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o address family history collection, interpretation, and application in busy primary care practices, NCHPEG has collaborated collaborating with the March of Dimes, Genetic Alliance, Harvard Partners, and the Health Resources and Services Administration to develop and evaluate a novel family history tool that focuses on prenatal and neonatal health. The tool helps to improve health outcomes for the female patient, fetus, and family by providing clinical decision support and educational resources for risk assessment based on family history. A set of screenshots and an overview of the module can be reviewed via this downloadable PPT.
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Family Health History and Clinical Decision Support in Primary Care
Family History for Prenatal Providers
YouOrganization
For whoMM DD, 2013
VISULIZE ACTIVITIES WITH TIMELINES!Objectives
1. Describe the Pregnancy & Health Profile tool
2. Discuss implementation in four clinical settings
3. Recognize goals and features of pediatric family history tool
Work presented is funded through HRSA cooperative agreement #U33MC12786
VISULIZE ACTIVITIES WITH TIMELINES!Historical Perspective
• Need identified through: • HRSA, SACHDNC, ACOG Genetics Committee
• 2008 HRSA Funding Announcement: “Family History for Prenatal Providers”• Integrate genetics and NBS information into a health
history • Assist genetic clinical decision-making• Educate the patient and the provider• Address the life-course of the female patient
VISULIZE ACTIVITIES WITH TIMELINES!Family History for Prenatal Providers
Improve identification of women and babies at risk of developing genetic disease
Develop and evaluate a family history and genetic screening tool for primary-care prenatal providers
The Pregnancy & Health Profile
VISULIZE ACTIVITIES WITH TIMELINES!Project Partners
NCHPEG• Joan Scott• Emily Edelman
Harvard Partners/ NWH/MGH• Kevin Hughes• Brian Drohan
Genetic Alliance• James O’Leary• Vaughn Edelson
HRSA• Lisa Vasquez
March of Dimes• Siobhan Dolan• Bruce Lin
Evaluator • Teresa Doksum
Eileen Beard, C.N.M., F.N.P. Senior Practice Advisor, American College of Nurse-Midwives
Robin Bennett, M.S., C.G.C. UWMC Medical Genetics Clinic Mildred Cho, Ph.D. Associate Director, Stanford Center for Biomedical Ethics Alan Fleischman, M.D. (Committee Chairman)Senior Vice President and Medical Director, March of Dimes Susan Gross, M.D.Professor and Medical Genetics Program Director, North Bronx
Healthcare Network, Jacobi Medical Center James Haddow, M.D. Professor, Pathology & Laboratory Medicine, Brown University Lorrie Kline Kaplan Executive Director, American College of Nurse-Midwives Celia Kaye, M.D., Ph.D. Assistant Professor of Pediatrics, University of Texas, Health
Science Center Thomas Musci, M.D. Director, Medical Affairs; Predictive Health at Novartis
Diagnostics, Inc.
Nicole PrattPatient Advocate
Nancy Rose, M.D. Director, Reproductive Genetics, Intermountain Health Care;
University of Utah
Catherine Ruhl, C.N.M., M.S. Associate Director, Association of Women’s Health Obstetric
and Neonatal Nurses (AWHONN)
Louisa Stark, Ph.D.Director, Genetic Science Learning Center, University of Utah
Jackie Tillett, N.D., C.N.M., F.A.C.N.M. Director, Midwifery and Wellness Center, Aurora Sinai
Medical Center; Assistant Professor, University of Wisconsin; American College of Nurse-Midwives
Alan Zuckerman, M.D.Assistant Professor, Department of Pediatrics, Georgetown
University Hospital Debra Hawks, M.P.H.Senior Director of Practice, ACOG
Perry Pugno, M.D., M.P.H.Director of Medical Education, AAFP
Advisory Committee
• Helps the busy primary care provider translate family history data for clinical care
• Engages the patient as an active participant • Provides a personalized clinical encounter withClinical decision supportProvider and patient materials• Freeware
Pregnancy & Health Profile: A Screening and Risk Assessment Tool
VISULIZE ACTIVITIES WITH TIMELINES! 27 Conditions with Decision Support
Mendelian Congenital•Ashkenazi Jewish-associated diseases•Cystic fibrosis•Fragile X•Sickle cell disease•Spinal Muscular Atrophy •Tay-Sachs•Thalassemia
Mendelian Pregnancy & Lifespan
•Thrombophilia •Hemophilia, von Willebrand•HBOC•Lynch
Complex Congenital•Consanguinity •Hearing loss, congenital and early-onset (<40 y)•Vision loss, congenital and early-onset (<40 y)•Congenital heart defect•Neural tube defect•ID•Autism
Complex Pregnancy & Lifespan•Cardiovascular Disease•Diabetes•Epilepsy•Hypertension•Mental Illness•Osteoporosis•Pre-term birth•Recurrent pregnancy loss (2+)•Sudden death
VISULIZE ACTIVITIES WITH TIMELINES!Clinical Decision Support Algorithms
ObjectiveAdapt professional society recommendations into machine-readable algorithms
Methods•Project directors and PIs assessed literature and guidelines•Proposed risk assessment algorithms and messaging appropriate for the first prenatal visit•External review among advisory committee and other content experts•Formative evaluation with primary care prenatal providers
Example Clinical Decision Support
CONSIDERATIONS FOR THE PATIENT
ACTIONSYNDROME/ CONDITION
REASON
Refer for genetic counseling and risk assessment for family history of autism and intellectual disability.
AutismPatient reports a family history of autism.
Consider Fragile X carrier testing for your patient, and referral to genetic counseling for complete Fragile X family history risk assessment.
Fragile XPatient reports a family history of autism.
VISULIZE ACTIVITIES WITH TIMELINES!How it Works
Waiting Room Clinical Encounter
(1) Patient enters history(1) Patient enters history
(2) Electronic risk assessment (2) Electronic risk assessment
(3) Clinician reviews report(3) Clinician reviews report
(4) Shared decision making (4) Shared decision making
(5) Patient education(5) Patient education
(6) Clinician documentation(6) Clinician documentation
Images attributed as follows: Doctor designed by Andrew McKinley, from The Noun Project; Printer designed by James Fenton from The Noun Project.
Demonstration
Letters to the Patient
Implementation & Evaluation
Overview of Summative Evaluation DesignSource of Data Outcome Method
AdministratorsApproach to integrating toolChallenges with implementationLevel of effort and resources needed for
integration
Interview
PatientsTime required for patients to use toolPatient satisfaction with tool Post-tool survey
Providers
KnowledgeConfidence using family historySatisfaction using tool, including efficiencyPerceived usefulness of tool
Pre-tool survey
Post-tool survey
Provider behavior
Provider practices regarding guidelines for:• discussion, counseling, education;• referrals to specialists; and• screening tests offered and ordered
Chart audits
VISULIZE ACTIVITIES WITH TIMELINES!Clinical Implementation – 4 sites, > 600 patients, 80 providers
Maine-Dartmouth Family Medicine Residency
Family Medicine Practice, Academic
Augusta & Fairfield, ME Bronx, NY
Montefiore Medical Center Comprehensive Family Care Center
Community Health Center, Academic
Asheville, NC
Mountain Area Health Education Center
State Area Health Education Center, Academic
Clearvista practice, Community Health Network
OB Practice, Community Hospital System
Indianapolis, IN
Patients
Unpublished Data: Confidential
Findings fromPatient Feedback Survey
n=513/618 (83%) total across 4 sites
VISULIZE ACTIVITIES WITH TIMELINES!Conclusions from Patient Data
1. Tool tested in diverse patient population 2. Acceptability and usability high across
populations 3. Patients comfortable entering personal and
family history info into computer4. Equally willing to provide info in computer
tool as compared to verbally to provider5. Computer tool more desirable than paper
tool
Unpublished Data: Do not cite or share without permission from NCHPEG
Providers
Unpublished Data: Confidential
Findings fromProvider Feedback Surveyn = 25 / 82 (30% response)
VISULIZE ACTIVITIES WITH TIMELINES!Conclusions from Provider Data
1. Confidence in identifying & managing pts at-risk increased
2. Value in questionnaire and fact sheets for patient engagement, education
3. Mixed perceptions of impact on work flow and practice4. Mixed perceptions of value of clinical decision support5. Report needs to be shorter & tailored to meet providers’
needs
Unpublished Data: Do not cite or share without permission from NCHPEG
Performance Measures
Findings FromPatient Medical Records & Tool
n = 618 total across 4 sites
Unpublished Data: Confidential
VISULIZE ACTIVITIES WITH TIMELINES!Genetic Performance Measures Assessed through pre- and post-chart audits
1% of patients that have a documented 3-generation family history. 3-Generation Definition: At least one member of three generations documented. For example: the patient, her children, and her parents.(ACOG. Obstet Gynecol. 2011;117:747-750)
2% of patients and FOBs that have documented ethnicity and ancestry data.(ACOG. Obstet Gynecol. 2011;117:747-750)
3% of patients for whom there is documented discussion, counseling, or education about cystic fibrosis carrier screening. (ACOG. Obstet Gynecol. 2011; 117:1028-31)
4% of African-American patients for who there is documented discussion, counseling, or education about SCA carrier screening.(ACOG. Obstet Gynecol. 2007; 109:229-37)
5% of Asian-American patients for who there is documented discussion, counseling, or education about thalassemia carrier screening.(ACOG. Obstet Gynecol. 2007; 109:229-37)
VISULIZE ACTIVITIES WITH TIMELINES!
Conclusions from Performance Measures
1. Tool collects greater detail and higher quality family history information • Especially FOB and ancestry info
2. Cystic fibrosis screening rates similar pre and post, improved at one site
3. Additional analyses planned to further study outcomes
Unpublished Data: Do not cite or share without permission from NCHPEG
VISULIZE ACTIVITIES WITH TIMELINES! Summary
1. Clinical implementation Identified process and recommendations for clinical implementation
2. Patient feedback High patient satisfaction
3. Provider outcomes Value patient engagement and education Improvements in confidence Mixed provider feedback about decision support
Unpublished Data: Do not cite or share without permission from NCHPEG
VISULIZE ACTIVITIES WITH TIMELINES! Next Steps
1. Disseminate prenatal tool for free download http://www.hughesriskapps.net2. Continue to study the impact of the tool in a
prenatal population 3. Develop adaptations for additional clinical
settings (e.g., pediatric)4. Develop web-based and non-English language
versions
Unpubished Data: Do not cite or share without permission from NCHPEG
VISULIZE ACTIVITIES WITH TIMELINES!Family History for Pediatric Providers
• Partnership with AAP Genetic in Primary Care Institute
• 1-year project• HRSA funded• Develop a pediatric family history tool • Adaptation of Pregnancy & Health Profile
VISULIZE ACTIVITIES WITH TIMELINES! ~50 Conditions with Decision Support
Mendelian•Hemophilia•Sickle cell disease•Thalassemia•Thrombophilia•Von Willebrand disease•CF•Fragile X
VISULIZE ACTIVITIES WITH TIMELINES!Family History for Pediatric Providers
• Advisory group established• Conditions selected• Questionnaire developed • Programming underway• Pilot testing this summer• Tool released September 2013