{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T03:55:25Z","timestamp":1776311725586,"version":"3.50.1"},"reference-count":60,"publisher":"Elsevier BV","issue":"6","license":[{"start":{"date-parts":[[2011,12,1]],"date-time":"2011-12-01T00:00:00Z","timestamp":1322697600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["American Journal of Preventive Medicine"],"published-print":{"date-parts":[[2011,12]]},"DOI":"10.1016\/j.amepre.2011.09.002","type":"journal-article","created":{"date-parts":[[2011,11,17]],"date-time":"2011-11-17T17:57:51Z","timestamp":1321552671000},"page":"S338-S345","source":"Crossref","is-referenced-by-count":24,"special_numbering":"S4","title":["Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia"],"prefix":"10.1016","volume":"41","author":[{"given":"Judith R.","family":"Baker","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Brenda","family":"Riske","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mariam","family":"Voutsis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan","family":"Cutter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rodney","family":"Presley","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib1","first-page":"416","article-title":"Behavioral techniques in teaching hemophilia factor replacement procedures to families","volume":"8","author":"Sergis-Deavenport","year":"1982","journal-title":"Pediatr Nurs"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib2","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1046\/j.1365-2516.2003.00853.x","article-title":"Home management of haemophilia","volume":"10","author":"Teitel","year":"2004","journal-title":"Haemophilia"},{"issue":"16","key":"10.1016\/j.amepre.2011.09.002_bib3","doi-asserted-by":"crossref","first-page":"987","DOI":"10.12968\/bjon.2007.16.16.27077","article-title":"Haemophilia A: meeting the needs of individual patients","volume":"16","author":"Khair","year":"2007","journal-title":"Br J Nurs"},{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib4","doi-asserted-by":"crossref","first-page":"535","DOI":"10.1056\/NEJMoa067659","article-title":"Prophylaxis versus episodic treatment to prevent joint disease in boys with severe hemophilia","volume":"357","author":"Manco-Johnson","year":"2007","journal-title":"N Engl J Med"},{"issue":"S31","key":"10.1016\/j.amepre.2011.09.002_bib5","doi-asserted-by":"crossref","first-page":"5","DOI":"10.1111\/j.1600-0609.1977.tb01536.x","article-title":"Recommendations on home treatment of hemophilias","volume":"19","author":"Allain","year":"1977","journal-title":"Scand J Haematol"},{"issue":"19","key":"10.1016\/j.amepre.2011.09.002_bib6","doi-asserted-by":"crossref","first-page":"1011","DOI":"10.1056\/NEJM197011052831902","article-title":"Home transfusion for patients with hemophilia A","volume":"283","author":"Rabiner","year":"1970","journal-title":"N Engl J Med"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib7","doi-asserted-by":"crossref","first-page":"195","DOI":"10.7326\/0003-4819-78-2-195","article-title":"Supervised patient-management of hemophilia","volume":"78","author":"Levine","year":"1973","journal-title":"Ann Intern Med"},{"issue":"5","key":"10.1016\/j.amepre.2011.09.002_bib8","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1097\/00007611-197405000-00015","article-title":"Medical, economic, and social impact of a home therapy program for hemophilia A on selected patients","volume":"67","author":"McKenzie","year":"1974","journal-title":"South Med J"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib9","doi-asserted-by":"crossref","first-page":"21","DOI":"10.5694\/j.1326-5377.1981.tb132049.x","article-title":"Home treatment of haemophilia: a follow-up study","volume":"2","author":"Ekert","year":"1981","journal-title":"Med J Aust"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib10","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1111\/j.1365-2141.1977.tb08811.x","article-title":"Home treatment of haemophilia and Christmas disease: five years' experience","volume":"37","author":"Rizza","year":"1977","journal-title":"Br J Haematol"},{"issue":"3","key":"10.1016\/j.amepre.2011.09.002_bib11","first-page":"438","article-title":"Psychosocial aspects of hemophilia: problems, prevention, treatment modalities, research, and future directions","volume":"44","author":"Wincott","year":"1977","journal-title":"Mt Sinai J Med"},{"issue":"8","key":"10.1016\/j.amepre.2011.09.002_bib12","doi-asserted-by":"crossref","first-page":"885","DOI":"10.1001\/jama.1972.03200210029007","article-title":"Home transfusions of hemophiliacs","volume":"221","author":"Rabiner","year":"1972","journal-title":"JAMA"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib13","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1111\/j.1365-2257.1979.tb00586.x","article-title":"Home treatment in haemophilia: clinical, social and economic advantages","volume":"1","author":"Ingram","year":"1979","journal-title":"Clin Lab Haemat"},{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib14","doi-asserted-by":"crossref","first-page":"616","DOI":"10.2105\/AJPH.74.6.616","article-title":"The benefits of comprehensive care of hemophilia: a five-year study of outcomes","volume":"74","author":"Smith","year":"1984","journal-title":"Am J Public Health"},{"issue":"4","key":"10.1016\/j.amepre.2011.09.002_bib15","doi-asserted-by":"crossref","first-page":"498","DOI":"10.1046\/j.1365-2516.1998.440498.x","article-title":"Resource utilisation in haemophiliacs treated in Europe: results from the European study on socioeconomic aspects of haemophilia care","volume":"4","author":"Szucs","year":"1998","journal-title":"Haemophilia"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib16","first-page":"437","article-title":"Mortality among males with hemophilia: relations with source of medical care","volume":"96","author":"Soucie","year":"2000","journal-title":"Blood"},{"issue":"11","key":"10.1016\/j.amepre.2011.09.002_bib17","doi-asserted-by":"crossref","first-page":"823","DOI":"10.7326\/0003-4819-123-11-199512010-00002","article-title":"Mortality in patients with hemophilia","volume":"123","author":"Triemstra","year":"1995","journal-title":"Ann Intern Med"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib18","doi-asserted-by":"crossref","first-page":"198","DOI":"10.1046\/j.1365-2516.2001.00484.x","article-title":"Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia","volume":"7","author":"Soucie","year":"2001","journal-title":"Haemophilia"},{"issue":"3S2","key":"10.1016\/j.amepre.2011.09.002_bib19","first-page":"S3","article-title":"Prophylaxis: musculoskeletal evaluation","volume":"30","author":"Gilbert","year":"1993","journal-title":"Semin Hematol"},{"issue":"3S2","key":"10.1016\/j.amepre.2011.09.002_bib20","first-page":"S7","article-title":"Radiographic scores and implications","volume":"30","author":"Pettersson","year":"1993","journal-title":"Semin Hematol"},{"issue":"3S2","key":"10.1016\/j.amepre.2011.09.002_bib21","first-page":"S16","article-title":"Experience with prophylaxis in Sweden","volume":"30","author":"Nilsson","year":"1993","journal-title":"Semin Hematol"},{"issue":"S4","key":"10.1016\/j.amepre.2011.09.002_bib22","doi-asserted-by":"crossref","first-page":"S71","DOI":"10.1097\/00001721-199412004-00019","article-title":"Is haemophilia prophylaxis achievable in the context of self-sufficiency?","volume":"5","author":"Nilsson","year":"1994","journal-title":"Blood Coagul Fibrin"},{"issue":"4","key":"10.1016\/j.amepre.2011.09.002_bib23","doi-asserted-by":"crossref","first-page":"391","DOI":"10.1111\/j.1365-2796.1994.tb00815.x","article-title":"A longitudinal study of orthopaedic outcomes for severe factor-VIII-deficient haemophiliacs: the Orthopaedic Outcome Study Group","volume":"236","author":"Aledort","year":"1994","journal-title":"J Intern Med"},{"issue":"5","key":"10.1016\/j.amepre.2011.09.002_bib24","doi-asserted-by":"crossref","first-page":"932","DOI":"10.1055\/s-0037-1615097","article-title":"Prophylactic use of factor VIII: an economic evaluation","volume":"79","author":"Bohn","year":"1998","journal-title":"Thromb Haemost"},{"issue":"4","key":"10.1016\/j.amepre.2011.09.002_bib25","doi-asserted-by":"crossref","first-page":"493","DOI":"10.1046\/j.1365-2796.2000.00633.x","article-title":"Primary prophylaxis for individuals with severe haemophilia: how many hospital visits could treatment prevent?","volume":"247","author":"Miners","year":"2000","journal-title":"J Intern Med"},{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib26","doi-asserted-by":"crossref","first-page":"515","DOI":"10.1111\/j.1365-2796.1998.00396.x","article-title":"Assessing the effectiveness and cost-effectiveness of prophylaxis against bleeding in patients with severe haemophilia and severe von Willebrand's disease","volume":"244","author":"Miners","year":"1998","journal-title":"J Intern Med"},{"key":"10.1016\/j.amepre.2011.09.002_bib27","doi-asserted-by":"crossref","first-page":"74","DOI":"10.1111\/j.1365-2516.2006.01370.x","article-title":"Assessing the costs for clinical care of patients with high-responding factor VIII and IX inhibitors","volume":"12","author":"Ullman","year":"2006","journal-title":"Haemophilia"},{"issue":"3","key":"10.1016\/j.amepre.2011.09.002_bib28","doi-asserted-by":"crossref","first-page":"325","DOI":"10.1046\/j.1365-2516.2003.00752.x","article-title":"The Hemophilia Utilization Group Study (HUGS): determinants of costs of care in persons with haemophilia A","volume":"9","author":"Globe","year":"2003","journal-title":"Haemophilia"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib29","first-page":"87","article-title":"The Hemophilia Utilization Group Study: cost of outpatient, inpatient and pharmaceutical care","volume":"7","author":"Globe","year":"2001","journal-title":"Int J Pediatr Hematol Oncol"},{"issue":"S1","key":"10.1016\/j.amepre.2011.09.002_bib30","doi-asserted-by":"crossref","first-page":"S63","DOI":"10.1111\/j.1355-0691.2004.00881.x","article-title":"Utilization of care in haemophilia: a resource-based method for cost analysis from the Haemophilia Utilization Group Study (HUGS)","volume":"10","author":"Globe","year":"2004","journal-title":"Haemophilia"},{"issue":"9","key":"10.1016\/j.amepre.2011.09.002_bib31","doi-asserted-by":"crossref","first-page":"790","DOI":"10.18553\/jmcp.2007.13.9.790","article-title":"Medical costs and resource utilization for hemophilia patients with and without HIV or HCV infection","volume":"13","author":"Tencer","year":"2007","journal-title":"J Manag Care Pharm"},{"issue":"3","key":"10.1016\/j.amepre.2011.09.002_bib32","doi-asserted-by":"crossref","first-page":"424","DOI":"10.1016\/S0022-3476(96)70076-8","article-title":"Episodic versus prophylactic infusions for hemophilia A: a cost-effectiveness analysis","volume":"129","author":"Smith","year":"1996","journal-title":"J Pediatr"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib33","doi-asserted-by":"crossref","first-page":"407","DOI":"10.1542\/peds.2007-2875","article-title":"Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders","volume":"123","author":"Grosse","year":"2009","journal-title":"Pediatr"},{"issue":"11","key":"10.1016\/j.amepre.2011.09.002_bib34","doi-asserted-by":"crossref","first-page":"1910","DOI":"10.2105\/AJPH.2004.051318","article-title":"A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders","volume":"95","author":"Baker","year":"2005","journal-title":"Am J Public Health"},{"issue":"5","key":"10.1016\/j.amepre.2011.09.002_bib35","first-page":"395","article-title":"Comprehensive care for hemophilia and related inherited bleeding disorders: why it matters","volume":"2","author":"Hoots","year":"2003","journal-title":"Curr Hematol Rep"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib36","doi-asserted-by":"crossref","first-page":"137","DOI":"10.1542\/peds.102.1.137","article-title":"A new definition of children with special health care needs","volume":"102","author":"McPherson","year":"1998","journal-title":"Pediatrics"},{"issue":"5","key":"10.1016\/j.amepre.2011.09.002_bib37","doi-asserted-by":"crossref","first-page":"1162","DOI":"10.1542\/peds.2004-2432","article-title":"Association between underinsurance and access to care among children with special health care needs in the United States","volume":"116","author":"Kogan","year":"2005","journal-title":"Pediatrics"},{"issue":"9","key":"10.1016\/j.amepre.2011.09.002_bib38","doi-asserted-by":"crossref","first-page":"884","DOI":"10.1001\/archpedi.158.9.884","article-title":"Prevalence and characteristics of children with special health care needs","volume":"158","author":"van Dyck","year":"2004","journal-title":"Arch Pediatr Adolesc Med"},{"issue":"4 Pt 1","key":"10.1016\/j.amepre.2011.09.002_bib39","doi-asserted-by":"crossref","first-page":"760","DOI":"10.1542\/peds.105.4.760","article-title":"Access to health care for children with special health care needs","volume":"105","author":"Newacheck","year":"2000","journal-title":"Pediatrics"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib40","doi-asserted-by":"crossref","first-page":"394","DOI":"10.1542\/peds.114.2.394","article-title":"Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance","volume":"114","author":"Davidoff","year":"2004","journal-title":"Pediatrics"},{"key":"10.1016\/j.amepre.2011.09.002_bib41","doi-asserted-by":"crossref","first-page":"194","DOI":"10.1186\/1472-6963-7-194","article-title":"Effects of insurance status on children's access to specialty care: a systematic review of the literature","volume":"7","author":"Skinner","year":"2007","journal-title":"BMC Health Serv Res"},{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib42","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1016\/j.ambp.2007.08.001","article-title":"Unmet mental health need and access to services for children with special health care needs and their families","volume":"7","author":"Inkelas","year":"2007","journal-title":"Amb Pediatr"},{"issue":"5","key":"10.1016\/j.amepre.2011.09.002_bib43","doi-asserted-by":"crossref","first-page":"305","DOI":"10.1016\/j.ambp.2008.04.003","article-title":"Preventive care utilization among children with and without special health care needs: associations with unmet need","volume":"8","author":"Van Cleave","year":"2008","journal-title":"Amb Pediatr"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib44","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1016\/j.acap.2010.12.014","article-title":"Evidence for family-centered care for children with special health care needs: a systematic review","volume":"11","author":"Kuhlthau","year":"2011","journal-title":"Acad Pediatr"},{"issue":"2","key":"10.1016\/j.amepre.2011.09.002_bib45","doi-asserted-by":"crossref","first-page":"224","DOI":"10.2105\/AJPH.2009.177915","article-title":"Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach","volume":"101","author":"Strickland","year":"2011","journal-title":"Am J Public Health"},{"issue":"4","key":"10.1016\/j.amepre.2011.09.002_bib46","doi-asserted-by":"crossref","first-page":"247","DOI":"10.1367\/1539-4409(2002)002<0247:RAEDIA>2.0.CO;2","article-title":"Racial and ethnic disparities in access to care for children with special health care needs","volume":"2","author":"Newacheck","year":"2002","journal-title":"Ambul Pediatr"},{"issue":"16","key":"10.1016\/j.amepre.2011.09.002_bib47","doi-asserted-by":"crossref","first-page":"1618","DOI":"10.1056\/NEJMoa075760","article-title":"Inhibitors of factor VIII in black patients with hemophilia","volume":"360","author":"Viel","year":"2009","journal-title":"N Engl J Med"},{"issue":"1","key":"10.1016\/j.amepre.2011.09.002_bib48","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1046\/j.1365-2516.1998.0146c.x","article-title":"Inhibitors occur more frequently in African-American and Latino haemophiliacs","volume":"4","author":"Aledort","year":"1998","journal-title":"Haemophilia"},{"issue":"7","key":"10.1016\/j.amepre.2011.09.002_bib49","doi-asserted-by":"crossref","first-page":"2467","DOI":"10.1182\/blood-2003-05-1457","article-title":"Joint range-of-motion limitations among young males with hemophilia: prevalence and risk factors","volume":"103","author":"Soucie","year":"2004","journal-title":"Blood"},{"issue":"8","key":"10.1016\/j.amepre.2011.09.002_bib50","doi-asserted-by":"crossref","first-page":"1821","DOI":"10.1161\/01.STR.0000083049.65008.5F","article-title":"Ethnic differences in markers of thrombophilia: implications for the investigation of ischemic stroke in multiethnic populations: the South London Ethnicity and Stroke study","volume":"34","author":"Jerrard-Dunne","year":"2003","journal-title":"Stroke"},{"issue":"16","key":"10.1016\/j.amepre.2011.09.002_bib51","doi-asserted-by":"crossref","first-page":"1305","DOI":"10.1001\/jama.1997.03540400055031","article-title":"Ethnic distribution of factor V Leiden in 4047 men and women","volume":"277","author":"Ridker","year":"1997","journal-title":"JAMA"},{"issue":"6S4","key":"10.1016\/j.amepre.2011.09.002_bib52","doi-asserted-by":"crossref","first-page":"S360","DOI":"10.1016\/j.amepre.2011.09.017","article-title":"Physical functioning in boys with hemophilia in the U.S.","volume":"41","author":"Monahan","year":"2011","journal-title":"Am J Prev Med"},{"issue":"6S4","key":"10.1016\/j.amepre.2011.09.002_bib53","doi-asserted-by":"crossref","first-page":"S346","DOI":"10.1016\/j.amepre.2011.09.003","article-title":"Self-reported barriers to hemophilia care in people with factor VIII deficiency","volume":"41","author":"Zhou","year":"2011","journal-title":"Am J Prev Med"},{"issue":"4S","key":"10.1016\/j.amepre.2011.09.002_bib54","doi-asserted-by":"crossref","first-page":"S489","DOI":"10.1016\/j.amepre.2009.12.024","article-title":"High school completion rates among men with hemophilia","volume":"38","author":"Drake","year":"2010","journal-title":"Am J Prev Med"},{"issue":"51\u201352","key":"10.1016\/j.amepre.2011.09.002_bib55","first-page":"1152","article-title":"Blood safety monitoring among persons with bleeding disorders\u2014United States, May 1998\u2013June 2002","volume":"51","year":"2003","journal-title":"MMWR"},{"key":"10.1016\/j.amepre.2011.09.002_bib56","series-title":"Geographic variations in health insurance: a profile of Missouri","author":"Zuckerman","year":"2006"},{"key":"10.1016\/j.amepre.2011.09.002_bib57","series-title":"Early release of selected estimates based on data from the 2009 National Health Interview Survey","author":"Barnes","year":"2010"},{"issue":"4","key":"10.1016\/j.amepre.2011.09.002_bib58","doi-asserted-by":"crossref","first-page":"392","DOI":"10.1046\/j.1365-2516.2001.00534.x","article-title":"Barriers to compliance with prophylaxis therapy in haemophilia","volume":"7","author":"Hacker","year":"2001","journal-title":"Haemophilia"},{"issue":"6","key":"10.1016\/j.amepre.2011.09.002_bib59","doi-asserted-by":"crossref","first-page":"1112","DOI":"10.1097\/00004583-199211000-00020","article-title":"Prevalence and predictors of pervasive noncompliance with medical treatment among youths with insulin-dependent diabetes mellitus","volume":"31","author":"Kovacs","year":"1992","journal-title":"J Am Acad Child Adolesc Psychiatry"},{"issue":"9","key":"10.1016\/j.amepre.2011.09.002_bib60","doi-asserted-by":"crossref","first-page":"999","DOI":"10.1093\/jpepsy\/jsp032","article-title":"Validity and reliability of an adolescent and parent rating scale of type 1 diabetes adherence behaviors: the Self-Care Inventory (SCI)","volume":"34","author":"Lewin","year":"2009","journal-title":"J Pediatr Psychol"}],"container-title":["American Journal of Preventive Medicine"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S074937971100612X?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S074937971100612X?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2024,4,14]],"date-time":"2024-04-14T20:48:33Z","timestamp":1713127713000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S074937971100612X"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2011,12]]},"references-count":60,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2011,12]]}},"alternative-id":["S074937971100612X"],"URL":"https:\/\/doi.org\/10.1016\/j.amepre.2011.09.002","relation":{},"ISSN":["0749-3797"],"issn-type":[{"value":"0749-3797","type":"print"}],"subject":[],"published":{"date-parts":[[2011,12]]}}}