{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T15:52:21Z","timestamp":1791388341642,"version":"4.3.3"},"reference-count":62,"publisher":"American Medical Association (AMA)","issue":"10","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAMA Netw Open"],"abstract":"\n Importance<\/jats:title>\n Adolescents and young adults (AYAs) with hereditary cancer predisposition face high rates of lifetime cancer risk. Models to support their understanding of cancer risk have not been developed.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n To assess the effect of an electronic chatbot-based cancer risk communication tool on AYAs\u2019 understanding of cancer risk.<\/jats:p>\n <\/jats:sec>\n \n Design, Setting, and Participants<\/jats:title>\n This randomized clinical trial was conducted at the Dana-Farber Cancer Institute, Emory University\/Children\u2019s Healthcare of Atlanta, University of Chicago, and University of Utah Huntsman Cancer Institute between December 20, 2022, and May 30, 2025 and compared cancer predisposition visits alone vs visits with an electronic chatbot-based cancer risk communication tool, AYA Risk Information and Screening Education, using baseline and follow-up surveys to assess changes in knowledge of cancer risk by age 30 years and over their lifetime, knowledge of recommended screening, and level of psychological distress. Eligible participants were English speakers aged 12 to 24 years, who had 1 of 9 hereditary cancer predisposition syndromes. The primary analysis was conducted according to the intention-to-treat principle. Data were analyzed from July 21 to September 3, 2025.<\/jats:p>\n <\/jats:sec>\n \n Intervention<\/jats:title>\n Chatbot-based intervention with cancer risk and recommended screening information tailored to each syndrome. Additional links to resource pages with chat summary content (learn), recommended age-based screening (plan), guidance about talking with peers (share), links to support organizations (connect), and coping and bereavement support (grow).<\/jats:p>\n <\/jats:sec>\n \n Main Outcomes and Measures<\/jats:title>\n The primary outcome was knowledge of cancer risk. The secondary outcomes were knowledge of recommended screening and level of psychological distress.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n Of 798 AYAs assessed, 106 AYAs were randomized and enrolled (54 to the intervention group and 52 to the control group). Participants\u2019 mean (SD) age was 18.3 (SD, 3.9) years, and 64% (68 of 106) were girls or women. At baseline, 38% of AYAs (20 of 52) in the control group and 52% (28 of 54) of AYAs in the intervention group had accurate knowledge of cancer risk by age 30 years. Following the clinic visit, 37% (19 of 52) of AYAs in the control group and 78% (42 of 54) in the chatbot-based intervention group had accurate knowledge, reflecting greater improvement in knowledge of cancer risk by age 30 years (OR, 3.50; 95% CI, 1.45-9.19;\n P<\/jats:italic>\n \u2009=\u2009.005). AYAs in the intervention group had non\u2013statistically significant improvements in knowledge of recommended screening (OR, 2.17; 95% CI, 0.85-5.59;\n P<\/jats:italic>\n \u2009=\u2009.11) and reductions in distress compared with AYAs in the control group (distress thermometer, \u03b2\u2009=\u2009\u22120.50; 95% CI, \u22121.09 to 0.08;\n P<\/jats:italic>\n \u2009=\u2009.09).\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions and Relevance<\/jats:title>\n In this randomized clinical trial, use of a chatbot-based intervention combined with a cancer predisposition clinic visit improved knowledge of cancer risk by age 30 years over a clinic visit alone, without increasing distress. Combining human interaction in the clinic with personalized, accurate electronic information can support AYAs with cancer predisposition and other serious conditions.<\/jats:p>\n <\/jats:sec>\n \n Trial Registration<\/jats:title>\n \n ClinicalTrials.gov Identifier:\n NCT04323774<\/jats:ext-link>\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1001\/jamanetworkopen.2026.35794","type":"journal-article","created":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T15:00:34Z","timestamp":1791385234000},"page":"e2635794","source":"Crossref","is-referenced-by-count":0,"title":["Chatbot Intervention and Cancer Risk Knowledge in Adolescents and Young Adults With Cancer Predisposition"],"prefix":"10.1001","volume":"9","author":[{"given":"Junne","family":"Kamihara","sequence":"first","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angel M.","family":"Cronin","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hajime","family":"Uno","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miki","family":"Horiguchi","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren","family":"Fisher","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaclyn","family":"Schienda","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Cancer Genetics and Prevention, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Vanderwall","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Cancer Genetics and Prevention, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Labcorp Genetics, San Francisco, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Moran","family":"Snir","sequence":"additional","affiliation":[{"name":"Nest Genomics, Wilmington, Delaware"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guy","family":"Snir","sequence":"additional","affiliation":[{"name":"Nest Genomics, Wilmington, Delaware"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emilie","family":"Simmons","sequence":"additional","affiliation":[{"name":"Nest Genomics, Wilmington, Delaware"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Khalaj","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Evan","family":"Goler","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kayla V.","family":"Hamilton","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Cancer Genetics and Prevention, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christopher C.","family":"Porter","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Disorders Center, Children\u2019s Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bojana","family":"Pencheva","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Disorders Center, Children\u2019s Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua D.","family":"Schiffman","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"},{"name":"Division of Pediatric Hematology\/Oncology, Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luke D.","family":"Maese","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"},{"name":"Division of Pediatric Hematology\/Oncology, Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wendy K.","family":"Kohlmann","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara O.","family":"Henderson","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, University of Chicago, Chicago, Illinois"},{"name":"Division of Pediatric Hematology\/Oncology, Lurie Children\u2019s Hospital, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judy E.","family":"Garber","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Cancer Genetics and Prevention, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lisa R.","family":"Diller","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ami V.","family":"Desai","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, University of Chicago, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Soren","family":"Feola","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"},{"name":"Division of Pediatric Hematology\/Oncology, Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dejoix-Leigh","family":"Johnson","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Disorders Center, Children\u2019s Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefania Marron","family":"Rodriguez","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, University of Chicago, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennie","family":"Vagher","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"},{"name":"Division of Pediatric Hematology\/Oncology, Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Casey J.","family":"Mehrhoff","sequence":"additional","affiliation":[{"name":"Huntsman Cancer Institute, University of Utah, Salt Lake City"},{"name":"Division of Pediatric Hematology\/Oncology, Primary Children\u2019s Hospital, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Savage","sequence":"additional","affiliation":[{"name":"Division of Genetic and Genomic Medicine, Nationwide Children\u2019s Hospital, Columbus, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer","family":"Perry","sequence":"additional","affiliation":[{"name":"Li-Fraumeni Syndrome Association, Holliston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Madi","family":"Glorioso","sequence":"additional","affiliation":[{"name":"Labcorp Genetics, San Francisco, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicolas","family":"Moyer","sequence":"additional","affiliation":[{"name":"Division of Pediatric Hematology\/Oncology, Lurie Children\u2019s Hospital, Chicago, Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James L.","family":"Klosky","sequence":"additional","affiliation":[{"name":"Aflac Cancer and Blood Disorders Center, Children\u2019s Healthcare of Atlanta and Department of Pediatrics, Emory University School of Medicine, Atlanta, Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Huma Q.","family":"Rana","sequence":"additional","affiliation":[{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Cancer Genetics and Prevention, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer W.","family":"Mack","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"},{"name":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"10","published-online":{"date-parts":[[2026,10,7]]},"reference":[{"issue":"24","key":"zoi260966r1","doi-asserted-by":"crossref","first-page":"2336","DOI":"10.1056\/NEJMoa1508054","article-title":"Germline Mutations in predisposition genes in pediatric cancer.","volume":"373","author":"Zhang","year":"2015","journal-title":"N Engl J Med"},{"issue":"1","key":"zoi260966r2","doi-asserted-by":"crossref","first-page":"353","DOI":"10.1007\/s10549-012-2021-9","article-title":"Prevalence of BRCA1 mutations among 403 women with triple-negative breast cancer: implications for genetic screening selection criteria: a Hellenic Cooperative Oncology Group Study.","volume":"134","author":"Fostira","year":"2012","journal-title":"Breast Cancer Res Treat"},{"key":"zoi260966r3","doi-asserted-by":"crossref","first-page":"86","DOI":"10.1186\/1471-2407-9-86","article-title":"The prevalence of BRCA1 mutations among young women with triple-negative breast cancer.","volume":"9","author":"Young","year":"2009","journal-title":"BMC Cancer"},{"issue":"8","key":"zoi260966r4","doi-asserted-by":"crossref","first-page":"1146","DOI":"10.1136\/gut.2005.066092","article-title":"Family history and molecular features of children, adolescents, and young adults with colorectal carcinoma.","volume":"54","author":"Durno","year":"2005","journal-title":"Gut"},{"issue":"5","key":"zoi260966r5","doi-asserted-by":"crossref","first-page":"470","DOI":"10.1002\/(SICI)1096-911X(199911)33:5<470::AID-MPO6>3.0.CO;2-A","article-title":"Family history of cancer in children and young adults with colorectal cancer.","volume":"33","author":"Bhatia","year":"1999","journal-title":"Med Pediatr Oncol"},{"issue":"10","key":"zoi260966r6","doi-asserted-by":"crossref","first-page":"1485","DOI":"10.1002\/bjs.1800811029","article-title":"Genetic susceptibility to colorectal cancer in patients under 45 years of age.","volume":"81","author":"Hall","year":"1994","journal-title":"Br J Surg"},{"issue":"11","key":"zoi260966r7","doi-asserted-by":"crossref","first-page":"e38","DOI":"10.1158\/1078-0432.CCR-17-0408","article-title":"Cancer Screening recommendations for individuals with Li-Fraumeni syndrome.","volume":"23","author":"Kratz","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"4","key":"zoi260966r8","doi-asserted-by":"crossref","first-page":"747","DOI":"10.7326\/0003-4819-71-4-747","article-title":"Soft-tissue sarcomas, breast cancer, and other neoplasms: a familial syndrome?","volume":"71","author":"Li","year":"1969","journal-title":"Ann Intern Med"},{"issue":"11","key":"zoi260966r9","doi-asserted-by":"crossref","first-page":"e6","DOI":"10.1158\/1078-0432.CCR-17-0515","article-title":"Pediatric cancer predisposition imaging: focus on whole-body MRI.","volume":"23","author":"Greer","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"13","key":"zoi260966r10","doi-asserted-by":"crossref","first-page":"e115","DOI":"10.1158\/1078-0432.CCR-17-0710","article-title":"Surveillance recommendations for children with overgrowth syndromes and predisposition to Wilms tumors and hepatoblastoma.","volume":"23","author":"Kalish","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"1","key":"zoi260966r11","doi-asserted-by":"crossref","first-page":"41","DOI":"10.1097\/MOP.0000000000000709","article-title":"Updates on progress in cancer screening for children with hereditary cancer predisposition syndromes.","volume":"31","author":"Rednam","year":"2019","journal-title":"Curr Opin Pediatr"},{"issue":"10","key":"zoi260966r12","doi-asserted-by":"crossref","first-page":"2251","DOI":"10.1158\/1078-0432.CCR-17-3089","article-title":"DICER1 and associated conditions: identification of at-risk individuals and recommended surveillance strategies.","volume":"24","author":"Schultz","year":"2018","journal-title":"Clin Cancer Res"},{"issue":"13","key":"zoi260966r13","doi-asserted-by":"crossref","first-page":"e98","DOI":"10.1158\/1078-0432.CCR-17-0652","article-title":"Retinoblastoma and neuroblastoma predisposition and surveillance.","volume":"23","author":"Kamihara","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"12","key":"zoi260966r14","doi-asserted-by":"crossref","first-page":"e76","DOI":"10.1158\/1078-0432.CCR-17-0629","article-title":"PTEN, DICER1, FH, and their associated tumor susceptibility syndromes: clinical features, genetics, and surveillance recommendations in childhood.","volume":"23","author":"Schultz","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"12","key":"zoi260966r15","doi-asserted-by":"crossref","first-page":"e68","DOI":"10.1158\/1078-0432.CCR-17-0547","article-title":"Von Hippel-Lindau and hereditary pheochromocytoma\/paraganglioma syndromes: clinical features, genetics, and surveillance recommendations in childhood.","volume":"23","author":"Rednam","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"12","key":"zoi260966r16","doi-asserted-by":"crossref","first-page":"e62","DOI":"10.1158\/1078-0432.CCR-17-0595","article-title":"Cancer surveillance in Gorlin syndrome and rhabdoid tumor predisposition syndrome.","volume":"23","author":"Foulkes","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"13","key":"zoi260966r17","doi-asserted-by":"crossref","first-page":"e123","DOI":"10.1158\/1078-0432.CCR-17-0548","article-title":"Multiple endocrine neoplasia and hyperparathyroid-jaw tumor syndromes: clinical features, genetics, and surveillance recommendations in childhood.","volume":"23","author":"Wasserman","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"2","key":"zoi260966r18","article-title":"Screening with whole-body magnetic resonance imaging in pediatric subjects with Li-Fraumeni syndrome: a single institution pilot study.","volume":"65","author":"O\u2019Neill","year":"2018","journal-title":"Pediatr Blood Cancer"},{"issue":"1","key":"zoi260966r23","doi-asserted-by":"crossref","first-page":"70","DOI":"10.1038\/gim.2014.147","article-title":"A practice guideline from the American College of Medical Genetics and Genomics and the National Society of Genetic Counselors: referral indications for cancer predisposition assessment.","volume":"17","author":"Hampel","year":"2015","journal-title":"Genet Med"},{"issue":"18","key":"zoi260966r24","doi-asserted-by":"crossref","first-page":"3008","DOI":"10.1200\/JCO.2009.27.2112","article-title":"Genetic testing in Li-Fraumeni syndrome: uptake and psychosocial consequences.","volume":"28","author":"Lammens","year":"2010","journal-title":"J Clin Oncol"},{"issue":"3","key":"zoi260966r25","doi-asserted-by":"crossref","first-page":"529","DOI":"10.1007\/s10897-015-9905-x","article-title":"Easing the burden: describing the role of social, emotional and spiritual support in research families with Li-Fraumeni Syndrome.","volume":"25","author":"Peters","year":"2016","journal-title":"J Genet Couns"},{"issue":"8","key":"zoi260966r26","doi-asserted-by":"crossref","first-page":"755","DOI":"10.1038\/gim.2015.181","article-title":"The psychological impact of genetic information on children: a systematic review.","volume":"18","author":"Wakefield","year":"2016","journal-title":"Genet Med"},{"issue":"9","key":"zoi260966r27","doi-asserted-by":"crossref","first-page":"2024","DOI":"10.1002\/pon.3257","article-title":"Young adult daughters of BRCA1\/2 positive mothers: what do they know about hereditary cancer and how much do they worry?","volume":"22","author":"Patenaude","year":"2013","journal-title":"Psychooncology"},{"issue":"6","key":"zoi260966r28","doi-asserted-by":"crossref","first-page":"1179","DOI":"10.1007\/s10897-017-0125-4","article-title":"Family communication, risk perception and cancer knowledge of young adults from BRCA1\/2 families: a systematic review.","volume":"26","author":"Young","year":"2017","journal-title":"J Genet Couns"},{"issue":"11","key":"zoi260966r30","doi-asserted-by":"crossref","first-page":"1221","DOI":"10.1200\/JCO.2011.39.5467","article-title":"Psychosocial care of adolescent and young adult patients with cancer and survivors.","volume":"30","author":"Zebrack","year":"2012","journal-title":"J Clin Oncol"},{"issue":"1","key":"zoi260966r31","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1002\/cncr.27713","article-title":"Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients.","volume":"119","author":"Zebrack","year":"2013","journal-title":"Cancer"},{"issue":"1","key":"zoi260966r32","doi-asserted-by":"crossref","first-page":"11","DOI":"10.1007\/s10689-025-00525-0","article-title":"Development and pilot testing of AYA-RISE, a risk information and screening education intervention for adolescents and young adults with cancer risk syndromes.","volume":"25","author":"Kamihara","year":"2026","journal-title":"Fam Cancer"},{"issue":"13","key":"zoi260966r33","doi-asserted-by":"crossref","first-page":"e107","DOI":"10.1158\/1078-0432.CCR-17-0790","article-title":"Cancer screening recommendations and clinical management of inherited gastrointestinal cancer syndromes in childhood.","volume":"23","author":"Achatz","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"12","key":"zoi260966r34","doi-asserted-by":"crossref","first-page":"e46","DOI":"10.1158\/1078-0432.CCR-17-0589","article-title":"Cancer and central nervous system tumor surveillance in pediatric neurofibromatosis 1.","volume":"23","author":"Evans","year":"2017","journal-title":"Clin Cancer Res"},{"issue":"10","key":"zoi260966r35","first-page":"1122","article-title":"NCCN Guidelines Insights: genetic\/familial high-risk assessment: colorectal, version 1.","volume":"19","author":"Weiss","year":"2021","journal-title":"J Natl Compr Canc Netw"},{"issue":"7","key":"zoi260966r36","doi-asserted-by":"crossref","first-page":"1887","DOI":"10.1007\/s11136-017-1524-6","article-title":"Psychometric evaluation of the pediatric and parent-proxy Patient-Reported Outcomes Measurement Information System and the Neurology and Traumatic Brain Injury Quality of Life measurement item banks in pediatric traumatic brain injury.","volume":"26","author":"Bertisch","year":"2017","journal-title":"Qual Life Res"},{"issue":"23","key":"zoi260966r37","doi-asserted-by":"crossref","first-page":"1860","DOI":"10.1212\/WNL.0b013e318258f744","article-title":"Neuro-QOL: brief measures of health-related quality of life for clinical research in neurology.","volume":"78","author":"Cella","year":"2012","journal-title":"Neurology"},{"issue":"1","key":"zoi260966r39","doi-asserted-by":"crossref","first-page":"46","DOI":"10.1177\/0272989X14535983","article-title":"Efficacy of a web-based intelligent tutoring system for communicating genetic risk of breast cancer: a fuzzy-trace theory approach.","volume":"35","author":"Wolfe","year":"2015","journal-title":"Med Decis Making"},{"issue":"18","key":"zoi260966r40","doi-asserted-by":"crossref","first-page":"1861","DOI":"10.1200\/JCO.2018.78.2128","article-title":"Communication about prognosis with adolescent and young adult patients with cancer: information needs, prognostic awareness, and outcomes of disclosure.","volume":"36","author":"Mack","year":"2018","journal-title":"J Clin Oncol"},{"issue":"12","key":"zoi260966r41","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2016-013833","article-title":"Cancer risk awareness and screening uptake in individuals at higher risk for colon cancer: a cross-sectional study.","volume":"6","author":"Salimzadeh","year":"2016","journal-title":"BMJ Open"},{"issue":"8","key":"zoi260966r42","doi-asserted-by":"crossref","first-page":"862","DOI":"10.1002\/pon.3485","article-title":"Psychosocial aspects of hereditary cancer (PAHC) questionnaire: development and testing of a screening questionnaire for use in clinical cancer genetics.","volume":"23","author":"Eijzenga","year":"2014","journal-title":"Psychooncology"},{"issue":"3","key":"zoi260966r43","doi-asserted-by":"crossref","first-page":"241","DOI":"10.1002\/pon.3430","article-title":"Validation of the distress thermometer worldwide: state of the science.","volume":"23","author":"Donovan","year":"2014","journal-title":"Psychooncology"},{"issue":"8","key":"zoi260966r44","doi-asserted-by":"crossref","first-page":"727","DOI":"10.1080\/10410236.2011.616627","article-title":"Social cognitive factors and perceived social influences that improve adolescent eHealth literacy.","volume":"27","author":"Paek","year":"2012","journal-title":"Health Commun"},{"issue":"1","key":"zoi260966r45","doi-asserted-by":"crossref","first-page":"1","DOI":"10.18637\/jss.v095.i01","article-title":"Various versatile variances: an object-oriented implementation of clustered covariances in R.","volume":"95","author":"Zeileis","year":"2020","journal-title":"J Stat Softw"},{"issue":"8","key":"zoi260966r46","doi-asserted-by":"crossref","first-page":"783","DOI":"10.1002\/pon.1352","article-title":"Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome.","volume":"17","author":"Peterson","year":"2008","journal-title":"Psychooncology"},{"issue":"6","key":"zoi260966r47","doi-asserted-by":"crossref","first-page":"631","DOI":"10.1002\/pon.1951","article-title":"Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes.","volume":"20","author":"Lammens","year":"2011","journal-title":"Psychooncology"},{"issue":"4","key":"zoi260966r48","doi-asserted-by":"crossref","first-page":"647","DOI":"10.1007\/s10689-010-9368-z","article-title":"Regular surveillance for Li-Fraumeni Syndrome: advice, adherence and perceived benefits.","volume":"9","author":"Lammens","year":"2010","journal-title":"Fam Cancer"},{"issue":"2","key":"zoi260966r49","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1007\/s10897-011-9462-x","article-title":"Essential elements of genetic cancer risk assessment, counseling, and testing: updated recommendations of the National Society of Genetic Counselors.","volume":"21","author":"Riley","year":"2012","journal-title":"J Genet Couns"},{"issue":"4","key":"zoi260966r50","doi-asserted-by":"crossref","first-page":"629","DOI":"10.1007\/s10689-015-9809-9","article-title":"Prevalence and detection of psychosocial problems in cancer genetic counseling.","volume":"14","author":"Eijzenga","year":"2015","journal-title":"Fam Cancer"},{"issue":"1","key":"zoi260966r51","doi-asserted-by":"crossref","first-page":"56","DOI":"10.1002\/ajmg.c.30161","article-title":"Living with genetic risk: effect on adolescent self-concept.","volume":"148C","author":"McConkie-Rosell","year":"2008","journal-title":"Am J Med Genet C Semin Med Genet"},{"issue":"1","key":"zoi260966r52","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1111\/cge.13253","article-title":"Children and young people\u2019s understanding of inherited conditions and their attitudes towards genetic testing: a systematic review.","volume":"95","author":"McGill","year":"2019","journal-title":"Clin Genet"},{"issue":"2","key":"zoi260966r53","doi-asserted-by":"crossref","DOI":"10.1371\/journal.pone.0087696","article-title":"In their own words: treating very young BRCA1\/2 mutation-positive women with care and caution.","volume":"9","author":"Hoskins","year":"2014","journal-title":"PLoS One"},{"issue":"3","key":"zoi260966r54","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1111\/j.1545-5300.2007.00215.x","article-title":"Danger zones: risk perceptions of young women from families with hereditary breast and ovarian cancer.","volume":"46","author":"Werner-Lin","year":"2007","journal-title":"Fam Process"},{"issue":"2","key":"zoi260966r55","doi-asserted-by":"crossref","first-page":"200","DOI":"10.1002\/pon.1384","article-title":"Learning of your parent\u2019s BRCA mutation during adolescence or early adulthood: a study of offspring experiences.","volume":"18","author":"Bradbury","year":"2009","journal-title":"Psychooncology"},{"issue":"1","key":"zoi260966r56","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1002\/jgc4.1314","article-title":"Whether, when, and how to communicate genetic risk to minors: \u201cI wanted more information but I think they were scared I couldn\u2019t handle it.\u201d","volume":"30","author":"Stuttgen","year":"2021","journal-title":"J Genet Couns"},{"issue":"1","key":"zoi260966r57","doi-asserted-by":"crossref","first-page":"205","DOI":"10.1186\/s12874-020-01088-7","article-title":"Factors affecting adolescents\u2019 participation in randomized controlled trials evaluating the effectiveness of healthcare interventions: the case of the STEPSTONES project.","volume":"20","author":"Saarij\u00e4rvi","year":"2020","journal-title":"BMC Med Res Methodol"},{"key":"zoi260966r58","doi-asserted-by":"crossref","first-page":"141","DOI":"10.1186\/1745-6215-12-141","article-title":"Comparison of early-, late-, and non-participants in a school-based asthma management program for urban high school students.","volume":"12","author":"Joseph","year":"2011","journal-title":"Trials"},{"key":"zoi260966r59","doi-asserted-by":"crossref","first-page":"824","DOI":"10.1186\/1756-0500-7-824","article-title":"What can we learn from a failed trial: insight into non-participation in a chat-based intervention trial for adolescents with psychosocial problems.","volume":"7","author":"Crutzen","year":"2014","journal-title":"BMC Res Notes"},{"issue":"6","key":"zoi260966r60","doi-asserted-by":"crossref","first-page":"849","DOI":"10.1016\/j.amepre.2016.11.028","article-title":"Recruitment, enrollment, and response of parent-adolescent dyads in the FLASHE study.","volume":"52","author":"Oh","year":"2017","journal-title":"Am J Prev Med"},{"issue":"6","key":"zoi260966r61","doi-asserted-by":"crossref","first-page":"434","DOI":"10.1016\/j.pedhc.2012.04.010","article-title":"Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer.","volume":"27","author":"Hendricks-Ferguson","year":"2013","journal-title":"J Pediatr Health Care"},{"key":"zoi260966r62","doi-asserted-by":"crossref","first-page":"116","DOI":"10.1016\/j.jclinepi.2017.08.003","article-title":"A randomized trial found online questionnaires supplemented by postal reminders generated a cost-effective and generalizable sample but don\u2019t forget the reminders.","volume":"92","author":"Loban","year":"2017","journal-title":"J Clin Epidemiol"},{"key":"zoi260966r29","volume-title":"Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer","author":"The Adolescent and Young Adult Oncology Progress Review Group","year":"2006"},{"key":"zoi260966r38","volume-title":"Modern Applied Statistics with S","author":"Venables","year":"2003"},{"key":"zoi260966r19","unstructured":"National Comprehensive Cancer Network. Practice guidelines in oncology: adolescent and young adult oncology. Accessed August 17, 2026. https:\/\/www.nccn.org\/professionals\/physician_gls\/pdf\/aya.pdf"},{"key":"zoi260966r20","unstructured":"National Comprehensive Cancer Network. Practice Guidelines in Oncology\u2014genetic\/familial high risk assessment: Breast and ovarian. Accessed August 17, 2026. https:\/\/www.nccn.org\/professionals\/physician_gls\/pdf\/genetics_bopp.pdf"},{"key":"zoi260966r21","unstructured":"National Comprehensive Cancer Network. Practice Guidelines\u2014genetic\/familial high risk assessment: colorectal cancer. Accessed August 17, 2026. https:\/\/www.nccn.org\/professionals\/physician_gls\/pdf\/genetics_ceeg.pdf"},{"key":"zoi260966r22","unstructured":"National Comprehensive Cancer Network. Practice Guidelines\u2014soft tissue sarcoma. Accessed August 17, 2026. https:\/\/www.nccn.org\/professionals\/physician_gls\/pdf\/sarcoma.pdf"}],"container-title":["JAMA Network Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/articlepdf\/2854932\/kamihara_2026_oi_260966_1790787576.58837.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,7]],"date-time":"2026-10-07T15:00:43Z","timestamp":1791385243000},"score":1,"resource":{"primary":{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2854932"}},"subtitle":["A Randomized Clinical Trial"],"short-title":[],"issued":{"date-parts":[[2026,10,7]]},"references-count":62,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2026,10,1]]}},"URL":"https:\/\/doi.org\/10.1001\/jamanetworkopen.2026.35794","relation":{},"ISSN":["2574-3805"],"issn-type":[{"value":"2574-3805","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,7]]}}}