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.

 

ADOPTION

• Adoption Experience in the Bleeding Disorders Community
  Hemaware  01.04.2010  John Gale     NHF  08.27.2015
• "What I didn't know Adopting a Child with Severe Hemophilia"
  https://www.nohandsbutours.com/2017/03/09/didnt-know-adopting-child-severe-hemophilia/

 

ADVOCACY

• "Remembering Ryan White"
  Hemaware https://hemaware.org/life/remembering-ryan-white
  Teen’s AIDS advocacy endures 30 years after his diagnosis ...

 

AGING AND BLEEDING DISORDERS

• "Actively Aging"
  Beamer - 2014-04-15 15:43
  https://hemaware.org/life/actively-aging
   
• "Managing Disease While Aging with Hemophilia"
  By Sarah Aldridge | 02.17.2010
  https://hemaware.org/life/managing-disease-while-aging-hemophilia
   
• "An Intimate Portrait of Life after 50 for Men with Hemophilia"
  https://hemaware.org/life/aging-hemophilia
   
• "Planning for your Future"
  by Leslie Quander Wooldridge 07.15.2016
  https://hemaware.org/life/planning-your-future
   
• "Growing Older Proactively"
  By Sarah Aldridge | 04.25.2011
  https://hemaware.org/life/growing-older-proactively

 

Alternative Therapies and Supplements

• "Complementary and Alternative Medicine for Hemophilia-related Pain Management Requires Careful Scrutiny"
  Kurt Ullman | 03.01.2010
  https://hemaware.org/mind-body/lifting-covers-alternative-pain-remedies
   
• "Self-hypnosis Can Help Decrease Pain from Hemophilia"
  Melanie Padgett Powers | 11.22.2010
  https://hemaware.org/mind-body/hypnosis-pain-management

 

Carriers

• "Knowledge Is Power for Symptomatic Carriers  Hemophilia Gene Carriers may also Bleed"
  By Stephanie Stephens | 06.25.2010
  https://hemaware.org/womens-health/knowledge-power-symptomatic-carriers
   
• "Test Takers Finding out if you’re a Female Carrier of Hemophilia"
  By Heather Boerner | 10.24.2011
  https://hemaware.org/womens-health/test-takers
   
• "Family Planning for Carriers Reproductive choices for hemophilia carriers"
  By Martha J. Frase | 06.30.2010
  https://hemaware.org/womens-health/family-planning-carriers
   
• "With the right planning, having a healthy family is possible"
  By Rebecca A. Clay | 06.29.2010
  https://hemaware.org/womens-health/planning-pregnancy-minimize-risks-bleeding-disorders

 

Child Issues, Abuse and Neglect

• "Child Abuse and Neglect: How to Spot the Signs....",
  https://www.helpguide.org/articles/abuse/child-abuse-and-neglect.html\ "
   
• "Evaluations for Bleeding Disorders in Suspected Child Abuse"
  Pediatrics  April 2013, VOLUME 131 / ISSUE 4 ,From the American Academy of Pediatrics Clinical Report
  http://pediatrics.aappublications.org/content/131/4/e1314
   
• Bruising in children who are assessed for suspected physical abuse.
  Kemp, A. M., Maguire, S. A., Nuttall, D., Collins, P., & Dunstan, F. (2014). Archives of Disease in Childhood, 99(2), 108–113.
  http://doi.org/10.1136/archdischild-2013-304339
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3913107/

 

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 Development with a bleeding disorder and Transition"
  https:hemophilia.org/sites/default/files/document/files/Nurses-Guide-Chapter-13a-Child-Development-with-Bleeding-Disorder-Transition.pdf
   
• Needle Know-How  Calming kids’ anxiety over needles and infusions
  By Heather Boerner | 07.14.2010 | en español
  https://hemaware.org/story/needle-know-how
   
• "Make sure school personnel learn how to address the needs of your child’s condition"
  By Phyllis McIntosh | 08.21.2011
  https://hemaware.org/story/back-school-bleeding-disorder

 

CHILD ISSUES, SAFETY

• "Safety Tips for Infants and Toddlers with hemophilia"
  By Kristina R. Anderson | 12.11.2009
  https://hemaware.org/story/bruise-protection

 

COMPREHENSIVE CARE/HEMOPHILIA TREATMENT CENTERS (HTC)

• "Ground Breaking Guidelines"
  Menaka Pai, BSc, MSc, MD, FRCPC | 10.26.2016
  https://hemaware.org/bleeding-disorders-z/groundbreaking-guideline
   
• "Understanding Patients' Cultural Beliefs about Healthcare"
  By Rebecca A. Clay | 01.30.2011
  https://hemaware.org/mind-body/culture-clash

 

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

• "Impact of mild to severe hemophilia on education and work"
  https://hemophilianewstoday.com/2017/03/22/hemophilia-hurts-education-employment-prospects-patients-caregivers
   
• “Working It Out,”
  Lisette Hilton, NHF Hemaware July/Aug 2005 Volume 10, Issue 4 p. 34

 

FACTOR

• "The Importance of Adhering to Factor Regimens"
  By Rebecca A. Clay | NHF Hemaware 12.29.2010
  https://hemaware.org/story/doctors-orders
   
• "Letter to the Editor: Maintenance of Treatment logs by Hemophilia"
  Hemophilia May, 2010 p. 16 (3): 545-547. (DuTreil, S, Rice, J., Leissinger, CA. Patients.)
   
• "Types of Bleeding Disorders"
  https://www.hemophilia.org/Bleeding-Disorders/Types-of-Bleeding-Disorders

 

FAMILY

• "Grandparents Lighten the Load”
  When a grandchild is diagnosed with a bleeding disorder, most grandparents step in to help. By Sarah Aldridge 01.14.2010 . NHF Hemaware.
  https://hemaware.org/story/grandparents-lighten-load

 

FAMILY PLANNING

• "Family Planning for Carriers Reproductive choices for hemophilia carriers"
  By Martha J. Frase | 06.30.2010
  https://hemaware.org/story/family-planning-carriers

 

HEALTH CARE REFORM

• "What The Healthcare Reform Means To Hemophilia Patients"
  Healthcare reform will occur in stages.
  By David Linney | 09.23.2010 NHF Hemaware
  https://hemaware.org/story/hemophilia-and-healthcare-reform-what-you-need-know
   
• Costs and Coverage of New Hepatitis C Drugs;
  NHF Hemaware Fall 2011 p. 13
   
• Direct-to Consumer Marketing to People with Hemophilia;
  Philip Kucab, Katelyn Dow.Stepanyan,AdrianeFung-BermanJune14,2016.Published
  http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001996
   
• “Will Employers Undermine Health Care Reform by Dumping Sick Employees? “.
  Amy Monahan and Daniel Schwarcz Virginia Law Review Vol. 97, No.1.(March2011),pp.125197.Publishedby:VirginiaLawReview
  StableURL:http://www.jstor.org/stable/41060385.

 

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

• “HIV/AIDS”Hemaware2015
  https://www.hemophilia.org/Bleeding-Disorders/Blood-Safety/HIV/AIDS
   
•   MASAC statement on Pregnancy options for HIV Discordant couples 11/2016 Hemaware. https://www.hemophilia.org/Researchers-Healthcare-Providers/Medical-and-Scientific-Advisory-Council-MASAC/MASAC-Recommendations/MASAC-Statement-on-Pregnancy-Options-for-HIV-Discordant-Couples

 

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

• “Assessment of Acute and Persistent Pain management in Patients with Haemophilia,” Haemophilia (2011), p. 17, 612-620.
   
• “The Pain Management Book for People with Haemophilia and Related Bleeding Disorders,”
  Treatment of Hemophilia – WFH April 2000
   
• Pain management strategies: Dealing with joint bleeds and chronic pain.
  Hemaware Bruce Goldfarb 12.11.2009
  https://hemaware.org/story/pain-management-strategies
   
• Chronic Pain.
  American Society of Anesthesiologists
  https://www.asahq.org/whensecondscount/pain-management/types-of-pain/chr...
   
• Opioid Abuse.
  American Society of Anesthesiologists
  https://www.asahq.org/whensecondscount/pain-management/opioid-treatment/opioid-abuse/
   
• Opioid Treatment and Risks.
  American Society of Anesthesiologists
  https://www.asahq.org/whensecondscount/pain-management/opioid-treatment/
   
• Non-Opioid Treatment.
  American Society of Anesthesiologists
  https://www.asahq.org/whensecondscount/pain-management/non-opioid-treatm...

 

PARENTS

• Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey
  Ann-Marie Nazzaro PhD, ^,Sally Owens BSN, ^,W. Keith HootsMD, and ^,Kelly L. Larson MPHAuthor affiliations, information, and correspondence details .
  Published Online: October 10, 2011
   
• Understanding the experience of caring for children with haemophilia:
  cross-sectional study of caregivers in the United States. Haemophilia 20(4): 541–9. DeKoven M, Karkare S, Kelley LA, (2014)

 

PSYCHOSOCIAL ISSUES

• Interventions for Individuals with High Levels of Needle Fear: Systematic Review of Randomized Controlled Trials and Quasi-Randomized Controlled Trials.T
  he Clinical Journal of Pain, 31(Suppl 10), S109–S123. McMurtry, C. M., Noel, M., Taddio, A., Antony, M. M., Asmundson, G. J. G., Riddell, R. P., Shah,V.(2015).
  http://doi.org/10.1097/AJP.0000000000000273
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4900415/.
   
• Simple Psychological Interventions for Reducing Pain From Common Needle Procedures in Adults: Systematic Review of Randomized and Quasi-Randomized Controlled Trials.
  The Clinical Journal of Pain, 31(Suppl 10), S90–S98. Boerner, K. E., Birnie, K. A., Chambers, C. T., Taddio, A., McMurtry, C. M., Noel, M., Pillai Riddell, R. (2015).
  http://doi.org/10.1097/AJP.0000000000000270
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4900414/
   
• Nurses’ perspectives on supporting children during needle-related medical procedures.
  International Journal of Qualitative Studies on Health and Well-Being, 9, 10.3402/qhw.v9.23063. Karlsson, K., Rydström, I., Enskär, K., & Englund, A.-C. D. (2014).
  http://doi.org/10.3402/qhw.v9.23063
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3955765/
   
• “Not Alone: Single Parents Find Support While Raising Children with Bleeding Disorders,”
  Thomas, Kadesha NHF Hemaware Fall 2011 p. 20
  https://hemaware.org/story/not-alone.
   
• 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/.24217http://onlinelibrary.wiley.com/doi/10.1002/ajh.24217/pdf
• Physical and psychosocial challenges in adult hemophilia patients with inhibitors. duTreil, S. (2014).  Journal of Blood Medicine, 5: 115-122.  http://doi.org/10.2147/JBM.S63265
• 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 http://www.mdpi.com/2077-0383/6/5/54/htm
• 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. Doi.org/10.2147/CIA.S54749 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4501679/  
• Economic costs of hemophilia and the impact of prophylactic treatment on patient management. Chen, Sheh-Li. (2016). American Journal of Managed Care, http://www.ajmc.com/journals/supplement/2016/incorporating-emerging-innovation-hemophilia-ab-tailoring-prophylaxis-management-strategies-managed-care-environment/incorporating-emerging-innovation-hemophilia-ab-tailoring-prophylaxis-management-strategies-managed-care-environment-economic-costs/P-3
• Psychiatric disorders In hemophilic patients Fakhari, A. and Dolatkhah, R. (2014).  Anxiety, 14(43.75), 43-75. http://www.priory.com/fam/hemophil.htm
•  “Study to Examine Postpartum Factor Levels,” NHF Hemaware Jan/Feb 2009 V14 Issue 1 p. 15. https://hemaware.org/story/study-examine-postpartum-factor-levels
• Measuring hemophilia caregiver burden:Validation of the hemophilia caregiver impact measure. Schwartz, Carolyn E., Powell, Victoria E., and Eldar-Lissai, Adi. (2017). Quality of Life Research, April, 1-12, doi:10.1007/s11136-017-1572-y. https://link.springer.com/article/10.1007%2Fs11136-017-1572-y

 

QUALITY OF LIFE

• The cost of severe hemophilia in Europe: the CHESS study. O’Hara, J., Hughes, D., Camp, C., Burke, T., Carroll, L., and Garcia Diego, D-A. (2017 Orphanet Journal of Rare Diseases, 12:106,  doi:  10.1186/s13023-017-0660-yhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452407/
• Predictors of quality of life among adolescents and young adults with a bleeding disorder. Health Quality of Life Outcomes J, McLaughlin, J.M., Munn, J.E., Anderson, T.L., Lambing, A., Tortella, B., and Witkop, M.L. (2017).   15:67,  doi:  10.1186/s12955-017-0643-7https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383972/
• 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 10.1155/2016/1579428https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4884589/
• Strategies to encourage physical activity in patients with hemophilia to improve quality of life. Goto, M., Takedani, H., Yokota, K., & Haga, N. (2016). Journal of Blood Medicine, 7, 85–98. http://doi.org/10.2147/JBM.S84848 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4876843/
• Economic costs of hemophilia and the impact of prophylactic treatment on patient management. Chen, S.L. (2016). American Journal of Managed Care, 2016; 22:S126-S133. http://www.ajmc.com/journals/supplement/2016/Incorporating-Emerging-Innovation-Hemophilia-AB-Tailoring-Prophylaxis-Management-Strategies-Managed-Care-Environment/Incorporating-Emerging-Innovation-Hemophilia-AB-Tailoring-Prophylaxis-Management-Strategies-Managed-Care-Environment-Economic-Costs/
• Racial differences in chronic pain and quality of life among adolescents and young adults with moderate or severe hemophilia. McLaughlin, J.M., Lambing, A., Witkop, M.L., Anderson, T.L., Munn, J., and Tortella B . (2016). Journal of Racial and Ethinic Health Disparities, 3, 11-20. http://doi.org/10.1007/s40615-015-0107-x https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4761000/
• 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. http://onlinelibrary.wiley.com/doi/10.1002/ajh.24220/epdf
• 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., & Pravettoni, G. (2015). Clinical Interventions in Aging, 10, 1141–1146. http://doi.org/10.2147/CIA.S84749 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4501679/
• Haemophilia A Carriers Experience Reduced Health-Related Quality of Life. Gilbert, L., Paroskie, A., Gailani, D., Debaun, M. R., & Sidonio, R. F. (2015). Haemophilia : The Official Journal of the World Federation of Hemophilia, 21(6), 761–765. http://doi.org/10.1111/hae.12690 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4619137/
• Longitudinal Changes in Health-Related Quality of Life for Chronic Diseases: An Example in Hemophilia A. Poon, J.-L., Doctor, J. N., & Nichol, M. B. (2014). Journal of General Internal Medicine, 29(Suppl 3), 760–766. http://doi.org/10.1007/s11606-014-2893-y https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124124/
• Men, masculinities, and hemophilia. Kalmar, L., Oliffe, J.L., Currie, L.M., Jackson, S., and Gue, D. (2016).  American Journal of Men’s Health, 10(6) N22-N32./pdf/10.1177/1557988315596362 http://journals.sagepub.com/doi/pdf/10.1177/1557988315596362
• Health-related quality of life in a chort of adult patients with mild hemophilia A. Walsh, M., MacGregor, D., Stuckless, S., Barrett, B., Kawaja, M., and Scullys, M.-F. (2007).  Journal of Thrombosis and Haemostasis, 6:755-761. Doi:10.1111/j.1538-7836.2008.02929.x http://onlinelibrary.wiley.com/doi/10.1111/j.1538-7836.2008.02929.x/epdf
• Effect of acute bleeding on daily quality of life assessments in patients with congential hemophilia with inhibitors and their families: Observations from the Dosing Observational Study in Hemophilia. Neufield, E.J., Recht, M., Sabio, H., Saxena, K., Solem, C.T., Pickard, A.S., Gut, R.Z., and Cooper, D.L. (2012).  Value in Health, 15:916-925. Doi.org/10.1016/j.jval.2012.05.005http://www.valueinhealthjournal.com/article/S1098-3015(12)016117/fulltext?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1098301512016117%3Fshowall%3Dtrue
• 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
• Challenges of patient-reported outcome assessment in hemophilia care-A state of the art review. Bullinger, M., Globe, D., Wasserman, J., Young, N.L., and von Mackensen, S. (2009).  Value in Health, 12(5): 808-820. Doi:10.1111/j.1524 4733.2009.00523.x http://www.valueinhealthjournal.com/article/S1098-3015(10)60744-9/pdf?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1098301510607449%3Fshowall%3Dtrue
• Updating the Canadian Hemophilia Outcomes-Kids Life Assessment Tool (CHO-KLAT Version2.0). Young, N.L., Wakefield, C., Burke, T.A., Ray, R., McCusker, P.J., and Blanchette, V. (2013). Value in Health, 16:837-841. Doi: 10.1016/j.jval.2013.02.004 http://www.valueinhealthjournal.com/article/S1098-3015(13)00059-4/fulltext?_returnURL=http%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1098301513000594%3Fshowall%3Dtrue
• 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-Being, 10, 10.3402/qhw.v10.28915. http://doi.org/10.3402/qhw.v10.28915 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4649019/
• 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. Doi.org/10.1111.ejh.12854  http://onlinelibrary.wiley.com/doi/10.1111/ejh.12854/full
• 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 http://www.bloodjournal.org/content/126/23/39
• 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 http://onlinelibrary.wiley.com/doi/10.1111/hae.13214/full
• The National Haemophilia Program Standards, Evaluation and Oversight Systems in the United States of America. Skinner, M. W., Soucie, J. M., & McLaughlin, K. (2014). Blood Transfusion, 12(Suppl 3), e542–e548. http://doi.org/10.2450/2014.0019-14 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4044795/
• 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 http://online.liebertpub.com/doi/pdf/10.1089/hum.2016.018

 

SCHOOL ISSUES

• 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.) https://www.ncbi.nlm.nih.gov/pubmed/20331948
• Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders and in Children and Adolescents with Stroke: Cross-Sectional Comparison to Siblings and Peers Neuner, B., von Mackensen, S., Holzhauer, S., Funk, S., Klamroth, R., Kurnik, K., … Nowak-Göttl, U. (2016).. BioMed Research International, 2016, 1579428. http://doi.org/10.1155/2016/1579428 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4884589/
• Patterns of bruising in preschool children—a longitudinal study. Kemp, A. M., Dunstan, F., Nuttall, D., Hamilton, M., Collins, P., & Maguire, S. (2015). Archives of Disease in Childhood, 100(5), 426–431. http://doi.org/10.1136/archdischild-2014-307120 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4413862/

 

SOCIAL WORK

• “Self Care: An Ethical Responsibility,” NASW Networker (2010) (Lipschutz, Ruth.) http://naswil.org/news/chapter-news/featured/ethics-corner-self-care-an-ethical-responsibility/
• “Running on Empty: Compassion Fatigue in Health Professionals,” Rehab & Community Care Medicine Spring, 2007 (Malthieu, Francoise.) http://www.compassionfatigue.org/pages/RunningOnEmpty.pdf
• “Compassion Fatigue: Being an Ethical Social Worker,” The New Social Worker (2014) (Wharton, Tracy C.)http://www.socialworker.com/feature-articles/ethics-articles/Compassion_Fatigue%3A_Being_an_Ethical_Social_Worker/
• Social participation of patients with hemophilia in the Netherlands. Plug, I., Peters, M., Mauser-Bunschoten, E. P., de Goede-Bolder, A., Heijnen, L., Smit, C., Willemse, J., Rosendaal, F. R., & van der Bom, J. G. (2008).  Blood, 111(4), 1811-1815. Accessed June 09, 2017. https://doi.org/10.1182/blood-2007-07-102202. http://www.bloodjournal.org/content/111/4/1811.long?sso-checked=true
• Tailoring care to haemophilia patients’ needs: which specialty and when? Morfini, M., Benson, G., Jiménez-Yuste, V., Ljung, R., Mannucci, P. M., Pasta, G., … Šalek, S. Z. (2015). Blood Transfusion, 13(4), 644–650. http://doi.org/10.2450/2015.0302-14 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4624542/
• Providing Young Women with Credible Health Information about Bleeding Disorders. Rhynders, P. A., Sayers, C. A., Presley, R. J., & Thierry, J. M. (2014). American Journal of Preventive Medicine, 47(5), 674–680. http://doi.org/10.1016/j.amepre.2014.07.040 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493902/
• Definition of an organizational model for the prevention and reduction of health and social impacts of inherited bleeding disorders. Calizzani, G., Menichini, I., Candura, F., Lanzoni, M., Profili, S., Tamburrini, M. R., … Grazzini, G. (2014). Blood Transfusion, 12(Suppl 3), s582–s588. http://doi.org/10.2450/2014.0087-14s https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4044815/
• The social burden and quality of life of patients with haemophilia in Italy. Kodra, Y., Cavazza, M., Schieppati, A., De Santis, M., Armeni, P., Arcieri, R., … Taruscio, D. (2014). Blood Transfusion, 12(Suppl 3), s567–s575. http://doi.org/10.2450/2014.0042-14 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4044804/
• Assessing patients’ and caregivers’ perspectives on stability of factor VIII products for haemophilia A: a web-based study in the United States and Canada DiBenedetti, D. B., Coles, T. M., Sharma, T., Pericleous, L., & Kulkarni, R. (2014). Haemophilia, 20(4), e296–e303. http://doi.org/10.1111/hae.12459 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282359/
• Treatment of Anxiety Disorders and Comorbid Alcohol Abuse with Buspirone in a Patient with Antidepressant-Induced Platelet Dysfunction: A Case Report. Mazhar, M., Hassan, T., & Munshi, T. (2013). Case Reports in Psychiatry, 2013, 572630. http://doi.org/10.1155/2013/572630 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3876590/
  : 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.http://onlinelibrary.wiley.com/doi/10.1111/j.1538-7836.2010.04175.x/epdf
• Randomized controlled trial of elctro-acupuncture for Autism Spectrum Disorder. Wong, V., Chen, W.-X., and Liu, W.-L. (2010). Alternative Medicine Review, 15:2, 136-146 http://www.altmedrev.com/publications/15/2/136.pdfhttp://onlinelibrary.wiley.com/doi/10.1111/j.1538-7836.2010.03864.x/epdf
• National and international registries of rare bleeding disorders. Peyvandi, F., & Spreafico, M. (2008). Blood Transfusion, 6(Suppl 2), s45–s48. http://doi.org/10.2450/2008.0037-08 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652224/
• Joining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagement. Gue, D., Squire, S., McIntosh, K., Bartholomew, C., Summers, N., Sun, H., … Jackson, S. (2015). Journal of Multidisciplinary Healthcare, 8, 527–534. http://doi.org/10.2147/JMDH.S93579 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676616/
• Evidence-based guidelines support integrated disease management as the optimal model of haemophilia care. Pipe, S.W. and Kessler, C.M. (2016) Haemophilia, 22 (suppl. 3), 3-5. http://onlinelibrary.wiley.com/doi/10.1111/hae.12997/epdf
• Perceptions of men with moderate to severe hemophilia regarding the management of their chronic disorder and utilization of community-based support. Rolstadm E.B. (2015). American Journal of Men’s Health, 9(6), 486-495. http://journals.sagepub.com/doi/pdf/10.1177/1557988314551360
• Meeting the emerging public health needs of persons with blood disorders. Parker, C.S., Tsai, J., Siddiqi, A., Atrash, H., and Richardson, L.C. (2014). American Journal of Preventative Medicine, 47(5):658-663. Doi.org/10.1016/j.amepre.2014.07.008 http://ac.els-cdn.com/S0749379714003742/1-s2.0-S0749379714003742-main.pdf?_tid=bdfd5ff8-4c84-11e7-a4ac-00000aab0f26&acdnat=1496952046_75c1cfc70bb629a007a136d446bb9f82
• Public health surveillance of nonmalignant blood disorders. Beckman, M.G., Hulihan, M.M., Byams, V.R., Oakley, M.A., Reyes, N., Trimble, S., and Grant, A.M. (2014). American Journal of Preventative Medicine, 47(5):664-668. Doi.org/10.1016/j.amepre.2014.07.025 http://www.sciencedirect.com/science/article/pii/S0749379714003924
• A public health approach to the prevention of inhibitors in hemophilia. Soucie, J.M., Miller, C.H., Kelly, F.M., Oakley, M., Brown, D.L., and Kucab, P. (2014). American Journal of Preventative Medicine, 47(5): 669-673. Doi.org/10.1016/j.amepre.2014.07.007 http://www.sciencedirect.com/science/article/pii/S0749379714003730
• Providing young women with credible health information about bleeding disorders. Rhynders, P.A., Sayers, C.A., Presley, R.J., and Thierry, J.M. (2014). American Journal of Preventative Medicine, 47(5):674-680. Doi.org/10.1016/j.amepre.2014.07.040 http://www.sciencedirect.com/science/article/pii/S0749379714004073   
• Serious child and adolescent behavior disorders; a valuation study by professionals, youth and parents. Vermeulen, K. M., Jansen, D. E. M. C., Buskens, E., Knorth, E. J., & Reijneveld, S. A. (2017). BMC Psychiatry, 17, 208. http://doi.org/10.1186/s12888-017-1363-6 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5457555/
• Behavior problems and children’s academic achievement: A test of growth-curve models with gender and racial differences. Kremer, K. P., Flower, A., Huang, J., & Vaughn, M. G. (2016). Children and Youth Services Review, 67, 95–104. http://doi.org/10.1016/j.childyouth.2016.06.003https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5436618/
• Behavioral Patterns in Special Education. Good Teaching Practices. Rodríguez-Dorta, M., & Borges, Á. (2017). Frontiers in Psychology, 8, 631. http://doi.org/10.3389/fpsyg.2017.00631 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412478/
• Regular physical education class enhances sociality and physical fitness while reducing psychological problems in children of multicultural families. Park, J.-W., Park, S.-H., Koo, C.-M., Eun, D., Kim, K.-H., Lee, C.-B., … Jee, Y.-S. (2017). Journal of Exercise Rehabilitation, 13(2), 168–178. http://doi.org/10.12965/jer.1734948.474 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5412490/

 

SUMMER CAMPS

• “My Trip to Camp Hemotion,” NHFHemaware January/February 2008 p. 48 https://hemaware.org/community-pulse/my-trip-camp-hemotion

 

Trials

• Outcome of Clinical Trials with New Extended Half-Life FVIII/IX Concentrates. Mancuso, M. E., & Santagostino, E. (2017). Journal of Clinical Medicine, 6(4), 39. http://doi.org/10.3390/jcm6040039 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406771/
• 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. http://www.jmcp.org/doi/10.18553/jmcp.2014.20.2.151
• Motivational techniques to improve self-care in hemophilia: the need to support autonomy in children. Bérubé, S., Mouillard, F., Amesse, C., & Sultan, S. (2016). BMC Pediatrics, 16, 4. http://doi.org/10.1186/s12887-016-0542-9 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4707725/
• Bleeding disorders, menorrhagia and iron deficiency: impacts on health-related quality of life. RAE, C., FURLONG, W., HORSMAN, J., PULLENAYEGUM, E., DEMERS, C., ST-LOUIS, J., … BARR, R. (2013). Haemophilia : The Official Journal of the World Federation of Hemophilia, 19(3), 385–391. http://doi.org/10.1111/hae.12014https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4171051/
• Coping strategies, pain, and stability in patients with hemophilia and related disorders. Santavirta, N., Bjorvell, H., Solovieva, S., Alaranta, H., Hurskainen, K., and Konttinen, Y.T. (2000). Arthritis Care and Research, 45:48-55. http://onlinelibrary.wiley.com/doi/10.1002/1529-0131(200102)45:1%3C48::AID-ANR83%3E3.0.CO;2-1/pdf                          
• 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. http://www.jmcp.org/doi/10.18553/jmcp.2017.23.1.51

 

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

• Impact of Mild versus Moderate Intensity Aerobic Walking Exercise Training on Markers of Bone Metabolism and Hand Grip Strength in Moderate Hemophilic A Patients. Al-Sharif, F. A.-G., Al-Jiffri, O. H., El-Kader, S. M. A., & Ashmawy, E. M. (2014). African Health Sciences, 14(1),11,16.http://doi.org/10.4314/ahs.v14i1.3https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4449068/
• 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 Training, 38(3), 245–251.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC233179/

 

SURVEILLANCE

• Community Counts https://www.cdc.gov/ncbddd/hemophilia/communitycounts/about.html
• MY LIFE OUR FUTURE-https://www.hemophilia.org/research/research-projects/my-life-our-future-development-of-the-worlds-largest-genetic-research-repository-for-hemophilia

 

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

• “Away We Go...Travel Tips for the Bleeding Disorder Community,” HFA, 2013: http://www.hemophiliafed.org/uploads/Away-We-Go_2.pdf
• “Travel and vacation planning,” NHF, Nursing Working Group, Nurses’ Guide to Bleeding Disorders, 2013.https://www.hemophilia.org/sites/default/files/document/files/nurses-guide-chapter-15-travel-vacation-planning.pdf

 

UNIVERSAL DATA COLLECTION

• “A Form of One’s Own,” NHF Hemaware March/April 2008 p. 55
• “Report on the Universal Data Collection Program, 2005-2009,” Centers for Disease Control and Prevention, January 2014, pp 1-26
• “Lessons Learned and Future Directions” Resource from CDC: https://www.cdc.gov/ncbddd/blooddisorders/udc/documents/Simmons_UDCLessonsLearnedFactSheet_508.pdf

 

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

• “Insurance, Home Therapy, and Prophylaxis in U.S. Youth with Severe Hemophilia,” American Journal of Preventive Medicine (2011) p. 41 (6), Supplement 4:  338-345. (Baker, J., Riske, B., Voutsis, M., Cutter, S., et al.)  
• Independence Days: Time to Take Ownership of Your Healthcare, Hemeaware, Fall 2016.https://hemaware.org/story/independence-days
• Dating Disclosure: Deciding when—and how—to discuss your bleeding disorder, Hemeaware, September 2014. https://hemaware.org/story/dating-disclosure
• Career Choices: Experts offer tips for life as a professional, Hemaware, August 2015.https://hemaware.org/story/career-choices
• Child and Adolescent Mental Health, National Institute of Mental Health: https://www.nimh.nih.gov/health/topics/child-and-adolescent-mental-healt...
• Principles of Adolescent Substance Use Disorder Treatment: A Research-Based Guide, National Institute on Drug Abuse:https://www.drugabuse.gov/
• Instructions: Please add international/national org as a new heading to resource section of the SW web site.

 

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.