dlideveloping cli i icli nicians of elle xcellence for ...€¦ · ‐pph james ah, manco‐johnson...

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D l i Cli i i f E ll fDeveloping Clinicians of Excellence for Young Women with Bleeding Disorders; the Core of the Multidisciplinary Team

April 7, 2016

Faculty

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Vision:Allwomenandgirlswithblooddisordersarecorrectlydiagnosedandoptimallytreatedandmanagedateverylifestage

yJennifer E. Dietrich, MD, MSc

Sarah O’Brien, MD, MSc

• Educate key healthcare providers about the consequences and effects of blood disorders at every life stage

About the Foundation

– Pediatricians– Family Practice providers– Internal Medicine physicians– Obstetricians– Gynecologists– Hematologists/Oncologists– Emergency Medicine physicians– Geriatricians– Nurses– Social Workers– Other healthcare providers

• Translate and disseminate information and research to providers, thereby benefiting women and girls

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Mission

The Foundation for Women & Girls with Blood Disorders

seeks to ensure that all women and girls with

blood disorders are correctly diagnosed and optimally treated and managed at

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treated and managed at every life stage.

Faculty:

Jennifer E. Dietrich MD, MSc

Associate Professor

Department of Obstetrics and Gynecology

Department of Pediatrics

G

Obstetrics & Gynecology, Pediatrics

Division Director Pediatric and Adolescent Gynecology

Fellowship Director Pediatric and Adolescent Gynecology

CME Director Department of OB/GYN and

FWGBD Secretary of the Board of Directors and WGBD LAN Member

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Faculty:Sarah O’Brien, MD, MSc

Associate Professor of Pediatrics,

Division of Hematology/Oncology,

The Ohio State University

Investigator, Center for Innovation in Pediatric Practice,

The Research Institute at Nationwide Children’s Hospital and

FWGBD Education Council and WGBD LAN Member

………………..……………………………………………………………………………………………………………………………………..

Disclosures

Both speakers declare none relevant to this topic.

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Pre-Test Question 1

What percent of women experience bleeding in their lifetime?

1. 45%

12%2. 12%

3. 5%

4. 80%

Pre-Test Question 2

Which of the following is concerning for a heavy menstrual cycle?

1. Soaking one pad/day

2. Bleeding for 6 days

Bl d l f t th 803. Blood loss of greater than 80 cc

4. Passing clots 1 cm in diameter

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Pre-Test Question 3

All of the following are important building blocks toward developing a multidisciplinary clinic except…

1.Collaborative care

2.Awareness

N d t3.Needs assessment

4.Developing separate clinics

Objectives

1. Describe how the interdisciplinary team can care for women and girls with bleeding disorders, a career path based on public health needp

2. Discuss the importance of a multidisciplinary team in the diagnosis of common and less common bleeding disorders

3. Discuss the importance of a multidisciplinary team in the management of common and less common bleeding disorders

4. Apply strategies from interesting cases that present challenges and opportunities for improved outcomes usingchallenges and opportunities for improved outcomes using a team approach

5. Describe and apply a framework for providers interested in this area to become involved in the care of young women and girls with bleeding disorders

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Overview

Why put a clinic like this together?

Previous experience detailed.

What patients think?

What providers think?

Have a proposed plan.

Your input is valued and needed.

A FEW CASES…

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xxx00.#####.ppt 3/28/2016 2:29:59 PMObstetrics & Gynecology, Pediatrics

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Case 1

A 13-yo non-sexually active female presents to your office with a history of heavy menstrual cycles for the past 6 months. Menarche occurred at 11 years of age. Her cycles y g ywere initially light and irregular. Now her cycles are monthly.

She is a gymnast and has been very active until 1 year ago, when she sprained her wrist. Since then she has not been as active and has gained about 5 pounds since last year. Her most recent cycle lasted 10 days and she has noticed

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Her most recent cycle lasted 10 days and she has noticed that each month with her cycles she uses 10 super pads on her heaviest days. She does have easy bruising that she thought was just her “clumsiness.”

Case 1 continued…•You initiate a bleeding workup because you attended a workshop at NASPAG last year and learned more about these warning signs as well as initial first-tier tests to send

•Work-up reveals a VWF level of 32 and Factor 8 level of 40. Her hemoglobin in clinic is 9.6 g/dL. She also has a negative pregnancy test and normal TSH

•You plan to start combined hormonal pills and to use a

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You plan to start combined hormonal pills and to use a taper to control her current menstrual bleeding

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Case 1 continued…

•You send her to hematology clinic for further evaluation. They confirm this condition.

•Now she will need to see you for gynecology visits to manage hormones and hematology for additional visits to discuss bleeding risks and for ongoing assessment of the condition over time

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Case 2

•A 12-yo female presents to the ER who has Glanzmann's Thrombasthenia. She presents with an expanding hemorrhagic cyst and hemodynamic instability. Due to the g y y yurgency of surgery to coagulate and prevent further expansion of this cyst, both gynecology and hematology are consulted.

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Case 2 continued…

•Hematology goals: replace platelets preoperatively to aid in bleeding control and reassess bleeding control post operativelyp y

•Gynecology goals: stop the source of bleeding, which is the hemorrhagic cyst; use a minimally invasive approach; avoid contributing to more bleeding through use of electrocautery, minimally invasive techniques and use of topical hemostatic agents beyond systemic agents that hematology will

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agents beyond systemic agents that hematology will recommend

Considerations in Gynecologic Surgery

Sources for hemorrhage‐Failure to control active arterial/venous bleeding

‐Failed clotting functionFailed clotting function

•Problem with vasoconstriction

•Platelet activation inadequate

•Coagulation cascade events (intrinsic and extrinsic)

Choices to augment hemostasis

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‐Thermal

‐Chemical

‐Mechanical

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Advances in Gynecologic Surgery

•Minimally invasive techniques such as laparoscopy and hysteroscopyand hysteroscopy

‐ less potential blood loss

•Use of cautery

U f h t ti t

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•Use of hemostatic agents

Parenterally Administered Chemical Options

- Replace or stimulate blood components

•Platelets

F t ifi l t•Factor specific replacement

•DDAVP

- Halt fibrinolysis

•Tranexamic acid

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•Aminocaproic acid

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Combined Clinical

A Multidisciplinary Clinic for Bleeding and Clotting Disorders in Young Women

Solution:

Multidisciplinary Clinic for WGBD

Care

Why?


Creating the “case” for a multidisciplinary clinic…

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•Population statistics in the US and Canada have demonstrated growth even in the last 5 years:

Why?

•~28% of these individuals are children <18 years of age and half of these are females

Population (millions) 2010 2015

United States 309.3 320.1

Canada 35.1 35.7

these are females

•MAJOR tertiary referral centers locally, regionally, nationally and even internationally are possible locales where a clinic can be initiated to reach patients in need of this care

Bleeding disorders are common, period!


Why?

Bleeding disorders affect 20% of women and adolescents with heavy periods (menorrhagia or heavy menstrual bleeding)

OB/GYNs, Pediatricians, Surgeons are going to see g g gfemale patients with this condition at some point during their practice

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Heavy Menstrual Bleeding

• Heavy Menstrual Bleeding (HMB)– >80 ml of blood loss per menstrual cycle>80 ml of blood loss per menstrual cycle

• Indicators of HMB– Soaking through a pad or tampon in 1 hour

– Soaking through bed clothes

– Low ferritin

– Anemia

– PBAC Score > 100

HMB – A Public Health Problem

• 10-15% of women experience HMB during their lifetime– Survey of 1019 teenagers in Sweden, 37% reported heavy

menstrual periodsmenstrual periods

• Heavy menstrual bleeding is most common symptom in women with VWD– Occurs in ~80-90% of patients

• Prevalence of undiagnosed bleeding disorders in women with HMB is highwith HMB is high– Estimates range from 5-20%

– Delay in diagnosis (4 years, 16 years?)

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HMB Affects Quality of Life

• Females 15-17 years of age at inner city high school in Michiganhigh school in Michigan– 45 of 240 questionnaires returned

– 56% had a PBAC score >100

– PBAC score >100 was associated with • poorer QOL

d d i l ti iti d t l l• decreased social activities and travel plans

• increased school absenteeism

Study n Setting % VWD % PFD

Prevalence of Bleeding Disorders in Teens with HMB

Mikhail (2006) 61 Hematology Clinic 36 7

Jayasinghe (2005) 106 Inpatient/Outpatient 5 4

Philipp (2004) 25

46

71

4

4

3

44

NA

8

Primary Care Clinic

Inpatient

ER, and Inpatient

Kanbur (2002)

Bevan (2001)

25

46

59

8

5

5

NA

NA

2

Inpatient

Inpatient

Inpatient

Oral (2001)

Smith (1998)

Claessens (1981)

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Warning Signs of a Blood Disorder

• One or more:

H t l

• Two or more:

E i t i‐Heavy menstrual bleeding confirmed by history

‐Bleeding during surgery

‐Bleeding during

‐Epistaxis

‐Easy bruising

‐Gingival bleeding

‐Family history of bleeding disorder(s)

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dental procedure

‐PPH James AH, Manco‐Johnson MJ, Yawn BP, Dietrich JE, Nichols WL. Von Willebrand disease: key points from the 2008 National Heart, Lung, and Blood Institute Guidelines. Obstet Gynecol. 2009 Sep; 114(3):674‐8.

James AH, et al. Evaluation and management of acute menorrhagia in women with and without underlying bleeding disorders: consensus from an international expert panel. Eur J Obstet Gynecol Reprod Biol. 2011 Oct;158(2):124‐34.

Warning Signs from the Menstrual History

Menstrual History:

The Menstrual

Qualitative Quantitative

Menses lasting th 7 d

>80 ml blood lossThe Menstrual Cycle is a VITAL SIGN

more than 7 days

Changing pad or tampon more than hourly

Clots greater than 1 inch in diameter

PBAC score >100

Soaking through clothes

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clothes

American Academy of Pediatrics Committee on Adolescence; American College of Obstetricians and Gynecologists Committee on Adolescent Health Care, Diaz A, Laufer MR, Breech LL. Menstruation in girls and adolescents: using the menstrual cycle as a vital sign. Pediatrics. 2006 Nov; 118(5):2245‐50.

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Combined Clinical


Awareness


Care

Organizational Awareness / ongoing Education

Organizational Awareness

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Barriers to Hematologic Referral

• Patients – Don’t recognize their menses as abnormal

• Gynecologists– Many other causes of bleeding (anovulation, anatomic

problem)

– Spectrum of severity (mild bleeding may be missed)

– Most bleeding can be managed using hormonal or surgical therapytherapy

• Hematologists– Recognized shortage of hematologists with expertise in

hemostasis and thrombosis

We Need to Change the Culture

Menorrhagia and Bleeding Disorder Education

‐Survey of 241 OB residency programs:y y p g

•Reported 9 hours of training in medical management of menorrhagia their intern year, 11 hours 2nd, 3rd, and 4th years

•67% reported training in menorrhagia and bleeding disorders was sufficient

•Less than 25% reported they would send tests for specific bleeding disorders

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g

•Inconsistently asked appropriate questions regarding bleeding history

Dietrich J, Tran X, Giardino A. Bleeding disorder education in obstetrics and gynecology residency training: a national survey. J Pediatr Adolesc Gynecol. 2010; Epub.

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Combined Clinical


Addressing Needs


Clinical Care

Organizational Awareness / Ongoing Education

Assessment of Patient Needs and

Clinic Outcomes

Addressing the numbers…

Hemophilia Treatment Centers Number

United States 135

Canada 31

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Worldwide* > 400 and growing

*this number changes, but the World Federation of Hemophilia keeps this up to date

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How we addressed the numbers at Texas Children’s Hospital: a look back

Disorder MenorrhagiaDisorder Menorrhagia

Diagnosis Codes Included (ICD9 at that time)

626.2, 626.3, 626.6

Number diagnosed/treated in 2007 at TCH (in and out patient) 292

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TCH (in and out patient)Number identified in Hematology clinic NA

Combined Clinical Care


Solution


Care


Assessment of Patient and Clinic

Outcomes

Build a Collaborative Care Team

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What Was Envisioned?

Multidisciplinary Clinic involving Pediatric Hematology Pediatric Gynecology AdolescentHematology, Pediatric Gynecology, Adolescent Medicine, Social Work

• One clinic, same setting

‐Patient has access to services at the same time

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THE YOUNG WOMEN’S BLEEDING DISORDER CLINIC (YWDBC)

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DOB: May 30, 2009

BP5

BP5 Do we want to keep a similar slide and have it include the birthdates of both clinics?Basement PC, 2/24/2016

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YWBDC TCH Clinic Experience

Multidisciplinary Clinic: Young Women’s Bl di Di d Cli i t TCH

Questions Answers

• WHAT?Bleeding Disorder Clinic at TCH

Patients seen in the gynecology clinic

2 half days/month; 6-8 patients seen/half day session

• WHERE?

• WHEN?

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Billing: Gynecology bills for menorrhagia, Hematology bills for bleeding condition

• HOW?

The Basics at NCH

Questions

• WHO?

Answers

• Adolescent females referred for heavy

• WHAT?

• WHERE?

• WHEN?

• Adolescent females referred for heavy menstrual bleeding

• Multidisciplinary, dual physician clinic

• Gynecology home field, satellite clinic (suburb)

• 1 to 2 Thursday mornings each month

• WHY? • Reduce wait time for diagnosis and management of young women with menorrhagia by providing a “one-stop shopping” clinic experience

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The Team• 2 Physicians

– Hematologist, Adolescent Medicine

• 1 Hematology APN• 1 Hematology APN– Follow-Up Patients

• 1 Nurse Clinician– Referrals, triage, education, phone follow-up

• 1 Social Worker

• 1 Patient Care Assistant– Rooming, vitals, patient flow

• Nutrition when possible…

The Team• 2 Physicians

– Hematologist, Adolescent Medicine

• 1 Hematology APN• 1 Hematology APN– Follow-Up Patients

• 1 Nurse Clinician– Referrals, triage, education, phone follow-up

• 1 Social Worker

• 1 Patient Care Assistant– Rooming, vitals, patient flow

• Nutrition when possible…

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Referrals to the TCH Clinic

Patients were known to either Pediatric Hematology or Pediatric Gynecology and had a diagnosis of a specific bleeding disorder in the presence of gynecologic need (i.e.,bleeding disorder in the presence of gynecologic need (i.e., menorrhagia, ovarian cysts, endometriosis, sexually active, precocious puberty)

Referrals came from the separate gyn and hem clinics and were NOT new patients. The visits at these clinics were intense follow-ups.

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Any new patient visit or potential-for-problem visits first went to the individual clinics for confirmation at which time they would be referred to the multidisciplinary clinic

Referrals at NCH• Referrals come from hematology referrals for

menorrhagia

• Nurse clinician calls family to assess:• Nurse clinician calls family to assess:– Acuity

– Preferred site – downtown or satellite clinic

– Are they already well-established with OB/GYN

• As we’ve grown we now get also get referrals specifically for “Menorrhagia Clinic”specifically for Menorrhagia Clinic

• Our thrombosis RN clinicians send us referrals for contraception consultation for young women with personal or family history of thrombosis

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Combined Clinical Care


Goals



Collaborative Clinical Goals, Translational

Laboratory Research

Assessment of Patient and

Clinic Outcomes

Build a Collaborative Care Team

Clinic Goals

• Use evidence-based guidelines in both gynecologic and hematologic practice in approaching these patients

• Through collaboration, review clinic work flow often, conduct research to contribute to the current body of literature where a research need exists

• Reduce wait time for diagnosis and management of

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Reduce wait time for diagnosis and management of young women with menorrhagia by providing a “one-stop shopping” clinic experience BP6

BP6 This is NCHs primary missionBasement PC, 2/24/2016

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PREVALENCE OF BLEEDING DISORDERS IN ADOLESCENTS WITH HEAVY MENSTRUAL BLEEDING

Rosa Díaz MD, Jennifer Dietrich MD, Donald Mahoney Jr. MD1, Donald L. Yee MD and Lakshmi Venkateswaran MD, ASPHO 2012

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Patient category No. (%)

Total studied 235

Age at presentation

(years)

Median 13 Range 9–17

Type 1 VWD orlow VWF activity

23 (9.5%)

Test RCoF ≤50 IU/dl

RCoF >50 IU/dl

Normal PFA 11 189

Abnorma

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y

Type 1 VWD (RCoF 30 IU/dl)

2

Low VWF (RCoF 30–50 IU/dl)

21

Abnormal PFA 12 23

BP11

BP11 I didn't want to assume which 3 you thought were most important, but I was thinking we could include 3 projects from each clinicBasement PC, 2/24/2016

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•Platelet aggregation abnormalities were present in up to one-third of adolescents with menorrhagia

• Significant platelet aggregation

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abnormalities to 2 or more agonists were present in 16% of adolescents with menorrhagia

Presented at American Society of Hematology annual meeting 2011

Funded by Texas Children’s Hospital’s Pediatric Pilot Award

•N=17 patients •Mean age 14.2 years; range 11.7‐16.7 years •5 completed both arms; 2 each completing the first and second arm• 8 patients withdrawn from the

•7 patients (41%) experienced adverse events that were possibly drug‐related

• 2 on TA (28%; all mild ‐breakthrough bleeding/vomiting, lack of sleep)

Funded by Texas Children s Hospital s Pediatric Pilot Award

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8 patients withdrawn from the study for toxicity / non‐compliance

bleeding/vomiting, lack of sleep) •5 on COCP (62%; 3 mild, 2 severe)•None developed thrombosisPresented at the International Society for Thrombosis

& Haemostasis meeting 2013

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PBAC SCOREQuantifying the PBAC in a pediatric and adolescent gynecology population

Sanchez J, Andrabi S, Bercaw JL, Dietrich JE. Pediatr Hematol Oncol 2012 Aug;29(5):479-84

MENSTRUAL CHARACTERSTICS

GROUP 1Heavy Menses

GROUP 2Normal Menses

GROUP 3Light Menses

AGE AT MENARCHE (years)

11.59 ± 1.56 11.41 ± 1.51 11.78 ± .83

PBAC SCORE 362 136 44

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p value <0.002

Mean

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What Patients Thought …

• Very positive feedback!

Th l d h i t b th id i i it ll• They loved having access to both providers in one visit as all questions could be addressed in one setting

• They liked knowing that if they had questions, they could call either separate clinic for direction since notes and plans were in both clinic charts

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• Less confusion

• Gave them an ability to cope and move forward

What Providers Thought …

• Positive interaction

• “Same-page” thought process

• Patients admitted to either service known to both services in the event problems arise

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both services in the event problems arise

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Some Things to Consider• No-Show or Wrong-Show Patients

– RN calls patients 2 days prior to clinic

Billi li t d• Billing more complicated– Higher billing level due to multidisciplinary clinic

– One bill generated by Hematology

– Adolescent MD gets credit for RVUs

• Unequal clinic workload between MDsF l Ad l M di i F ll ?– Future goal – Adolescent Medicine Fellow?

• Who handles urgent issues outside of clinic?– Hematology RN clinician takes first call

Visits 77

Gross Charges:

Commercial $ 76,663

Medicaid $ 4 159

Do We Make Money?

Medicaid $ 4,159

Medicaid MC $ 21,414

Other $ 1,475

Total Gross Charges $ 103,711

Net Revenue $ 61, 700

Net Revenue % 59.5%

Expenses:

Direct $ 25,661

Indirect $ 18,229

Total Expenses $ 43,890

Net Margin $ 17,810

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The First 18 Months

• 59 new patient referrals

• Age Breakdown: 13

1412

14

16

g10-12 yrs (15%)

13-15 yrs (44%)

16-19 yrs (41%)

• Came From:– Franklin County, OH (41%), surrounding counties (22%),

2

56

13

10 1011

12

0

2

4

6

8

10

12

10 11 12 13 14 15 16 17 18 19

Age, Years

New

Patients

y, ( ), g ( ),far away (37%)

• Referring Clinician: Family Med/Internal Med 42%, Pediatrician 37%, OB/Gyn 14%

BP10

Patients want to resume a “normal” life

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BP10 Ditto - I can update this slide if you like itBasement PC, 2/24/2016

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WGBD Clinics of


Results

Excellence

Centers that have a combined approach are offering guidance to others who are interested in approaching care from a common background where the most common denominator is HMB

WGBDClinicLocations

PORTLAND,ORSpots,DotsandClotsClinicTheHemophiliaCenterat

OregonHealth&ScienceUniversity

COLUMBUS,OH

YoungWomen’sHematologyClinicatDublin

SatelliteclinicofNationwideChildren's

BUFFALO,NYWomen’s&Children’sHospitalofBuffalo

MINNEAPOLIS,MNChildren’sHospitalsandClinicsofMinnesotaCenterforBleeding

&ClottingDisorders

EASTLANSING,MIMSUCenterforBleedingandClottingDisorders

CINCINNATI,OHCincinnatiChildren's

HospitalMedicalCenter

MILWAUKEE,WI(2)MACCFundCenterforCancerandBloodDisorders,Medical

CollegeofWisconsin

UWHealth UWHospitalandClinicsMadison,WI

DETROIT,MIChildren’sHospital

ofMichigan CLEVELAND,OH

LOSANGELES,CAChildren'sHospitalLos

Angeles

SACRAMENTO,CAUCDavisMedicalCenter

IOWACITY,IAIowaHTC

UniversityofIowaChildren’sHospital

PHOENIX,AZPhoenixChildren’sH it l HTC

KNOXVILLE,TNEastTennesseeComprehensive

HemophiliaCenter

INDIANAPOLIS,IN(2)IndianaHemophiliaThrombosis

RileyHospitalforChildren

PITTSBURGH,PA(2)HemophiliaCenterofWesternPA

UniversityofPittsburgh,Children’sHospitalofPittsburgh

NASHVILLE,TN

LOUISVILLE,KYUofLouisvilleHTC

CHICAGO,ILRushUniversity

MedicalCenterHTC

JanetJanMartinHTCUniversityHospitalsHealthSystem

25WGBDCliniclocations

HOUSTON,TXYoungWomen'sBleedingDisorderClinic,TexasChildren'sHospitalBaylorCollegeofMedicine

DALLAS,TXChildren'sMedicalCenter

UniversityofTexasSouthwestern

HospitalHTCATLANTA,GA

ComprehensiveBleedingsDisorderCenteratEmoryUniversity/

Children’sHealthcareofAtlanta

VanderbiltHemostasis‐ThrombosisCenter

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Teamwork!


Summary

Diagnosis & management in adolescents with BDs is not always straightforward

Must keep in mind there are many options for medical management, but a multidisciplinary approach allows better outcomes for patients

Putting together a team can seem to be a challenge at first, but once the team comes together, the synergy eventually makes it an easy transition for providers and patients

Post-Test Question 1

What percent of women experience bleeding in their lifetime?

1. 45%

12%2. 12%

3. 5%

4. 80%

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Which of the following is concerning for a heavy menstrual cycle?

1. Soaking one pad/day

2. Bleeding for 6 days

Bl d l f t th 803. Blood loss of greater than 80 cc

4. Passing clots 1 cm in diameter


All of the following are important building blocks toward developing a multidisciplinary clinic except…

1.Collaborative care

2.Awareness

N d t3.Needs assessment

4.Developing separate clinics

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Thank you Gracias Merci

fwgbd.org

dlideveloping cli i icli nicians of elle xcellence for ...€¦ · ‐pph james ah, manco‐johnson...

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