Young Women’s Bleeding Disorders Clinic, Texas Children’s Hospital Jennifer Dietrich MD, MSc, FACOG & Lakshmi Srivaths MD WGBD LAN EDUCATION AND CLINIC OF EXCELLENCE WORKSHOP May 18, 2015
Young Women’s Bleeding Disorders Clinic, Texas Children’s Hospital
Jennifer Dietrich MD, MSc, FACOG & Lakshmi Srivaths MD
WGBD LAN EDUCATION AND CLINIC OF
EXCELLENCE WORKSHOP May 18, 2015
Disclosures • Jennifer Dietrich – No disclosures
• Lakshmi Srivaths – No disclosures
Medical Need • Heavy menstrual bleeding (HMB) and bleeding
disorders is an actively evolving area nationally and internationally: – Referrals for HMB in adolescent women is increasing
from PCPs, gynecologists – Bleeding disorders require expert subspecialty care,
collaborative approach between hematology & gynecology
– Thrombophilia in adolescents requiring hormonal therapy requires expert management
Mission • Patient Care:
– to provide the best possible treatment for post-menarchal females with HMB & bleeding disorders, thrombophilia
• Research: – to promote translational, clinical research
collaboration in the area of adolescent HMB and bleeding disorders at TCH and nationally
• Education: – to train future clinicians and scientists in the area of
HMB, bleeding disorders and thrombophilia in young women
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YOUNG WOMEN’S BLEEDING DISORDER CLINIC
TCH
DOB: May 30, 2009
Clinical Division Activities
• Monthly combined clinic • For adolescents with HMB with diagnosed
bleeding disorders • Second monthly clinic added after 2-3 years due
to increasing need • Completed 5th anniversary • One of few adolescent YWBD clinics nationally
completing 5 years
Clinical Division Activities
• Outpatient / inpatient hemostasis • Thrombophilia consultations • ~4-6 patients with HMB and bleeding disorders
seen per YWBD clinic • ~40-50 new patient referrals / year • Thrombophilia referrals included
Clinical Division Activities
• Institutional Collaboration: – Active collaboration between TCH Hematology
and Pediatric & Adolescent Gynecology – Clinical & research collaborations with:
• Hematopathology • Coagulation Lab medicine • Adolescent medicine • Other services
Clinical Division Activities • Active, dedicated clinical support staff
(APPs, PCCs, SW, GC, CP, CLS) – Patient-Oriented Education Programs
• New parent binder • Parents Empowering Parents (PEP) event • First Steps program • New patient care package for boys and
girls – Bleeding Disorders Camps – Regular grants for patient support services
Distribution of Bleeding Disorders
VWD
Low VWF activity
PFD
Thrombocytopenia
Coagulation Factor Def
HHT
PAI-1 deficiency
YWBD clinic team meeting in session
• Photo to be added
APPROACH TO ADOLESCENT WITH HMB
SEEN BY PCP
SEEN BY PCP REFERRED TO
TCH GYNECOLOGY/ HEMATOLOGY
HMB EVALUATION YWBD clinic
referral (Patients with bleeding disorders)
Research Activities • Grants:
– TA vs OCP study - TCH Pediatric Pilot Research Fund Grant
– IPOD study – The CSL Behring Foundation Grant
• Local/national registries: – Menorrhagia Data Registry – Female UDC
• Prospective studies: – IPOD study – TA vs OCP study
• Retrospective reviews, case reports
Research Activities • Abstract presentations in national /
international meetings: – Oral presentations: ASH, NASPAG – Poster presentations: ASPHO, NASPAG, ISTH, WFH
• Publications: • ~3-4 publications/year
– Original articles – Review articles – Case reports
Research Activities • Mentorship/collaboration with hematology and
gynecology fellows / faculty in clinical research projects
• Completed projects: – PFA-100 and HMB – HMB and management/ultrasound findings – VWD Exon 28 polymorphism – HMB and bleeding disorders – Platelet function defects – PBAC score in adolescent HMB
Committee Membership • Foundation for Women & Girls with Blood
Disorders – Jennifer Dietrich (Medical Board) – Lakshmi Srivaths
• Education committee, FWGBD • Learning Action Network, FWGBD • Hemophilia Alliance Foundation
– Crystal Sallans • Lone Star Chapter, Texas
– Aleida Stark
Education Activities • Departmental:
– Clinical practice guidelines: • HMB & bleeding disorders, hormonal therapy and
thrombophilia, Von Willebrand Disease – Weekly case conference, Tumor Board, HAT team
meeting, HAT/GYN team meeting discussions – Lectures at Wednesday CME / Thursday Research
seminar conferences • Institutional faculty • Invited speakers
• Institutional: – Pediatric grand rounds – Adolescent medicine lecture
Education Activities • Regional
– Pediatric Post-graduate symposium – Texas Bleeding Disorders Conference – Lone Star Chapter Women's Program
• National / International: – Symposia / Workshops:
• ASPHO • NASPAG • THSNA
– Moderator, Females with bleeding disorders session, ISTH
– National Hemophilia Foundation
Education Activities
• Community physicians – Pediatric Annual Postgraduate Symposia
presentations – “Smoke/Fire” program on VWD for PCPs by CSL
Behring – “VWD Clinical Meeting Series” held in Houston, TX,
2014 • Patient education
– Online website resources – Small group meetings – Annual talks at Women’s camp, Navasota, Texas
Ongoing / Planned projects • Learning Action Network / FWGBD members
• National collaboration • WGBD-LAN Education and Clinic of Excellence
Workshop • On “Heavy Menstrual Bleeding In Females With
Bleeding Disorders” – May 18-19, 2015 • 1st Girls’ camp
• May 21-24, 2015, Navasota, TX • Doctor on call • Lectures
Program Members • Hematology Physicians
– Rosa Diaz – YoungNa Lee-Kim – Don Mahoney – Mona Shah – Lakshmi Srivaths (Co-Director) – Donald Yee
• Gynecology Physicians – Jennifer Dietrich (Co-Director) – Jennifer Bercaw – Xiomara Santos
• APPs – Susan Kirk – Heather Soni – Jennifer Kurkowski (GYN)
• Heme & GYN Fellows
• Nursing – Aleida Stark – Amelia Sherinski
• Coagulation Medicine – Rocky Hui – Jun Teruya
• Clinical Support Staff – Rachel Beaty – Pharm D – Katie Bergstrom – Genetic counselor – Crystal Sallans – Social Worker
• Research Support – Loretta James – Margaret Nagel – Sheryl Nelson
• Administrative – Barkha Chandwani
It has been AWESOME!
Your experiences, Questions & Concerns …