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.

 

ADOPTION

 

ADVOCACY

 

AGING AND BLEEDING DISORDERS

 

Alternative Therapies and Supplements

 

Carriers

 

Child Issues, Abuse and Neglect

 

CHILD ISSUES, BULLYING

  • “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)

 

CHILD ISSUES AND DEVELOPMENT

 

CHILD ISSUES, SAFETY

 

COMPREHENSIVE CARE/HEMOPHILIA TREATMENT CENTERS (HTC)

 

DENTAL CARE

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

 

EDUCATIONAL/INFORMATIVE

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

 

EMPLOYMENT

 

FACTOR

 

FAMILY

 

FAMILY PLANNING

 

HEALTH CARE REFORM

 

HISTORY of HEMOPHILIA

  • “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. 

 

HIV/AIDS

 

MEN with HEMOPHILIA

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

 

MENTAL HEALTH

  • “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

 

NEWLY DIAGNOSED

  • 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.

 

ON-LINE/SOCIAL MEDIA

  • 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;

 

OUTREACH

  • 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.

 

Pain and PAIN MANAGEMENT

 

PARENTS

 

PSYCHOSOCIAL ISSUES

 

QUALITY OF LIFE

 

SCHOOL ISSUES

 

SOCIAL WORK

 

SUMMER CAMPS

 

Trials

 

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.  https://hqlo.biomedcentral.com/articles/10.1186/1477-7525-8-139

 

SPORTS

 

SURVEILLANCE

 

THROMBOSIS/THROMBOPHILIA

  • “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

 

TRAVEL/VACATION

 

UNIVERSAL DATA COLLECTION

 

VENOUS ACCESS DEVICES

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

 

VON WILLEBRAND DISEASE

  • 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.
  • VonWillebrandDisease.GoodeveA&JamesPGeneReviews.2014; http://www.ncbi.nlm.nih.gov/books/NBK7014/.

 

WOMEN & GIRLS WITH BLEEDING DISORDERS

  • “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,http://www.hemophiliafed.org/bleeding-disorders/can-women-have-bleeding-disorders/
  • “Issues for girls and women with VWD,” World Hemophilia Federation, 2012. World Hemophilia Federation  https://www.wfh.org/en/page.aspx?pid=675
  • 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 http://www1.wfh.org/publication/files/pdf-1206.pdf

 

YOUTH/TEEN ISSUES

 

RESOURCES

  • International and National Hemophilia Organizations
  • National  Hemophilia Foundation - www.hemophilia.org 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.
  • World Federation of Hemophilia - https://www.wfh.org 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 Foundation - https://hemophiliaalliancefoundation.org-  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  http://www.hemophiliafed.org/ 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 - http://partnersprn.org/  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: http://www.stoptheclot.org
  • Patient education, services and advocacy organization serving the clotting disorders community.
  • Foundation for Women and Girls With Blood Disorders: http://www.fwgbd.org  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) http://pepprogram.org  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.  PEP.Suzanne@gmail.com or 248-952-4PEP
  • PEN Parent Exchange Newsletter-http://www.kelleycom.com/newsletters.html- 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.