Mental Health and Bleeding Disorders Research

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Bleeding Disorders

The relationship of self-compassion and hope with quality of life for individuals with bleeding disorders

Klein, Darci E., Carrie L. Winterowd, Meredith D. Ehrhardt, Jenny Carrick Carter, Osman Khan, and Sunnye Mayes. 2020. “The Relationship Of Self‐Compassion And Hope With Quality Of Life For Individuals With Bleeding Disorders”. Haemophilia. doi:10.1111/hae.13959.

http://mentalhealthmatterstoo.com/wp-content/uploads/2020/03/The-relationship-of-self-compassion-and-hope-with-quality-of-life-for-individuals-with-bleeding-disorders.pdf

Psychosocial aspects of haemophilia: a systematic review of the methodologies and findings

Cassie, F.R.M.Y., F. Querol, A. Forsyth, and A. Iorios. 2012. “Psychosocial Aspects Of Haemophilia: A Systematic Review Of Methodologies And Findings”. Haemophilia, no. 18: e101-e114. doi:10.111/j.1365-2516.2011.02683.x.

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2516.2011.02683.x

Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study

Buckner, Tyler W., Michelle Witkop, Christine Guelcher, Mary Jane Frey, Susan Hunter, Skye Peltier, and Michael Recht et al. 2017. “Management Of US Men, Women, And Children With Hemophilia And Methods And Demographics Of The Bridging Hemophilia B Experiences, Results And Opportunities Into Solutions (B-HERO-S) Study”. European Journal Of Haematology 98: 5-17. doi:10.1111/ejh.12854.

https://doi.org/10.1111/ejh.12854

Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey

Witkop, Michelle L., Angela Lambing, Cynthia D. Nichols, James E. Munn, Terry L. Anderson, and Bartholomew J. Tortella. 2019. “Interrelationship Between Depression, Anxiety, Pain, And Treatment Adherence In Hemophilia: Results From A US Cross-Sectional
Survey”. Patient Preference And Adherence Volume 13: 1577-1587. doi:10.2147/ppa.s212723.

https://doi.org/10.2147/PPA.S212723

Physician trust and depression influence adherence to factor replacement: a single centre cross‐sectional study

Tran, D. Q., V. Barry, A. Antun, M. Ribeiro, S. Stein, and C. L. Kempton. 2016. “Physician Trust And Depression Influence Adherence To Factor Replacement: A Single-Centre Cross-Sectional Study”. Haemophilia 23 (1): 98-104. doi:10.1111/hae.13078.

https://onlinelibrary.wiley.com/doi/10.1111/hae.13078

What can we learn from using formal patient- reported outcome instruments to assess pain, functional impairment, anxiety, and depression in US adults with hemophilia?

Buckner, Tyler W., Katharine Batt, David L. Cooper, and Christine L. Kempton. 2018. “What Can We Learn From Using Formal Patient-Reported Outcome Instruments To Assess Pain, Functional Impairment, Anxiety, And Depression In US Adults With Hemophilia?”. European Journal Of Haematology 100: 3-4. doi:10.1111/ejh.13026.

https://www.onlinelibrary.wiley.com/doi/epdf/10.1111/ejh.13026

Disease-related distress among adults with hemophilia: A qualitative study

Mattis, Shanna, Vaughn Barry, Natalie Taylor, Mary Ellen Lynch, Katharine Tatum, Stephanie Whitten, and Christine L. Kempton. 2019. “Disease‐Related Distress Among Adults With Haemophilia: A Qualitative Study”. Haemophilia 25 (6): 988-995. doi:10.1111/hae.13850.

https://www.onlinelibrary.wiley.com/doi/10.1111/hae.13850

HERO Study: Key insights into life with hemophilia

Completed in 2012, the HERO study surveyed 1,386 people in 11 countries, making it the largest ever multinational, multi-method study of life with haemophilia. The HERO study brings to light the common challenges of people living with hemophilia around the globe.

https://www.novonordisk.com/about-novo-nordisk/changing-haemophilia/changing-haemophilia-focus-areas/awareness-and-access-to-care/hero-haemophilia.html

From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies

Wiley, Ryan E., Charles P. Khoury, Adrian W. K. Snihur, Marni Williams, David Page, Nicole Graham, Lori Laudenbach, Cindy Milne‐Wren, and Jayson M. Stoffman. 2019. “From The Voices Of People With Haemophilia A And Their Caregivers: Challenges With Current Treatment, Their Impact On Quality Of Life And Desired Improvements In Future Therapies”. Haemophilia 25 (3): 433-440. doi:10.1111/hae.13754.

https://doi.org/10.1111/hae.13754

Predictor of quality of life among adolescents and young adults with a bleeding disorder

McLaughlin, John M., James E. Munn, Terry L. Anderson, Angela Lambing, Bartholomew Tortella, and Michelle L. Witkop. 2017. “Predictors Of Quality Of Life Among Adolescents And Young Adults With A Bleeding Disorder”. Health And Quality Of Life Outcomes 15 (1). doi:10.1186/s12955-017-0643-7.

http://europepmc.org/article/PMC/5383972

The most overlooked hemophilia symptom

“The Most Overlooked Hemophilia Symptoms (Infographic) | Myhemophiliateam”. 2016. Myhemophiliateam.Com.

https://www.myhemophiliateam.com/resources/the-mostoverlooked-hemophilia-symptoms-infographic?s=f

Perceived well-being and mental health in haemophilia

Negri, Luca, Andrea Buzzi, Anna Brigida Aru, Antonino Cannavò, Claudio Castegnaro, Maria Rosaria Fasulo, and Giuseppe Lassandro et al. 2020. “Perceived Well-Being And Mental Health In Haemophilia”. Psychology, Health & Medicine, 1-11. doi:10.1080/13548506.2020.1717556.

https://www.tandfonline.com/doi/full/10.1080/13548506.2020.1717556

Adults with Hemophilia

Prevalence of depression in adults with hemophilia

Iannone, M., L. Pennick, A. Tom, H. Cui, M. Gilbert, K. Weihs, and A. T. Stopeck. 2012. “Prevalence Of Depression In Adults With Haemophilia”. Haemophilia 18 (6): 868-874. doi:10.1111/j.1365-2516.2012.02863.x.

https://doi.org/10.1111/j.1365-2516.2012.02863.x

Multiple Comorbid Conditions among Middle-Aged and Elderly Hemophilia Patients: Prevalence Estimates and Implications for Future Care.

Khleif, Aroub A., Nidra Rodriguez, Deborah Brown, and Miguel A. Escobar. 2011. “Multiple Comorbid Conditions Among Middle-Aged And Elderly Hemophilia Patients: Prevalence Estimates And Implications For Future Care”. Journal Of Aging Research 2011: 1-8. doi:10.4061/2011/985703.

https://www.ncbi.nlm.nih.gov/pubmed/21912745

Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults

Pinto, P., Paredes, A., Moreira, P., Fernandes, S., Lopes, M., Carvalho, M. and Almeida, A. (2018).” Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults.” Haemophilia, 24(5), pp.e344-e353.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hae.13548

Young Adults with Hemophilia

Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status

Curtis, Randall, Judith Baker, Brenda Riske, Megan Ullman, Xiaoli Niu, Kristi Norton, Mimi Lou, and Michael B. Nichol. 2015. “Young Adults With Hemophilia In The U.S.: Demographics, Comorbidities, And Health Status”. American Journal Of Hematology 90: S11-S16. doi:10.1002/ajh.24218.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajh.24218

Unmet needs in the transition to adulthood 18 to 30 year old people with hemophilia

Quon, Doris, Mark Reding, Chris Guelcher, Skye Peltier, Michelle Witkop, Susan Cutter, and Cathy Buranahirun et al. 2015. “Unmet Needs In The Transition To Adulthood: 18- To 30-Year-Old People With Hemophilia”. American Journal Of Hematology 90: S17-S22. doi:10.1002/ajh.24219.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajh.24219

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

Limperg, P. F., L. Haverman, H. Maurice-Stam, M. Coppens, C. Valk, M. J. H. A. Kruip, J. Eikenboom, M. Peters, and M. A. Grootenhuis. 2017. “Health-Related Quality Of Life, Developmental Milestones, And Self-Esteem In Young Adults With Bleeding Disorders”. Quality Of Life Research 27 (1): 159-171. doi:10.1007/s11136-017-1696-0.

https://link.springer.com/article/10.1007/s11136-017-1696-0

Children with Hemophilia

Neuropsychological function in children with hemophilia: A review of the Hemophilia Growth and Development Study and introduction of the current eTHINK study

Buranahirun, Cathy, Karin S. Walsh, Christine Mrakotsky, Stacy E. Croteau, Madhvi Rajpurkar, Susan Kearney, Cara Hannemann, Greta N. Wilkening, Kevin A. Shapiro, and David L. Cooper. 2019. “Neuropsychological Function In Children With Hemophilia: A Review Of The Hemophilia Growth And Development Study And Introduction Of The Current Ethink Study”. Pediatric Blood & Cancer 67 (1). doi:10.1002/pbc.28004

https://onlinelibrary.wiley.com/doi/epdf/10.1002/pbc.28004

Male gender, school attendance and sports participation are positively associated with health-related quality of life in children and adolescents with congenital bleeding disorders

Limperg, P. F., M. M. H. Joosten, K. Fijnvandraat, M. Peters, M. A. Grootenhuis, and L. Haverman. 2018. “Male Gender, School Attendance And Sports Participation Are Positively Associated With Health-Related Quality Of Life In Children And Adolescents With Congenital Bleeding Disorders”. Haemophilia 24 (3): 395-404. doi:10.1111/hae.13420.

Quality of life in haemophilia A: Hemophilia Utilization Study Va (HUGS-Va)

POON, J.-L., Z.-Y. ZHOU, J. N. DOCTOR, J. WU, M. M. ULLMAN, C. ROSS, and B. RISKE et al. 2012. “Quality Of Life In Haemophilia A: Hemophilia Utilization Group Study Va (HUGSVa)”. Haemophilia 18 (5): 699-707. doi:10.1111/j.1365-2516.2012.02791.x.

https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2516.2012.02791.x

Female with Bleeding Disorders

The long‐term psychological management of women and girls with inherited bleeding disorders

DUNN, N. F. 2011. “The Long-Term Psychological Management Of Women And Girls With Inherited Bleeding Disorders”. Haemophilia 17: 38-41. doi:10.1111/j.1365-2516.2011.02564.x.

https://doi.org/10.1111/j.1365-2516.2011.02564.x

Women with bleeding disorders

Hermans, C., and R. Kulkarni. 2018. “Women With Bleeding Disorders”. Haemophilia 24: 29-36. doi:10.1111/hae.13502.

https://onlinelibrary.wiley.com/doi/full/10.1111/hae.13502

Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia

Olsson, A., M. Hellgren, E. Berntorp, and F. Baghaei. 2015. “Association Between Bleeding Tendency And Health-Related Quality Of Life In Carriers Of Moderate And Severe Haemophilia”. Haemophilia 21 (6): 742-746. doi:10.1111/hae.12796.

https://onlinelibrary.wiley.com/doi/10.1111/hae.12796

von Willebrand

Joint bleeds in von Willebrand disease patients have significant impact on quality of life and joint integrity: A cross-sectional study

van Galen, K. P. M., Y. V. Sanders, U. Vojinovic, J. Eikenboom, M. H. Cnossen, R. E. G. Schutgens, and J. G. van der Bom et al. 2015. “Joint Bleeds In Von Willebrand Disease Patients Have Significant Impact On Quality Of Life And Joint Integrity: A Cross-Sectional Study”. Haemophilia 21 (3): e185-e192. doi:10.1111/hae.12670.

https://onlinelibrary.wiley.com/doi/10.1111/hae.12670

Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand’s disease receiving care in Haemophilia Treatment Centers – A case control study

Kirtava, A., C. Drews, C. Lally, A. Dilley, and B. Evatt. 2003. “Medical, Reproductive And Psychosocial Experiences Of Women Diagnosed With Von Willebrand’s Disease Receiving Care In Haemophilia Treatment Centres: A Case-Control Study”. Haemophilia 9 (3): 292-297. doi:10.1046/j.1365-2516.2003.00756.x.

https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2516.2003.00756.x

Hemophilia Carriers

Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia

Olsson, A., M. Hellgren, E. Berntorp, and F. Baghaei. 2015. “Association Between Bleeding Tendency And Health-Related Quality Of Life In Carriers Of Moderate And Severe Haemophilia”. Haemophilia 21 (6): 742-746. doi:10.1111/hae.12796.

https://onlinelibrary.wiley.com/doi/10.1111/hae.12796

Inhibitors

Physical and psychosocial challenges in adult hemophilia patients with inhibitors

duTreil, Sue. 2014. “Physical And Psychosocial Challenges In Adult Hemophilia Patients With Inhibitors”. Journal Of Blood Medicine, 115. doi:10.2147/jbm.s63265.

https://www.scribd.com/document/253864604/JBM-63265-Physical-and-Psychosocial-Challenges-in-Adult-Hemophilia-Pat-072214

Impact of haemophilia with inhibitors on caregiver burden

DeKoven, M., Karkare, S., Lee, W., Kelley, L., Cooper, D., Pham, H., Powers, J. and Wisniewski, T. (2014).” Impact of haemophilia with inhibitors on caregiver burden in the United States”. Haemophilia, 20(6), pp.822-830.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/hae.12501

Chronic Conditions

Living with a rare condition: The effect of mental health

2018. Raredisease.Org.Uk.

https://www.cdc.gov/workplacehealthpromotion/tools-resources/pdfs/issue-brief-no-2-mental-health-and-chronic-disease.pdf

Depression, anxiety and their relationship with chronic diseases: a review of the epidemiology, risk and treatment evidence

D Clarke, K. Currie (2009). Medical Journal of Australia, MJA 2009; 190: S54–S60

https://www.mja.com.au/system/files/issues/190_07_060409/cla10974_fm.pdf

Chronic Pain

Opioid Exposure in Haemophilia Patients is Common and Underreported

Peltier, Skye J., Marshall A. Mazepa, Rebecca L. Freese, Shannon F. Nelson, Susan L. Kearney, and Mark T. Reding. 2020. “Opioid Exposure In Haemophilia Patients Is Common And Underreported”. Haemophilia. doi:10.1111/hae.13950.

https://onlinelibrary.wiley.com/doi/10.1111/hae.13950

A review of evidence about behavioral and psychological aspects of chronic pain among people with hemophilia

Elander, J. 2013. “A Review Of Evidence About Behavioural And Psychological Aspects Of Chronic Joint Pain Among People With Haemophilia”. Haemophilia 20 (2): 168-175. doi:10.1111/hae.12291.

https://doi.org/10.1111/hae.12291

Patient-reported outcomes and joint status across subgroups of US adults with hemophilia with varying characteristics: Results from the pain, functional impairment, and quality of life (P-FiQ) study

Buckner, Tyler W., Katharine Batt, Doris Quon, Michelle Witkop, Michael Recht, Craig Kessler, and Kimberly Baumann et al. 2018. “Assessments Of Pain, Functional Impairment, Anxiety, And Depression In US Adults With Hemophilia Across Patient-Reported Outcome Instruments In The Pain, Functional Impairment, And Quality Of Life (P-Fiq) Study”. European Journal Of Haematology 100: 5-13. doi:10.1111/ejh.13027.

https://onlinelibrary.wiley.com/doi/epdf/10.1111/ejh.13027

Posttraumatic stress disorder and chronic pain are associated with opioid use disorder: Results from a 2012-2013 American nationally representative survey

Bilevicius, Elena, Jordana L. Sommer, Gordon J.G. Asmundson, and Renée El-Gabalawy. 2018. “Posttraumatic Stress Disorder And Chronic Pain Are Associated With Opioid Use Disorder: Results From A 2012-2013 American Nationally Representative Survey”. Drug And Alcohol Dependence 188: 119-125. doi:10.1016/j.drugalcdep.2018.04.005.

https://www.ncbi.nlm.nih.gov/pubmed/29775955

Chronic pain and suicide risk: A comprehensive review

Racine, Mélanie. 2018. “Chronic Pain And Suicide Risk: A Comprehensive Review”. Progress In Neuro-Psychopharmacology And Biological Psychiatry 87: 269-280. doi:10.1016/j.pnpbp.2017.08.020.

https://www.sciencedirect.com/science/article/pii/S0278584617304670

Racial differences in chronic pain and quality of life among adolescents and young adults with moderate or severe hemophilia

McLaughlin, John M., Angela Lambing, Michelle L. Witkop, Terry L. Anderson, James Munn, and Bartholomew Tortella. 2015. “Racial Differences In Chronic Pain And Quality Of Life Among Adolescents And Young Adults With Moderate Or Severe Hemophilia”. Journal Of Racial And Ethnic Health Disparities 3 (1): 11-20. doi:10.1007/s40615-015-0107-x.

https://link.springer.com/article/10.1007/s40615-015-0107-x

Stress

The United States of Stress

Slade, Maureen, and MD Allison Young. 2019. “The United States Of Stress 2019”. Everydayhealth.Com.

https://www.everydayhealth.com/wellness/united-states-of-stress

Uncovering the link between emotional stress and heart disease

Publishing, Harvard. 2017. “Uncovering The Link Between Emotional Stress And Heart Disease – Harvard Health”. Harvard Health.

https://www.health.harvard.edu/heart-disease-overview/uncovering-the-link-between-emotional-stress-and-heart-disease

Neural circuits in anxiety and stress disorders

Liberzon, Israel, Elizabeth Duval, and Arash Javanbakht. 2015. “Neural Circuits In Anxiety And Stress Disorders: Focused Review”. Therapeutics And Clinical Risk Management, 115. doi:10.2147/tcrm.s48528.

https://www.dovepress.com/neural-circuits-in-anxiety-and-stress-disorders-anbspfocused-review-peer-reviewed-fulltext-article-TCRM#