{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,23]],"date-time":"2026-09-23T23:12:36Z","timestamp":1790205156553,"version":"4.1.0"},"reference-count":29,"publisher":"Elsevier BV","issue":"3","license":[{"start":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T00:00:00Z","timestamp":1654041600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T00:00:00Z","timestamp":1654041600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jpurol.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Urology"],"published-print":{"date-parts":[[2022,6]]},"DOI":"10.1016\/j.jpurol.2022.03.002","type":"journal-article","created":{"date-parts":[[2022,3,5]],"date-time":"2022-03-05T11:26:48Z","timestamp":1646479608000},"page":"290.e1-290.e8","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":21,"title":["Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model"],"prefix":"10.1016","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8667-2649","authenticated-orcid":false,"given":"Leonid I.","family":"Aksenov","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3215-682X","authenticated-orcid":false,"given":"Rebecca J.","family":"Fairchild","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kevin T.","family":"Hobbs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rohit","family":"Tejwani","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4764-8018","authenticated-orcid":false,"given":"John S.","family":"Wiener","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan C.","family":"Routh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.jpurol.2022.03.002_bib1","doi-asserted-by":"crossref","first-page":"1590","DOI":"10.1016\/j.juro.2013.04.034","article-title":"Contemporary epidemiological trends in complex congenital genitourinary anomalies","volume":"190","author":"Lloyd","year":"2013","journal-title":"J Urol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib2","unstructured":"Spina Bifida Association. What is spina bifida? https:\/\/www.spinabifidaassociation.org\/what-is-spina-bifida-2\/[accessed 15 December 2021]."},{"key":"10.1016\/j.jpurol.2022.03.002_bib3","doi-asserted-by":"crossref","first-page":"15007","DOI":"10.1038\/nrdp.2015.7","article-title":"Spina bifida","volume":"1","author":"Copp","year":"2015","journal-title":"Nat Rev Dis Prim"},{"key":"10.1016\/j.jpurol.2022.03.002_bib4","doi-asserted-by":"crossref","first-page":"114","DOI":"10.1159\/000056005","article-title":"Spina bifida outcome: a 25-year prospective","volume":"34","author":"Bowman","year":"2001","journal-title":"Pediatr Neurosurg"},{"key":"10.1016\/j.jpurol.2022.03.002_bib5","doi-asserted-by":"crossref","first-page":"S74","DOI":"10.1016\/j.amepre.2015.10.012","article-title":"Retrospective assessment of cost savings from prevention: folic acid fortification and spina bifida in the U.S","volume":"50","author":"Grosse","year":"2016","journal-title":"Am J Prev Med"},{"key":"10.1016\/j.jpurol.2022.03.002_bib6","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1016\/j.dhjo.2019.01.007","article-title":"Hospital and ED charges for spina bifida care in the United States between 2006 and 2014: over $2 billion annually","volume":"12","author":"Inouye","year":"2019","journal-title":"Disabil Health J"},{"key":"10.1016\/j.jpurol.2022.03.002_bib7","first-page":"80","article-title":"Financial toxicity, part I: a new name for a growing problem","volume":"27","author":"Zafar","year":"2013","journal-title":"Oncol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib8","doi-asserted-by":"crossref","first-page":"1061","DOI":"10.1093\/annonc\/mdz140","article-title":"Methods for measuring financial toxicity after cancer diagnosis and treatment: a systematic review and its implications","volume":"30","author":"Witte","year":"2019","journal-title":"Ann Oncol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib9","doi-asserted-by":"crossref","first-page":"765","DOI":"10.1001\/jamaoncol.2016.4850","article-title":"Mitigating financial toxicity among US patients with cancer","volume":"3","author":"de Souza","year":"2017","journal-title":"JAMA Oncol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib10","doi-asserted-by":"crossref","first-page":"6","DOI":"10.1177\/1043454218810137","article-title":"A aonceptual model of financial toxicity in pediatric oncology","volume":"36","author":"Santacroce","year":"2019","journal-title":"J Pediatr Oncol Nurs"},{"key":"10.1016\/j.jpurol.2022.03.002_bib11","doi-asserted-by":"crossref","first-page":"3245","DOI":"10.1002\/cncr.28814","article-title":"The development of a financial toxicity patient-reported outcome in cancer: the COST measure","volume":"120","author":"de Souza","year":"2014","journal-title":"Cancer"},{"key":"10.1016\/j.jpurol.2022.03.002_bib12","unstructured":"National Cancer Institute. Financial toxicity and cancer treatment (PDQ\u00ae): health professional version. https:\/\/www.ncbi.nlm.nih.gov\/books\/NBK384502\/[accessed 20 December 2021]."},{"key":"10.1016\/j.jpurol.2022.03.002_bib13","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1016\/j.juro.2017.10.039","article-title":"Addressing financial toxicity: the role of the urologist","volume":"200","author":"Mossanen","year":"2018","journal-title":"J Urol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib14","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1111\/j.1469-8749.1986.tb03831.x","article-title":"Assessing the impact of a child with spina bifida on the family","volume":"28","author":"McCormick","year":"1986","journal-title":"Dev Med Child Neurol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib15","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1177\/0272989X08322014","article-title":"Labor market productivity costs for caregivers of children with spina bifida: a population-based analysis","volume":"29","author":"Tilford","year":"2009","journal-title":"Med Decis Making"},{"key":"10.1016\/j.jpurol.2022.03.002_bib16","doi-asserted-by":"crossref","first-page":"4","DOI":"10.1007\/s40120-012-0004-8","article-title":"The impact of spina bifida on caregivers","volume":"1","author":"Rofail","year":"2012","journal-title":"Neurol Ther"},{"key":"10.1016\/j.jpurol.2022.03.002_bib17","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.1007\/s11135-017-0574-8","article-title":"Saturation in qualitative research: exploring its conceptualization and operationalization","volume":"52","author":"Saunders","year":"2018","journal-title":"Qual Quantity"},{"key":"10.1016\/j.jpurol.2022.03.002_bib18","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"Braun","year":"2006","journal-title":"Qual Res Psychol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib19","series-title":"Qualitative research practice: a guide for social science students and researchers","author":"Ritchie","year":"2003"},{"key":"10.1016\/j.jpurol.2022.03.002_bib20","doi-asserted-by":"crossref","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: a synthesis of recommendations","volume":"89","author":"O'Brien","year":"2014","journal-title":"Acad Med"},{"issue":"Suppl 5","key":"10.1016\/j.jpurol.2022.03.002_bib21","first-page":"S619","article-title":"Assessment of financial burden as a standard of care in pediatric oncology","volume":"62","author":"Pelletier","year":"2015","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.jpurol.2022.03.002_bib22","first-page":"1","article-title":"Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer","volume":"12","author":"Danhauer","year":"2021","journal-title":"Psycho Oncol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib23","first-page":"306","article-title":"Validation of QUALAS-T, a health-related quality of life instrument for teenagers with spina bifida","volume":"70","author":"Szymanski","year":"2017","journal-title":"Cent European J Urol"},{"key":"10.1016\/j.jpurol.2022.03.002_bib24","doi-asserted-by":"crossref","first-page":"178","DOI":"10.1016\/j.urology.2015.09.027","article-title":"Quality of life assessment in spina bifida for children (QUALAS-C): development and validation of a novel health-related quality of life instrument","volume":"87","author":"Szymanski","year":"2016","journal-title":"Urol Times"},{"key":"10.1016\/j.jpurol.2022.03.002_bib25","doi-asserted-by":"crossref","first-page":"102","DOI":"10.1186\/1477-7525-6-102","article-title":"Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis","volume":"6","author":"Mazer","year":"2008","journal-title":"Health Qual Life Outcome"},{"key":"10.1016\/j.jpurol.2022.03.002_bib26","doi-asserted-by":"crossref","first-page":"284","DOI":"10.1097\/BPO.0b013e31820fc522","article-title":"Development and initial validation of the assessment of caregiver experience with neuromuscular disease","volume":"31","author":"Matsumoto","year":"2011","journal-title":"J Pediatr Orthop"},{"key":"10.1016\/j.jpurol.2022.03.002_bib27","doi-asserted-by":"crossref","first-page":"476","DOI":"10.1002\/cncr.30369","article-title":"Measuring financial toxicity as a clinically relevant patient-reported outcome: the validation of the COmprehensive Score for financial Toxicity (COST)","volume":"123","author":"de Souza","year":"2017","journal-title":"Cancer"},{"key":"10.1016\/j.jpurol.2022.03.002_bib28","doi-asserted-by":"crossref","first-page":"1739","DOI":"10.1002\/cncr.33559","article-title":"Systematic review of financial burden assessment in cancer: evaluation of measures and utility among adolescents and young adults and caregivers","volume":"127","author":"Salsman","year":"2021","journal-title":"Cancer"},{"key":"10.1016\/j.jpurol.2022.03.002_bib29","doi-asserted-by":"crossref","first-page":"1868","DOI":"10.1200\/JCO.2017.77.3663","article-title":"Predictors of unemployment after breast cancer surgery: a systematic review and meta-analysis of observational studies","volume":"36","author":"Wang","year":"2018","journal-title":"J Clin Oncol"}],"container-title":["Journal of Pediatric Urology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1477513122000973?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1477513122000973?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,26]],"date-time":"2025-10-26T13:51:37Z","timestamp":1761486697000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1477513122000973"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,6]]},"references-count":29,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2022,6]]}},"alternative-id":["S1477513122000973"],"URL":"https:\/\/doi.org\/10.1016\/j.jpurol.2022.03.002","relation":{},"ISSN":["1477-5131"],"issn-type":[{"value":"1477-5131","type":"print"}],"subject":[],"published":{"date-parts":[[2022,6]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Financial toxicity among individuals with spina bifida and their families: A qualitative study and conceptual model","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric Urology","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpurol.2022.03.002","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 Published by Elsevier Ltd on behalf of Journal of Pediatric Urology Company.","name":"copyright","label":"Copyright"}]}}