{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,20]],"date-time":"2026-06-20T08:50:40Z","timestamp":1781945440150,"version":"3.54.5"},"reference-count":42,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T00:00:00Z","timestamp":1777593600000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jpeds.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["The Journal of Pediatrics"],"published-print":{"date-parts":[[2026,5]]},"DOI":"10.1016\/j.jpeds.2026.114988","type":"journal-article","created":{"date-parts":[[2026,1,16]],"date-time":"2026-01-16T16:56:45Z","timestamp":1768582605000},"page":"114988","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":0,"special_numbering":"C","title":["Psychosocial Functioning of Youth with Hereditary Polyposis Syndromes and Their Caregivers"],"prefix":"10.1016","volume":"292","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2207-4604","authenticated-orcid":false,"given":"Michele H.","family":"Maddux","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Caitlin","family":"Lawson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Stoecklein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas M.","family":"Attard","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"key":"10.1016\/j.jpeds.2026.114988_bib1","doi-asserted-by":"crossref","first-page":"703","DOI":"10.1007\/s00401-020-02124-y","article-title":"An update on the CNS manifestations of brain tumor polyposis syndromes","volume":"139","author":"Kim","year":"2020","journal-title":"Acta Neuropathol"},{"key":"10.1016\/j.jpeds.2026.114988_bib2","doi-asserted-by":"crossref","first-page":"471","DOI":"10.1136\/jmedgenet-2016-104484","article-title":"A retrospective chart review of the features of PTEN hamartoma tumour syndrome in children","volume":"54","author":"Hansen-Kiss","year":"2017","journal-title":"J Med Genet"},{"key":"10.1016\/j.jpeds.2026.114988_bib3","doi-asserted-by":"crossref","DOI":"10.1002\/pbc.29859","article-title":"Clinical and molecular features of pediatric cancer patients with Lynch syndrome","volume":"69","author":"Scollon","year":"2022","journal-title":"Pediatr Blood Cancer"},{"key":"10.1016\/j.jpeds.2026.114988_bib4","doi-asserted-by":"crossref","first-page":"757","DOI":"10.1586\/17474124.2015.1026328","article-title":"Familial colorectal cancer syndromes: an overview of clinical management","volume":"9","author":"Sammour","year":"2015","journal-title":"Expert Rev Gastroenterol Hepatol"},{"key":"10.1016\/j.jpeds.2026.114988_bib5","doi-asserted-by":"crossref","DOI":"10.1016\/j.ejon.2022.102117","article-title":"Experiences of living with Lynch syndrome: a reflexive thematic analysis","volume":"58","author":"Warner","year":"2022","journal-title":"Eur J Oncol Nurs"},{"key":"10.1016\/j.jpeds.2026.114988_bib6","doi-asserted-by":"crossref","first-page":"697","DOI":"10.1097\/01.gim.0000245574.75877.b9","article-title":"Impact of familial adenomatous polyposis on young adults: attitudes toward genetic testing, support, and information needs","volume":"8","author":"Andrews","year":"2006","journal-title":"Genet Med"},{"key":"10.1016\/j.jpeds.2026.114988_bib7","doi-asserted-by":"crossref","first-page":"289","DOI":"10.1002\/pon.1570","article-title":"Psychological distress and use of psychosocial support in familial adenomatous polyposis","volume":"19","author":"Douma","year":"2010","journal-title":"Psychooncology"},{"key":"10.1016\/j.jpeds.2026.114988_bib8","doi-asserted-by":"crossref","first-page":"259","DOI":"10.1089\/jayao.2017.0102","article-title":"Cancer-related genetic testing and personalized medicine for adolescents: a narrative review of impact and understanding","volume":"7","author":"Vetsch","year":"2018","journal-title":"J Adolesc Young Adult Oncol"},{"key":"10.1016\/j.jpeds.2026.114988_bib9","doi-asserted-by":"crossref","first-page":"957","DOI":"10.14309\/ajg.0000000000002612","article-title":"Psychiatric and educational aspects of familial adenomatous polyposis: a nationwide Danish cohort study with matched nonexposed individuals","volume":"119","author":"Karstensen","year":"2024","journal-title":"Am J Gastroenterol"},{"key":"10.1016\/j.jpeds.2026.114988_bib10","doi-asserted-by":"crossref","first-page":"242","DOI":"10.1186\/s13023-023-02837-9","article-title":"Living with a rare disease - experiences and needs in pediatric patients and their parents","volume":"18","author":"Witt","year":"2023","journal-title":"Orphanet J Rare Dis"},{"key":"10.1016\/j.jpeds.2026.114988_bib11","doi-asserted-by":"crossref","first-page":"4510","DOI":"10.3390\/jcm13154510","article-title":"Navigating the unique challenges of caregiving for children with rare diseases: are the care experiences of all caregivers the same? A focus on life-limiting rare diseases","volume":"13","author":"Walkowiak","year":"2024","journal-title":"J Clin Med"},{"key":"10.1016\/j.jpeds.2026.114988_bib12","doi-asserted-by":"crossref","first-page":"1993","DOI":"10.1007\/s10995-014-1445-8","article-title":"Anxiety and depression in mothers and fathers of a chronically ill child","volume":"18","author":"van Oers","year":"2014","journal-title":"Matern Child Health J"},{"key":"10.1016\/j.jpeds.2026.114988_bib13","doi-asserted-by":"crossref","first-page":"283","DOI":"10.1093\/jpepsy\/jst074","article-title":"Emotional functioning, barriers, and medication adherence in pediatric transplant recipients","volume":"39","author":"McCormick King","year":"2014","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib14","doi-asserted-by":"crossref","first-page":"282","DOI":"10.1093\/jpepsy\/jsr092","article-title":"Treatment adherence in adolescents with inflammatory bowel disease: the collective impact of barriers to adherence and anxiety\/depressive symptoms","volume":"37","author":"Gray","year":"2012","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib15","doi-asserted-by":"crossref","first-page":"1097","DOI":"10.1093\/jpepsy\/jsz049","article-title":"Meta-analysis: Association of parent and child mental health with pediatric health care utilization","volume":"44","author":"Lavigne","year":"2019","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib16","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform"},{"key":"10.1016\/j.jpeds.2026.114988_bib17","doi-asserted-by":"crossref","DOI":"10.1016\/j.jbi.2019.103208","article-title":"The REDCap consortium: building an international community of software platform partners","volume":"95","author":"Harris","year":"2019","journal-title":"J Biomed Inform"},{"key":"10.1016\/j.jpeds.2026.114988_bib18","doi-asserted-by":"crossref","first-page":"223","DOI":"10.1891\/rtnp.16.4.223.53023","article-title":"Illness uncertainty, perceived control, and psychological distress among adolescents with type 1 diabetes","volume":"16","author":"Hoff","year":"2002","journal-title":"Res Theor Nurs Pract"},{"key":"10.1016\/j.jpeds.2026.114988_bib19","first-page":"224","article-title":"Children's perceived illness uncertainty as a moderator in the parent-child distress relation in juvenile","volume":"50","author":"White","year":"2005","journal-title":"Rheum Dis"},{"key":"10.1016\/j.jpeds.2026.114988_bib20","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1097\/00005650-199902000-00003","article-title":"The PedsQL: measurement model for the pediatric quality of life inventory","volume":"37","author":"Varni","year":"1999","journal-title":"Med Care"},{"key":"10.1016\/j.jpeds.2026.114988_bib21","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1367\/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2","article-title":"The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity","volume":"3","author":"Varni","year":"2003","journal-title":"Ambul Pediatr"},{"key":"10.1016\/j.jpeds.2026.114988_bib22","first-page":"613","article-title":"An ultra-brief screening scale for anxiety and depression: the PHQ-4","volume":"50","author":"Kroenke","year":"2009","journal-title":"Psychosomatics"},{"key":"10.1016\/j.jpeds.2026.114988_bib23","series-title":"Maternal guilt following pediatric burn injury","author":"Ung","year":"2025"},{"key":"10.1016\/j.jpeds.2026.114988_bib24","series-title":"Initial validation of clinical 4-item measure of pediatric burn injury specific parental guilt","author":"Song","year":"2020"},{"key":"10.1016\/j.jpeds.2026.114988_bib25","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1007\/s10689-025-00474-8","article-title":"A coordinated multidisciplinary model of care is needed for child and family centered care in pediatric genetic cancer risk services: a scoping review","volume":"24","author":"Grant","year":"2025","journal-title":"Fam Cancer"},{"key":"10.1016\/j.jpeds.2026.114988_bib26","doi-asserted-by":"crossref","first-page":"428","DOI":"10.1097\/MPG.0000000000002247","article-title":"Management of familial adenomatous polyposis in children and adolescents: position paper from the ESPGHAN Polyposis Working Group","volume":"68","author":"Hyer","year":"2019","journal-title":"J Pediatr Gastroenterol Nutr"},{"key":"10.1016\/j.jpeds.2026.114988_bib27","first-page":"438","article-title":"Psychological implications of living with familial adenomatous polyposis","volume":"74","author":"Claes","year":"2011","journal-title":"Acta Gastroenterol Belg"},{"key":"10.1016\/j.jpeds.2026.114988_bib28","doi-asserted-by":"crossref","first-page":"1204","DOI":"10.1097\/DCR.0000000000001459","article-title":"Mental health symptoms in patients with familial adenomatous polyposis: an observational study","volume":"62","author":"Wood","year":"2019","journal-title":"Dis Colon Rectum"},{"key":"10.1016\/j.jpeds.2026.114988_bib29","doi-asserted-by":"crossref","first-page":"409","DOI":"10.1007\/s10897-009-9231-2","article-title":"Psychosocial impact of familial adenomatous polyposis on young adults: a qualitative study","volume":"18","author":"Mireskandari","year":"2009","journal-title":"J Genet Couns"},{"key":"10.1016\/j.jpeds.2026.114988_bib30","doi-asserted-by":"crossref","first-page":"436","DOI":"10.1097\/DCR.0b013e318245645a","article-title":"Quality of life and functional outcome for individuals who underwent very early colectomy for familial adenomatous polyposis","volume":"55","author":"Durno","year":"2012","journal-title":"Dis Colon Rectum"},{"key":"10.1016\/j.jpeds.2026.114988_bib31","doi-asserted-by":"crossref","first-page":"1951","DOI":"10.1080\/13548506.2021.1990361","article-title":"Meaningful relationships as a driving force in the experience of parents of a child living with polyposis conditions","volume":"27","author":"Samson","year":"2022","journal-title":"Psychol Health Med"},{"key":"10.1016\/j.jpeds.2026.114988_bib32","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1186\/s11689-021-09406-w","article-title":"Behavioural and psychological features of PTEN mutations: a systematic review of the literature and meta-analysis of the prevalence of autism spectrum disorder characteristics","volume":"14","author":"Cummings","year":"2022","journal-title":"J Neurodev Disord"},{"key":"10.1016\/j.jpeds.2026.114988_bib33","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1200\/JCO.2024.42.23_suppl.194","article-title":"Identifying risk factors associated with self-reported lower quality of life (QoL) in individuals with PTEN hamartoma tumor syndrome","volume":"42","author":"Schmidt","year":"2024","journal-title":"J Clin Oncol"},{"key":"10.1016\/j.jpeds.2026.114988_bib34","doi-asserted-by":"crossref","first-page":"51","DOI":"10.1207\/S15326888CHC3201_4","article-title":"Anxiety and depression in older adolescents with long-standing asthma: the role of illness uncertainty","volume":"32","author":"Hommel","year":"2003","journal-title":"Child Health Care"},{"key":"10.1016\/j.jpeds.2026.114988_bib35","doi-asserted-by":"crossref","first-page":"490","DOI":"10.1093\/jpepsy\/jsy091","article-title":"Disease severity and depressive symptoms in adolescents with inflammatory bowel disease: the mediating role of parent and youth illness uncertainty","volume":"44","author":"Baudino","year":"2019","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib36","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1207\/s15326888chc3502_3","article-title":"The relationship of illness uncertainty and attributional style to long-term psychological distress in parents of children with type 1 diabetes mellitus","volume":"35","author":"Carpentier","year":"2006","journal-title":"Children\u2019s Health Care"},{"key":"10.1016\/j.jpeds.2026.114988_bib37","doi-asserted-by":"crossref","first-page":"361","DOI":"10.1097\/DBP.0b013e318210ff2c","article-title":"The association of illness uncertainty to parent and youth adjustment in juvenile rheumatic diseases: effect of youth age","volume":"32","author":"Fedele","year":"2011","journal-title":"J Dev Behav Pediatr"},{"key":"10.1016\/j.jpeds.2026.114988_bib38","doi-asserted-by":"crossref","first-page":"395","DOI":"10.1093\/jpepsy\/jsw097","article-title":"Meta-analysis: Caregiver and youth uncertainty in pediatric chronic illness","volume":"42","author":"Szulczewski","year":"2017","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib39","doi-asserted-by":"crossref","first-page":"149","DOI":"10.1093\/jpepsy\/22.2.149","article-title":"Relating parent and family functioning to the psychological adjustment of children with chronic health conditions: what have we learned? What do we need to know?","volume":"22","author":"Drotar","year":"1997","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib40","doi-asserted-by":"crossref","first-page":"1156","DOI":"10.1093\/jpepsy\/jsac050","article-title":"Parenting stress over the first year of inflammatory bowel disease diagnosis","volume":"47","author":"Rea","year":"2022","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib41","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1093\/jpepsy\/jsac089","article-title":"The socioecology of parental adjustment to pediatric cancer: the roles of individual and neighborhood socioeconomic status in parental social support and depressive symptoms","volume":"48","author":"Davidson","year":"2023","journal-title":"J Pediatr Psychol"},{"key":"10.1016\/j.jpeds.2026.114988_bib42","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1093\/jpepsy\/jsv074","article-title":"Systematic review: a reevaluation and update of the integrative (Trajectory) model of pediatric medical traumatic stress","volume":"41","author":"Price","year":"2016","journal-title":"J Pediatr Psychol"}],"container-title":["The Journal of Pediatrics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022347626000168?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022347626000168?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2026,6,20]],"date-time":"2026-06-20T08:17:14Z","timestamp":1781943434000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0022347626000168"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5]]},"references-count":42,"alternative-id":["S0022347626000168"],"URL":"https:\/\/doi.org\/10.1016\/j.jpeds.2026.114988","relation":{},"ISSN":["0022-3476"],"issn-type":[{"value":"0022-3476","type":"print"}],"subject":[],"published":{"date-parts":[[2026,5]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Psychosocial Functioning of Youth with Hereditary Polyposis Syndromes and Their Caregivers","name":"articletitle","label":"Article Title"},{"value":"The Journal of Pediatrics","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpeds.2026.114988","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2026 Elsevier Inc. All rights are reserved, including those for text and data mining, AI training, and similar technologies.","name":"copyright","label":"Copyright"}],"article-number":"114988"}}