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Bibliography for Social Workers



In this section, you will find psychosocial and educational topics, including: Adoption, aging, alternative therapies, health reform, insurance and school issues.  Article topics are arranged alphabetically with hyperlinks.







  • "Actively Aging" Beamer - 2014-04-15 15:43 Hemaware     

  • "Managing Disease While Aging with Hemophilia" By Sarah Aldridge | 02.17.2010


Alternative Therapies and Supplements



Child Issues, Abuse and Neglect







  • Are Adolescents with Chronic Conditions Particularly at Risk for Bullying?” Arch Dis Child (2014). P. 95, 711-716. (Pittet, I., Berchtold, A., Akre, C., Michaud, P.A., & Suris, J.C.)
  • “Peer Victimization Among School-aged Children With Chronic Conditions”  Epidemiologic Reviews (2012) P. 34, 120-128 (Sentenac, M., Arnaud, C., Gavin, A., Molcho, M., Gabhainn, S.N., & Godeau, E)








  • "Ground Breaking Guidelines" Menaka Pai, BSc, MSc, MD, FRCPC | 10.26.2016




  • “Finding a Dentist Who Treats People with Bleeding Disorders,” NHF September 2011




  • "HERO Highlights" Global study unearths unmet psychosocial issues-By Nancy Mann Jackson | 01.30.2015 | en español
  • ER Know How: Planning and Preparation Take the Sting Out of Emergency Department Visits,” NHF Hemaware July/August 2006 p. 47














  • "What The Healthcare Reform Means To Hemophilia Patients" Healthcare reform will occur in stages. By David Linney | 09.23.2010 NHF Hemaware



  • Costs and Coverage of New Hepatitis C Drugs; NHF Hemaware Fall 2011 p. 13





  • “A Journey of the Heart” Gammage, L and Francis, D (2013)
  • Past, Present and Future of Hemophilia: a Narrative Review. Franchini M, Mannucci M (2012) Orphanet Journal of Rare Diseases 7: 24. 








  • Social Worker Perceptions and Observations Regarding Men’s Management of Hemophilia and Use of Community-Based SupportOxford Journals: Health & Social Work June 2015 V 40, Issue 3 p. 239-244




  • “Prevalence of Depression in Adults with Haemophlia,” Haemophilia (2012) p.1-7 (Iannone, M., Pennick, L., Tom, A., Cui, H., Gilbert, M., Weihs, K. & Stopeck, A.)
  • Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology 8: 455–480. Compas E, Jaser S, Dunn J, . (2012) 


  • HERO international advisory board psychosocial aspects of haemophilia: a systematic review of methodologies and findings. By: CASSIS, F. R. M. Y Publication Date: 2012 Journal: Haemophilia Volume: 18 Issue: 3 Page: e101 ISSN: 1351-8216Resource: Article DOI: 10.1111/j.1365-2516.2011. 02683.x



  • Complications of haemophilia in babies (first two years of life): a report from the Centers for Disease Control and Prevention Universal Data Collection System: R. Kulkarni, R. J. Presley, J. M. Lusher, A. D. Shapiro, J. C. Gill, M. Manco-Johnson, M. A. Koerper, T. C. Abshire, D. DiMichele,W. K. Hoots, P. Mathew, D. J. Nugent, S. Geraghty, B. L. Evatt, J. M. Soucie Haemophilia; Volumn 23 Issue 2 March 2017 Pages 207-214.



  • The Quality and Accuracy of Hemophilia Information on the Internet.                                                         Vicky R Breakey, Danial M Ignas, Avram E Denburg and Victor S. Blanchette; Blood 2009 114:244;


  • An approach to outreach patients with von Willebrand disease in Egypt by targeting women with heavy menstrual bleeding and/or bleeding symptoms: N. Sherif,,H. Goubran,,A. Hassan,T. Burnouf, M. El-Ekiaby; Haemophilia;Volumn 20, Issue 2, March 2014 , Pages 238- 248
  • von Willebrand disease Outreach into Integrated Care Education (VOICE): a call to action:    M. Wang, B. A. Konkle, R. F. Sidonio Jr,V. Flood,C. Koenig,R. Kulkarni. May 26 2017.










  • Challenges in transition to adulthood for young adult patients with hemophilia: Quantifying the psychosocial issues and developing solutions. Witkop, M., Guelcher, C., Forsyth, A., Quon, D., Hawk, S., Curtis, R., Cutter, S., Molter, D., and Cooper, D.L. (2015).  American Journal of Hematology,90(S2).Doi:10.1002/.24217
  • Physical and psychosocial challenges in adult hemophilia patients with inhibitors. duTreil, S. (2014).  Journal of Blood Medicine, 5: 115-122.


  • Hemophilia care in the pediatric age Bertamino, M., Riccardi, F., Banov, L., Svahn, J., and Molinari, A.C. (2017). Journal of Clinical Medicine, 6,54; doi:10.3390/jcm605005


  • Cognitive and psychological profiles in treatment compliance: A study in an elderly population with hemophilia. Riva, S., Nobili, A., Djade, C.D., Mancuso, M.E., Santagostino, E., and Pravettoni, G. (2015). Clinical Interventions in Aging, 10 1141-1146.  









  • Health-related quality of life in children and adolescents with hereditary bleeding disorders and in children and adlescents with stroke: Cross-sectional comparison to siblings and peers. Neuner, B., von Mackensen, S., Holzhauer, S., Funk, S., Klamroth, R., Kurnik, K., Krumpel, A., Halimeh, S., Reinke, S., Fruhwald, M., and Nowak-Gottl, U. ( 2016). Biomed Research International,2016,1579428 10.1155/2016/1579428





  • Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18-30 years) with hemophilia. Witkop, M., Guelcher, C., Forsyth, A., Hawk, S., Curtis, R., Kelley, L., Frick, N., Rice, M., Rosu, G., and Cooper, D.L. (2015). American Journal of Hematology, 90:S3-S10.










  • Perceptions about quality of life in a school-based population of adolescents with menorrhagia: Implications for adolescents with bleeding disorders. Pawar, A., Krishnan, R., Davis, K., Bosma, K., and Kulkarni, R. (2008).  Haemophilia, 14, 579-583. Doi:10.1111/j.1365-2516.2008.01652.x




  • Shared topics on the experience of people with haemophilia living in the UK and the USA and the influence of individual and contextual variables: Results from the HERO qualitative study. Palareti, L., Potì, S., Cassis, F., Emiliani, F., Matino, D., & Iorio, A. (2015). International Journal of Qualitative Studies on Health and Well-Being10, 10.3402/qhw.v10.28915.


  • Predictors of quality of life among adolescents and young adults with a bleeding disorder. McLaughlin, J.M., Munn, J.E., Anderson, T.L., Lambing, A., Tortella, B., and Witkop, M.L. (2017). Health and Quality of Life Outcomes, 15:67. DOI 10.1186/s12955-017-0643-7


  • Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experienes, Results, and Opportunities into Solutions (B-HERO-S) study. Buckner, T.W., Witkop, M., Guelcher, C., Frey, M.J., Hunter, S., Peltier, S., Recht, M., Walsh, C., Kessler, C.M., Owens, W., Clark, D.B., Frick, N., Rice, M., Iyer, N.N., Holot, N., Cooper, D.L., and Sidonio Jr, R. (2017). European Journal of Haematology, 98:5-17.


  • Impact of pain and functional impairment in US adult people with hemophilia (PWH): Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment, and quality of life (P-FiQ) study. Kempton, C.L., Recht, M., Neff, A., Wang, M., Buckner, T.W., Soni, A., Quon, D., Witkop, M., Boggio, L., and Cooper, D.L. ( 2015). Blood, 126:39


  • Self-reported prevalence, descripton and management of pain in adults with haemophilia:Methods, demographics and results from the Pain, Functional Impariment, and Quality of life (P-FiQ) study. Witkop, M., Neff, A., Buckner, T.W., Wang, M., Batt, K., Kessler, C.M., Quon, D., Boggio, L., Recht, M., Baumann, K., Gut, R.Z., Cooper, D.L., and Kempton, C.L. (2017).Haemophilia, 1-10. Doi:10.1111/hae.13214



  • Gene therapy for hemophilia. Nienhuis, A.W., Nathwani, A.C., and Davidoff, A.M. (2016). Human Gene Therapy, 27:4, 305-308. Doi: 10.1089/hum.2016.018





  • High School Competition Rates Among Men With Hemophilia,” American Journal of Preventive Medicine (2010), p. 38(4); Supplemental 489-494 (Drake, J., Soucie, M., Cutter, S., Forsberg, A.)























: de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R,de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R,


  • Impact of von Willebrand disease on health-related quality of life in a pediatric population. de Wee EM, Fijnvandraat K, de Goede-Bolder A, Mauser-Bunschoten EP, Eikenboom JCJ, Brons PP, Smiers FJ, Tamminga R, Oostenbrink R, Raat H, van der Bom JG, Leebeek FWG, for the WiN study group J Thromb Haemost 2011; 9: 502–9.






















  • BE EMPOWERED, a specialty pharmacy education program for hemophilia B patients, impacts adult joint bleeds and pediatric use of RICE. Blankenship, C.S., Tortella, B.J., and Bruno, M. (2014). Journal of Managed Care Pharmacy, 20(2):151-158.






  • Hemophilia management via data collection and reporting: Initial findings from the comprehensive care sustainability collaborative. Tarantino, M.D., and Pindolia, V.K. (2017).  Journal of Managed Care & Specialty Pharmacy, 23(1): 51-56.



Social Security/Disability


  • Content comparison of haemophilia specific patient-rated outcome measures with the international classification of functioning, disability and health (ICF, ICF-CY). Riva, S., Bullinger, M., Amann, E., and von Mackensen, S. (2010).  Health and Quality of Life Outcomes, 8:139.





  • A Survey of Team Physicians on the Participation Status of Hemophilic Athletes in National Collegiate Athletic Association Division I Athletics. Fiala, K. A., Hoffmann, S. J., & Ritenour, D. M. (2003). Journal of Athletic Training38(3), 245–251.









  • Thrombophilia: clinical–practical aspects,” Journal of Thrombosis and Thrombolysis, April 2015, Volume 39, Issue 3, pp 367–378
  • “Guidance for the evaluation and treatment of hereditary and acquired thrombophilia,” Journal of Thrombosis and Thrombolysis, January 2016, Volume 41, Issue 1, pp 154–164
  • Thrombophilia in Pregnancy Treatment & Management,” International Journal of . Molecular Science. 2015, Volume 16, issue 12, pp 28418-28428










  • Easier Access: The Pros and Cons of Infusion Devices,” NHF Hemaware March/April 2009 p. 56      




  • Von Willebrand Disease: diagnosis and management, “Pediatrics and Child Health,:  August 2015, Volume 25, Issue 8, pp354–359


  • Von Willebrand Disease: An Overview. Bharati, K. P., & Prashanth, U. R. (2011).  Indian Journal of Pharmaceutical Sciences, 73(1), 7–16.





  • “Females With Severe or Moderate Hemophilia A or B: A U.S. study,” Blood (2007) p. 110(11); 2146 (DiMichele, D.M., Gibb, C.B., Lefkowitz, J.M., Ni, Q., Louides, P.A., Gerber, L.M., & Ganguly) (“Severe and Moderate Hemophilia A and B in U.S. Females,” Haemophilia (2014), p. 20(2); e136-e143 (DiMichele, D.M., Gibb, C.B., Lefkowitz, J.M., Ni, Q., Louides, P.A., Gerber, L.M., & Ganguly)
  • “Are Women Affected by Bleeding Disorders?” Hemophilia Federation of America,
  • “Issues for girls and women with VWD,” World Hemophilia Federation, 2012. World Hemophilia Federation
  • The impact of menstrual disorders on quality of life in women with inherited bleeding disorders. Kadir RA, Edlund M, von Mackensen S    Haemophilia 2010; 16: 832–839.
  • Reproductive health in women with bleeding disorders. Kadir RA, James AH World Federation of Hemophilia (WHF), 2009















Instructions: Please add international/national org as a new heading to resource section of the SW web site.  



International and National Hemophilia Organizations


National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. The organization also includes: Medical and Scientific Advisory Council (MASAC) which was created in 1954 to issue recommendations and advisories on treatment and research, HANDI- Which has been NHF’s full-fledged resource center on hemophilia and other bleeding disorders.

For over 50 years, the World Federation of Hemophilia (WFH) has provided global leadership to improve and sustain care for people with inherited bleeding disorders, including hemophilia, von Willebrand disease, rare factor deficiencies, and inherited platelet disorders.

Hemophilia Alliance is a non- profit organization that works to ensure member Hemophilia Treatment Centers have the expertise, resources and public support to sustain their integrated clinical and pharmacy services for individuals with bleeding and clotting disorders.

Hemophilia Federation of America, Inc. (HFA) is a patient education, services and advocacy organization serving the rare bleeding disorders community. HFA is exclusively focused on the bleeding disorders patient and caregiver community.

  • Partners in Bleeding Disorders education-  The Partners in Bleeding Disorders Education Program promotes excellence in care through education created by and for the federally recognized Hemophilia Treatment Center (HTC) Network and providers from a variety of disciplines that serve patients with bleeding and other coagulation disorders. Programs include Basic Partners, Advanced Partners, Presentation Skills Workshop, and Partners PRN online learning activities.
  • The National Blood Clot Alliance:

Patient education, services and advocacy organization serving the clotting disorders community.

  • Foundation for Women and Girls With Blood Disorders:  The Foundation for Women & Girls with Blood Disorders seeks to ensure that all women and adolescent girls with blood disorders are correctly diagnosed and optimally treated and managed at every life stage. 
  • Parents Empowering Parents (PEP)  is a program designed to promote effective parenting skills to parents of children with hemophilia, and to educate and support parents through classroom discussions and exercises. or 248-952-4PEP
  • PEN Parent Exchange Newsletter- Lauren Kelley newsletters- The oldest US newsletter on hemophilia,  produced by a parent of a son with hemophilia. Provides medical, scientific, consumer, parenting articles and news.