surgery International"},{"key":"2364_CR20","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2012-001138","author":"IR Freitas","year":"2013","unstructured":"Freitas, I. R., Castro, M., Sarmento, S. L., Moura, C., Viana, V., Areias, J. C., et al. (2013). A cohort study on psychosocial adjustment and psychopathology in adolescents and young adults with congenital heart disease. British Medical Journal Open. https:\/\/doi.org\/10.1136\/bmjopen-2012-001138.","journal-title":"British Medical Journal Open"},{"issue":"10","key":"2364_CR21","doi-asserted-by":"crossref","first-page":"662","DOI":"10.1111\/j.1440-1754.2007.01183.x","volume":"43","author":"P Toren","year":"2007","unstructured":"Toren, P., & Horesh, N. (2007). Psychiatric morbidity in adolescents operated in childhood for congenital cyanotic heart disease. Journal of Paediatrics and Child Health,43(10), 662\u2013666.","journal-title":"Journal of Paediatrics and Child Health"},{"issue":"4","key":"2364_CR22","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1097\/DBP.0b013e3180cabc3c","volume":"28","author":"M Miatton","year":"2007","unstructured":"Miatton, M., De Wolf, D., Francois, K., Thiery, E., & Vingerhoets, G. (2007). Behavior and self-perception in children with a surgically corrected congenital heart disease. Journal of Developmental and Behavioral Pediatrics,28(4), 294\u2013301.","journal-title":"Journal of Developmental and Behavioral Pediatrics"},{"issue":"5","key":"2364_CR23","doi-asserted-by":"crossref","first-page":"943","DOI":"10.1016\/j.jpeds.2012.04.010","volume":"161","author":"Q Wang","year":"2012","unstructured":"Wang, Q., Hay, M., Clarke, D., & Menahem, S. (2012). The prevalence and predictors of anxiety and depression in adolescents with heart disease. Journal of Pediatrics,161(5), 943\u2013946.","journal-title":"Journal of Pediatrics"},{"issue":"3","key":"2364_CR24","doi-asserted-by":"crossref","first-page":"495","DOI":"10.1016\/0022-3468(95)90065-9","volume":"30","author":"L Ludman","year":"1995","unstructured":"Ludman, L., & Spitz, L. (1995). Psychosocial adjustment of children treated for anorectal anomalies. Journal of Pediatric Surgery,30(3), 495\u2013499.","journal-title":"Journal of Pediatric Surgery"},{"issue":"7","key":"2364_CR25","doi-asserted-by":"crossref","first-page":"1156","DOI":"10.1016\/j.jpedsurg.2005.03.059","volume":"40","author":"S Funakosi","year":"2005","unstructured":"Funakosi, S., Hayashi, J., Kamiyama, T., Ueno, T., Ishii, T., Wada, M., et al. (2005). Psychosocial liaison-consultation for the children who have undergone repair of imperforate anus and Hirschsprung disease. Journal of Pediatric Surgery,40(7), 1156\u20131162.","journal-title":"Journal of Pediatric Surgery"},{"issue":"5","key":"2364_CR26","doi-asserted-by":"crossref","first-page":"638","DOI":"10.1016\/S0022-3468(96)90664-8","volume":"31","author":"TH Diseth","year":"1996","unstructured":"Diseth, T. H., & Emblem, R. (1996). Somatic function, mental health, and psychosocial adjustment of adolescents with anorectal anomalies. Journal of Pediatric Surgery,31(5), 638\u2013643.","journal-title":"Journal of Pediatric Surgery"},{"issue":"6","key":"2364_CR27","doi-asserted-by":"crossref","first-page":"832","DOI":"10.1002\/bjs.9111","volume":"100","author":"EP Athanasakos","year":"2013","unstructured":"Athanasakos, E. P., Kemal, K. I., Malliwal, R. S., Scott, S. M., Williams, N. S., Aziz, Q., et al. (2013). Clinical and psychosocial functioning in adolescents and young adults with anorectal malformations and chronic idiopathic constipation. British Journal of Surgery,100(6), 832\u2013839.","journal-title":"British Journal of Surgery"},{"issue":"3","key":"2364_CR28","doi-asserted-by":"crossref","first-page":"399","DOI":"10.1016\/S0022-3468(99)90485-2","volume":"34","author":"NH Bouman","year":"1999","unstructured":"Bouman, N. H., Koot, H. M., & Hazebroek, F. W. (1999). Long-term physical, psychological, and social functioning of children with esophageal atresia. Journal of Pediatric Surgery,34(3), 399\u2013404.","journal-title":"Journal of Pediatric Surgery"},{"issue":"1","key":"2364_CR29","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1017\/S1047951113000012","volume":"24","author":"Q Wang","year":"2014","unstructured":"Wang, Q., Hay, M., Clarke, D., & Menahem, S. (2014). Associations between knowledge of disease, depression and anxiety, social support, sense of coherence and optimism with health-related quality of life in an ambulatory sample of adolescents with heart disease. Cardiology in the Young,24(1), 126\u2013133.","journal-title":"Cardiology in the Young"},{"issue":"9","key":"2364_CR30","doi-asserted-by":"crossref","first-page":"2193","DOI":"10.1002\/ajmg.a.33605","volume":"152","author":"M Skreden","year":"2010","unstructured":"Skreden, M., Skari, H., Malt, U. F., Haugen, G., Pripp, A. H., Faugli, A., et al. (2010). Long-term parental psychological distress among parents of children with a malformation\u2014A prospective longitudinal study. American Journal of Medical Genetics Part A,152(9), 2193\u20132202.","journal-title":"American Journal of Medical Genetics Part A"},{"issue":"4","key":"2364_CR31","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1016\/S0022-3999(02)00301-X","volume":"52","author":"S Lawoko","year":"2002","unstructured":"Lawoko, S., & Soares, J. J. (2002). Distress and hopelessness among parents of children with congenital heart disease, parents of children with other diseases, and parents of healthy children. Journal of Psychosomatic Research,52(4), 193\u2013208.","journal-title":"Journal of Psychosomatic Research"},{"key":"2364_CR32","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2017.00102","author":"GA Kolaitis","year":"2017","unstructured":"Kolaitis, G. A., Meentken, M. G., & Utens, E. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics. https:\/\/doi.org\/10.3389\/fped.2017.00102.","journal-title":"Frontiers in Pediatrics"},{"issue":"4","key":"2364_CR33","doi-asserted-by":"crossref","first-page":"359","DOI":"10.2190\/PM.46.4.c","volume":"46","author":"A Sundus","year":"2013","unstructured":"Sundus, A., Siddique, O., Ibrahim, M. F., Aziz, S., & Khan, J. A. (2013). The role of children with congenital anomalies in generating parental depressive symptoms. International Journal of Psychiatry in Medicine,46(4), 359\u2013373.","journal-title":"International Journal of Psychiatry in Medicine"},{"issue":"8","key":"2364_CR34","doi-asserted-by":"crossref","first-page":"1480","DOI":"10.1016\/j.jpedsurg.2007.12.055","volume":"43","author":"S Nagata","year":"2008","unstructured":"Nagata, S., Funakosi, S., Amae, S., Yoshida, S., Ambo, H., Kudo, A., et al. (2008). Posttraumatic stress disorder in mothers of children who have undergone surgery for congenital disease at a pediatric surgery department. Journal of Pediatric Surgery,43(8), 1480\u20131486.","journal-title":"Journal of Pediatric Surgery"},{"issue":"5","key":"2364_CR35","doi-asserted-by":"crossref","first-page":"881","DOI":"10.1007\/s11136-007-9188-2","volume":"16","author":"MC Simeoni","year":"2007","unstructured":"Simeoni, M. C., Schmidt, S., Muehlan, H., Debensason, D., & Bullinger, M. (2007). Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module. Quality of Life Research,16(5), 881\u2013893.","journal-title":"Quality of Life Research"},{"issue":"2","key":"2364_CR36","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1111\/j.1651-2227.2008.01066.x","volume":"98","author":"JE Chaplin","year":"2009","unstructured":"Chaplin, J. E., Hanas, R., Lind, A., Tollig, H., Wramner, N., & Lindblad, B. (2009). Assessment of childhood diabetes-related quality-of-life in West Sweden. Acta Paediatrica,98(2), 361\u2013366.","journal-title":"Acta Paediatrica"},{"key":"2364_CR37","unstructured":"Pearson Assessment. (2005). Beck Youth Inventories (2nd ed.). Pearson Assessments. Retrieved September 03, 2019, from https:\/\/www.pearsonassessments.com\/store\/usassessments\/en\/Store\/Professional-Assessments\/Personality-%26-Biopsychosocial\/Beck-Youth-Inventories-%7C-Second-Edition\/p\/100000153.html."},{"key":"2364_CR38","volume-title":"Beck ungdomsskalor: Manual: Svensk version: [bed\u00f6mning av emotionell och social problematik hos barn och ungdomar]","author":"JS Beck","year":"2004","unstructured":"Beck, J. S., Beck, A. T., & Jolly, J. B. (2004). Beck ungdomsskalor: Manual: Svensk version: [bed\u00f6mning av emotionell och social problematik hos barn och ungdomar]. Bloomington, MN: NCS Pearson Inc."},{"key":"2364_CR39","volume-title":"BAI\u2014Beck Anxiety Inventory: Manual, svensk version","author":"AT Beck","year":"2005","unstructured":"Beck, A. T., & Steer, R. A. (2005). BAI\u2014Beck Anxiety Inventory: Manual, svensk version. Bloomington, MN: NCS Pearson Inc."},{"key":"2364_CR40","volume-title":"BDI-II: Beck Depression Inventory: manual, svensk version","author":"AT Beck","year":"2005","unstructured":"Beck, A. T., Steer, R. A., & Brown, G. K. (2005). BDI-II: Beck Depression Inventory: manual, svensk version. Bloomington, MN: NCS Pearson Inc."},{"issue":"6","key":"2364_CR41","doi-asserted-by":"crossref","first-page":"389","DOI":"10.1016\/j.eurpsy.2005.09.003","volume":"21","author":"P Jylh\u00e4","year":"2006","unstructured":"Jylh\u00e4, P., & Isomets\u00e4, E. (2006). Temperament, character and symptoms of anxiety and depression in the general population. European Psychiatry,21(6), 389\u2013395.","journal-title":"European Psychiatry"},{"issue":"4","key":"2364_CR42","doi-asserted-by":"crossref","first-page":"450","DOI":"10.1037\/1040-3590.7.4.450","volume":"7","author":"MM Gillis","year":"1995","unstructured":"Gillis, M. M., Haaga, D. A. F., & Ford, G. T. (1995). Normative values for the Beck Anxiety Inventory, Fear Questionnaire, Penn State Worry Questionnaire, and Social Phobia and Anxiety Inventory. Psychological Assessment,7(4), 450\u2013455.","journal-title":"Psychological Assessment"},{"issue":"2","key":"2364_CR43","doi-asserted-by":"crossref","first-page":"626","DOI":"10.1017\/S1138741600004637","volume":"11","author":"I Mag\u00e1n","year":"2008","unstructured":"Mag\u00e1n, I., Sanz, J., & Garc\u00eda-Vera, M. P. (2008). Psychometric properties of a Spanish version of the Beck Anxiety Inventory (BAI) in general population. The Spanish Journal of Psychology,11(2), 626\u2013640.","journal-title":"The Spanish Journal of Psychology"},{"issue":"4","key":"2364_CR44","doi-asserted-by":"crossref","first-page":"284","DOI":"10.1037\/1040-3590.6.4.284","volume":"6","author":"DV Cicchetti","year":"1994","unstructured":"Cicchetti, D. V. (1994). Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychological Assessment,6(4), 284\u2013290.","journal-title":"Psychological Assessment"},{"key":"2364_CR45","volume-title":"Statistical power analysis for the behavioral sciences","author":"J Cohen","year":"1988","unstructured":"Cohen, J. (1988). Statistical power analysis for the behavioral sciences. Hillsdale, MI: L. Erlbaum Associates."},{"key":"2364_CR46","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0037099","author":"IG de Jong","year":"2012","unstructured":"de Jong, I. G., Reinders-Messelink, H. A., Janssen, W. G., Poelma, M. J., van Wijk, I., & van der Sluis, C. K. (2012). Mixed feelings of children and adolescents with unilateral congenital below elbow deficiency: An online focus group study. PLoS One. https:\/\/doi.org\/10.1371\/journal.pone.0037099.","journal-title":"PLoS One"},{"issue":"6","key":"2364_CR47","doi-asserted-by":"crossref","first-page":"781","DOI":"10.1111\/j.1365-2214.2008.00851.x","volume":"34","author":"W Bjorbaekmo","year":"2008","unstructured":"Bjorbaekmo, W., & Engelsrud, G. (2008). I am almost like a fish: An investigation of how children with congenital heart disease experience and perform movement in daily life. Child: Care, Health and Development,34(6), 781\u2013788.","journal-title":"Child: Care, Health and Development"},{"issue":"6","key":"2364_CR48","doi-asserted-by":"crossref","first-page":"423","DOI":"10.1016\/S0882-5963(03)00029-0","volume":"18","author":"M Nisell","year":"2003","unstructured":"Nisell, M., \u00d6jmyr-Joelsson, M., Frenckner, B., Rydelius, P. A., & Christensson, K. (2003). How a family is affected when a child is born with anorectal malformation. Interviews with three patients and their parents. Journal of Pediatric Nursing,18(6), 423\u2013432.","journal-title":"Journal of Pediatric Nursing"},{"issue":"9","key":"2364_CR49","doi-asserted-by":"crossref","first-page":"925","DOI":"10.1007\/s00383-013-3359-8","volume":"29","author":"C Grano","year":"2013","unstructured":"Grano, C., Bucci, S., Aminoff, D., Lucidi, F., & Violani, C. (2013). Quality of life in children and adolescents with anorectal malformation. Pediatric Surgery International,29(9), 925\u2013930.","journal-title":"Pediatric Surgery International"},{"key":"2364_CR50","first-page":"41","volume-title":"Issues in the care of children with chronic illness","author":"IB Pless","year":"1985","unstructured":"Pless, I. B., & Perrin, J. M. (1985). Issues common to a variety of illnesses. In N. Hobbs & J. M. Perrin (Eds.), Issues in the care of children with chronic illness (pp. 41\u201360). San Francisco, CA: Jossey-Bass."},{"key":"2364_CR51","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2014-0352","author":"J Jardine","year":"2014","unstructured":"Jardine, J., Glinianaia, S. V., McConachie, H., Embleton, N. D., & Rankin, J. (2014). Self-reported quality of life of young children with conditions from early infancy: A systematic review. Pediatrics. https:\/\/doi.org\/10.1542\/peds.2014-0352.","journal-title":"Pediatrics"},{"issue":"1","key":"2364_CR52","doi-asserted-by":"crossref","first-page":"107","DOI":"10.1037\/a0035800","volume":"59","author":"KR Bogart","year":"2014","unstructured":"Bogart, K. R. (2014). The role of disability self-concept in adaptation to congenital or acquired disability. Rehabilitation Psychology,59(1), 107\u2013115.","journal-title":"Rehabilitation Psychology"},{"issue":"6","key":"2364_CR53","doi-asserted-by":"crossref","first-page":"895","DOI":"10.1007\/s11136-008-9350-5","volume":"17","author":"P Upton","year":"2008","unstructured":"Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research,17(6), 895\u2013913.","journal-title":"Quality of Life Research"},{"issue":"10","key":"2364_CR54","doi-asserted-by":"crossref","first-page":"1550","DOI":"10.1111\/j.1651-2227.2010.01855.x","volume":"99","author":"K Ylim\u00e4inen","year":"2010","unstructured":"Ylim\u00e4inen, K., Nachemson, A., Sommerstein, K., Stockselius, A., & Norling Hermansson, L. (2010). Health-related quality of life in Swedish children and adolescents with limb reduction deficiency. Acta Paediatrica,99(10), 1550\u20131555.","journal-title":"Acta Paediatrica"},{"issue":"3","key":"2364_CR55","doi-asserted-by":"crossref","first-page":"286","DOI":"10.3109\/02770903.2011.555031","volume":"48","author":"K Petsios","year":"2011","unstructured":"Petsios, K., Priftis, K. N., Tsoumakas, C., Hatziagorou, E., Tsanakas, J. N., Galanis, P., et al. (2011). Level of parent-asthmatic child agreement on health-related quality of life. Journal of Asthma,48(3), 286\u2013297.","journal-title":"Journal of Asthma"},{"key":"2364_CR56","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-10-10","author":"JN Sattoe","year":"2012","unstructured":"Sattoe, J. N., van Staa, A., & Moll, H. A. (2012). The proxy problem anatomized: child-parent disagreement in health related quality of life reports of chronically ill adolescents. Health and Quality of Life Outcomes. https:\/\/doi.org\/10.1186\/1477-7525-10-10.","journal-title":"Health and Quality of Life Outcomes"},{"issue":"10","key":"2364_CR57","doi-asserted-by":"crossref","first-page":"1299","DOI":"10.1007\/s00431-013-2049-9","volume":"172","author":"C Eiser","year":"2013","unstructured":"Eiser, C., & Varni, J. W. (2013). Health-related quality of life and symptom reporting: Similarities and differences between children and their parents. European Journal of Pediatrics,172(10), 1299\u20131304.","journal-title":"European Journal of Pediatrics"},{"key":"2364_CR58","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1186\/1477-7525-3-22","volume":"100","author":"P Upton","year":"2005","unstructured":"Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., Maddocks, A., et al. (2005). Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes,100, 150. https:\/\/doi.org\/10.1186\/1477-7525-3-22.","journal-title":"Health and Quality of Life Outcomes"},{"issue":"12","key":"2364_CR59","doi-asserted-by":"crossref","first-page":"1712","DOI":"10.1002\/art.25008","volume":"61","author":"K Mulligan","year":"2009","unstructured":"Mulligan, K., Etheridge, A., Kassoumeri, L., Wedderburn, L. R., & Newman, S. (2009). Do mothers and fathers hold similar views about their child\u2019s arthritis? Arthritis and Rheumatism,61(12), 1712\u20131718.","journal-title":"Arthritis and Rheumatism"},{"issue":"4","key":"2364_CR60","doi-asserted-by":"crossref","first-page":"563","DOI":"10.1016\/j.jpedsurg.2015.09.023","volume":"51","author":"M Dellenmark-Blom","year":"2016","unstructured":"Dellenmark-Blom, M., Chaplin, J. E., Gatzinsky, V., J\u00f6nsson, L., Wigert, H., Apell, J., et al. (2016). Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients. Journal of Pediatric Surgery,51(4), 563\u2013569.","journal-title":"Journal of Pediatric Surgery"},{"issue":"8","key":"2364_CR61","doi-asserted-by":"crossref","first-page":"959","DOI":"10.1093\/jpepsy\/jsz024","volume":"44","author":"M Pinquart","year":"2019","unstructured":"Pinquart, M. (2019). Meta-analysis of anxiety in parents of young people with chronic health conditions. Journal of Pediatric Psychology,44(8), 959\u2013969.","journal-title":"Journal of Pediatric Psychology"},{"issue":"2","key":"2364_CR62","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1093\/jpepsy\/jsy075","volume":"44","author":"M Pinquart","year":"2019","unstructured":"Pinquart, M. (2019). Featured article: Depressive symptoms in parents of children with chronic health conditions: A meta-analysis. Journal of Pediatric Psychology,44(2), 139\u2013149.","journal-title":"Journal of Pediatric Psychology"},{"issue":"5","key":"2364_CR63","doi-asserted-by":"crossref","first-page":"235","DOI":"10.1002\/smi.946","volume":"18","author":"J Bergdahl","year":"2002","unstructured":"Bergdahl, J., & Bergdahl, M. (2002). Perceived stress in adults: Prevalence and association of depression, anxiety and medication in a Swedish population. Stress and Health: Journal of the International Society for the Investigation of Stress,18(5), 235\u2013241.","journal-title":"Stress and Health: Journal of the International Society for the Investigation of Stress"},{"key":"2364_CR64","unstructured":"Public Health Agency of Sweden. (2019). Statistik \u00f6ver vuxnas psykiska h\u00e4lsa. Public Health Agency of Sweden. Retrieved June 03, 2019, from https:\/\/www.folkhalsomyndigheten.se\/livsvillkor-levnadsvanor\/psykisk-halsa-och-suicidprevention\/statistik-psykisk-halsa\/vuxnas-psykiska-halsa\/."},{"issue":"3","key":"2364_CR65","doi-asserted-by":"crossref","first-page":"207","DOI":"10.1016\/j.pedn.2007.09.004","volume":"24","author":"M \u00d6jmyr-Joelsson","year":"2009","unstructured":"\u00d6jmyr-Joelsson, M., Nisell, M., Frenckner, B., Rydelius, P. A., & Christensson, K. (2009). A gender perspective on the extent to which mothers and fathers each take responsibility for care of a child with high and intermediate imperforate anus. Journal of Pediatric Nursing,24(3), 207\u2013215.","journal-title":"Journal of Pediatric Nursing"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-019-02364-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s11136-019-02364-w\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-019-02364-w.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,7,27]],"date-time":"2024-07-27T03:04:08Z","timestamp":1722049448000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s11136-019-02364-w"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,11,18]]},"references-count":65,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2020,4]]}},"alternative-id":["2364"],"URL":"https:\/\/doi.org\/10.1007\/s11136-019-02364-w","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"type":"print","value":"0962-9343"},{"type":"electronic","value":"1573-2649"}],"subject":[],"published":{"date-parts":[[2019,11,18]]},"assertion":[{"value":"6 November 2019","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"18 November 2019","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance to ethical standards"}},{"value":"The authors declare that they have no conflict of interest.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"All procedures performed in studies involving human participants were in accordance with the ethical standards of the Regional Ethical Review Board in Uppsala (Registration Number 2015\/264, Amendments 2015\/264\/2, 2015\/264\/3, 2019-00139) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all individual participants in the study. For children below the age of 15, informed consent was obtained only from the parents.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}