Literature DB >> 26822547

Developing a multidisciplinary Young Women's Blood Disorders Program: a single-centre approach with guidance for other centres.

A Zia1,2,3, M Lau1,3, J Journeycake1,2,3, R Sarode4, J Marshall3, N De Simone4, E Wilson5, A Winborn3, P Kouides6.   

Abstract

INTRODUCTION: Bleeding from the reproductive tract in women is a natural event, generally occurring with menstruation and childbirth. Women with an underlying bleeding disorder may experience heavy menstrual bleeding (HMB) and thereby, unacceptable blood loss. Up to 20% of US women with abnormal uterine bleeding and a normal gynaecological exam may have an underlying bleeding disorder corresponding to almost 2-3 million American women. These females face many obstacles in achieving optimum medical care for their problems. A haematologist may not evaluate these women as they are treated symptomatically. Recognition of an underlying bleeding disorder is not straightforward and many come to attention after serious bleeding events. Although mortality from HMB is uncommon, the true burden of HMB is its impact on health-related quality of life. To address these issues, women with HMB require a comprehensive approach to their care.
METHODS: These reasons compelled us to institute a multidisciplinary Young Women's Blood Disorders (YWBD) Program at our institution.
RESULTS: Herein, we describe the process of developing this program involving paediatric haematology, adolescent medicine and paediatric/adolescent gynaecology, and the expertise of a laboratory coagulationist, a nutritionist and nursing professionals. We also describe our experience with patient selection, the role of each specialty in the program, our approach to testing, the coordination of care and overall management of this patient population. Lastly, we propose metrics that could be followed in justifying the support of such a program.
CONCLUSIONS: There is a growing need to offer comprehensive care to women with HMB and blood disorders. The YWBD program at our institution appears to be successful in delivering optimal care to young women affected with HMB.
© 2016 John Wiley & Sons Ltd.

Entities:  

Keywords:  abnormal uterine bleeding; bleeding disorders; comprehensive care; heavy menstrual bleeding

Year:  2016        PMID: 26822547     DOI: 10.1111/hae.12836

Source DB:  PubMed          Journal:  Haemophilia        ISSN: 1351-8216            Impact factor:   4.287


  8 in total

Review 1.  Evaluation and management of heavy menstrual bleeding in adolescents: the role of the hematologist.

Authors:  Sarah H O'Brien
Journal:  Hematology Am Soc Hematol Educ Program       Date:  2018-11-30

Review 2.  Abnormal Uterine Bleeding in Young Women with Blood Disorders.

Authors:  Kathryn E Dickerson; Neethu M Menon; Ayesha Zia
Journal:  Pediatr Clin North Am       Date:  2018-06       Impact factor: 3.278

Review 3.  Systems-based hematology: highlighting successes and next steps.

Authors:  Jori E May; Patrick C Irelan; Kailee Boedeker; Emily Cahill; Steven Fein; David A Garcia; Lisa K Hicks; Janice Lawson; Ming Y Lim; Colleen T Morton; Anita Rajasekhar; Satish Shanbhag; Marc S Zumberg; Robert M Plovnick; Nathan T Connell
Journal:  Blood Adv       Date:  2020-09-22

4.  "If I wasn't a girl": Experiences of adolescent girls with heavy menstrual bleeding and inherited bleeding disorders.

Authors:  Mackenzie Parker; Maria Hannah; Ayesha Zia
Journal:  Res Pract Thromb Haemost       Date:  2022-05-30

5.  Utility of a screening tool for haemostatic defects in a multicentre cohort of adolescents with heavy menstrual bleeding.

Authors:  Ayesha Zia; Joseph Stanek; Myra Christian-Rancy; Sanjay P Ahuja; Stephanie Savelli; Sarah H O'Brien
Journal:  Haemophilia       Date:  2018-09-12       Impact factor: 4.287

6.  Bleeding patterns in patients before and after diagnosis of von Willebrand disease: Analysis of a US medical claims database.

Authors:  Jonathan C Roberts; Lynn M Malec; Imrran Halari; Sarah A Hale; Abiola Oladapo; Robert F Sidonio
Journal:  Haemophilia       Date:  2021-11-10       Impact factor: 4.263

7.  Potential Undiagnosed VWD Or Other Mucocutaneous Bleeding Disorder Cases Estimated From Private Medical Insurance Claims.

Authors:  Robert F Sidonio; Ayesha Zia; Dana Fallaize
Journal:  J Blood Med       Date:  2020-01-06

8.  Bleeding disorders in adolescents with heavy menstrual bleeding in a multicenter prospective US cohort.

Authors:  Ayesha Zia; Shilpa Jain; Peter Kouides; Song Zhang; Ang Gao; Niavana Salas; May Lau; Ellen Wilson; Nicole DeSimone; Ravi Sarode
Journal:  Haematologica       Date:  2019-10-17       Impact factor: 9.941

  8 in total

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