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 …