PreNatal Module of HughesRiskApps
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This document describes several family history tools developed to assist primary care providers. It discusses the Pregnancy & Health Profile tool, which was implemented in four clinical settings and evaluated with positive feedback from patients and providers. It also describes the development of a pediatric family history tool in partnership with the AAP to launch in September 2013. Both tools integrate family history data with clinical decision support to help identify genetic risks and improve patient care.
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PreNatal Module of HughesRiskApps
- 1. Family Health History and Clinical Decision Support in Primary Care Family History for Prenatal Providers You Organization For who MM DD, 2013
- 2. 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
- 3. VISULIZE ACTIVITIES WITH TIMELINES!Historical Perspective ⢠Need identified through: ⢠HRSA, SACHDNC, ACOG Genetics Committee ⢠2008 HRSA Funding Announcement: âFamily History for Prenatal Providersâ ⢠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
- 4. 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
- 5. VISULIZE ACTIVITIES WITH TIMELINES!Project Partners NCHPEG ⢠Joan Scott ⢠Emily Edelman Harvard Partners/ NWH/MGH ⢠Kevin Hughes ⢠Brian Drohan Genetic Alliance ⢠James OâLeary ⢠Vaughn Edelson HRSA ⢠Lisa Vasquez March of Dimes ⢠Siobhan Dolan ⢠Bruce Lin Evaluator ⢠Teresa Doksum
- 6. 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 Pratt Patient 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 Womenâs 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
- 7. ⢠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 with ď Clinical decision support ď Provider and patient materials ⢠Freeware Pregnancy & Health Profile: A Screening and Risk Assessment Tool
- 8. VISULIZE ACTIVITIES WITH TIMELINES!27 Conditions with Decision Support Mendelian Congenital â˘Ashkenazi Jewish-associated diseases â˘Cystic fibrosis â˘Fragile X â˘Sickle cell disease â˘Spinal Muscular Atrophy â˘Tay-Sachs â˘Thalassemia Mendelian Pregnancy & Lifespan â˘Thrombophilia â˘Hemophilia, von Willebrand â˘HBOC â˘Lynch Complex Congenital â˘Consanguinity â˘Hearing loss, congenital and early-onset (<40 y) â˘Vision loss, congenital and early-onset (<40 y) â˘Congenital heart defect â˘Neural tube defect â˘ID â˘Autism Complex Pregnancy & Lifespan â˘Cardiovascular Disease â˘Diabetes â˘Epilepsy â˘Hypertension â˘Mental Illness â˘Osteoporosis â˘Pre-term birth â˘Recurrent pregnancy loss (2+) â˘Sudden death
- 9. VISULIZE ACTIVITIES WITH TIMELINES!Clinical Decision Support Algorithms Objective Adapt professional society recommendations into machine- readable algorithms Methods â˘Project directors and PIs assessed literature and guidelines â˘Proposed risk assessment algorithms and messaging appropriate for the first prenatal visit â˘External review among advisory committee and other content experts â˘Formative evaluation with primary care prenatal providers
- 10. Example Clinical Decision Support CONSIDERATIONS FOR THE PATIENT ACTION SYNDROME/ CONDITION REASON Refer for genetic counseling and risk assessment for family history of autism and intellectual disability. Autism Patient 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 X Patient reports a family history of autism.
- 11. 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.
- 12. Demonstration
- 115. Letters to the Patient
- 117. Overview of Summative Evaluation Design Source of Data Outcome Method Administrators ďźApproach to integrating tool ďźChallenges with implementation ďźLevel of effort and resources needed for integration Interview Patients ďźTime required for patients to use tool ďźPatient satisfaction with tool Post-tool survey Providers ďźKnowledge ďźConfidence using family history ďźSatisfaction using tool, including efficiency ďźPerceived usefulness of tool Pre-tool survey Post-tool survey Provider behavior ďźProvider practices regarding guidelines for: ⢠discussion, counseling, education; ⢠referrals to specialists; and ⢠screening tests offered and ordered Chart audits
- 118. VISULIZE ACTIVITIES WITH TIMELINES!Clinical Implementation â 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
- 119. Patients Unpublished Data: Confidential Findings from Patient Feedback Survey n=513/618 (83%) total across 4 sites
- 120. 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 computer 4. Equally willing to provide info in computer tool as compared to verbally to provider 5. Computer tool more desirable than paper tool Unpublished Data: Do not cite or share without permission from NCHPEG
- 121. Providers Unpublished Data: Confidential Findings from Provider Feedback Survey n = 25 / 82 (30% response)
- 122. 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 practice 4. Mixed perceptions of value of clinical decision support 5. Report needs to be shorter & tailored to meet providersâ needs Unpublished Data: Do not cite or share without permission from NCHPEG
- 123. Performance Measures Findings From Patient Medical Records & Tool n = 618 total across 4 sites Unpublished Data: Confidential
- 124. 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)
- 125. VISULIZE ACTIVITIES WITH TIMELINES! Conclusions from Performance Measures 1. Tool collects greater detail and higher quality family history information ⢠Especially FOB and ancestry info 1. Cystic fibrosis screening rates similar pre and post, improved at one site 2. Additional analyses planned to further study outcomes Unpublished Data: Do not cite or share without permission from NCHPEG
- 126. VISULIZE ACTIVITIES WITH TIMELINES! Summary 1. Clinical implementation ď Identified process and recommendations for clinical implementation 1. Patient feedback ď High patient satisfaction 1. Provider outcomes ď Value patient engagement and education ď Improvements in confidence ď Mixed provider feedback about decision support Unpublished Data: Do not cite or share without permission from NCHPEG
- 127. VISULIZE ACTIVITIES WITH TIMELINES! Next Steps 1. Disseminate prenatal tool for free download http://www.hughesriskapps.net 2. 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
- 128. 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
- 129. VISULIZE ACTIVITIES WITH TIMELINES!~50 Conditions with Decision Support Mendelian â˘Hemophilia â˘Sickle cell disease â˘Thalassemia â˘Thrombophilia â˘Von Willebrand disease â˘CF â˘Fragile X
- 130. 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
Hinweis der Redaktion
- Source: EE to Hopkins 4/23/13. No data For Brian Drohan, MGH 4/29/13 request
- Need for this program was identified by leadership in HRSA, SACHDNC, and ACOG Michele Puryear and Penny Kyler were instrumental in the development of this project Saw a need to improve the application of the genetic family history in the prenatal setting and throughout the life cycle of the female patient. In particular, HRSA wished to support the primary care disciplines of family practice, obstetrics and gynecology, and nursing that have a duty to understand the content needed and processes involved with obtaining a FHH. In 2008, HRSA issued a RFA for the funding announcement âFamily History for Prenatal Providersâ with a call to: Create a tool for women that integrate genetics, including newborn screening information into a health history. Provide education for the patient and education for the provider, assist in decision making about genetic risks and management Address life-course of female patient
- Tool is currently software-based but we are exploring web-based options
- Methods included: identification of the criteria to determine inclusion and exclusion Review of professional society guidelines, literature, and existing prenatal screening and intake forms Manuscript submitted that describes the process Algorithms were developed based on professional society guidelines and reviewed by external clinical experts List both single gene and complex conditions Impact fetus, pregnancy, and future health of the woman and family For the sake of time, I am not going to address the process by which we developed the tool any more than I already have. I, or members of our project team, would be happy to discuss later: details about selection of conditions, algorithm development, programming architecture, and the formative evaluation we conducted to pilot the tool with providers and patients before clinical implementation. 27 conditions
- (1) The patient completes the electronic questionnaire on a tablet computer in the waiting room before the first prenatal appointment. (2) Patient-entered data is wirelessly transmitted to the PHP tool database and automated risk assessment is performed. (3) The clinician prints and reviews the Pregnancy Health Profile report that includes genetic clinical decision support based on patient-entered data and a pedigree. The clinician reviews point-of-care educational materials, also generated with the report. (4) The patient and clinician discuss her risk assessment and determine a management plan during the clinical encounter. (5) Patient receives targeted and personalized educational materials. (6) The clinician documents the encounter and uploads the Pregnancy Health Profile Report into the paper or electronic medical record. Patient history can be updated and risk assessment re-calculated as needed. Images attributed as follows: Doctor designed by Andrew McKinley, from The Noun Project; Printer designed by James Fenton from The Noun Project.
- Over 600 patients and about 80 providers used the tool during the pilot period
- Quantitative data were entered into a SPSS database and analyzed using descriptive statistics, Fisher âs exact test, and paired t-tests. Multivariate analysis was done using logistic regression.
- High response rate (83%)
- Assessed baseline, immediate response, and final knowledge, attitudes, usability. 26 represents baseline AND final AND self report of using the tool w patient. Workflow / Time Accuracy Impact on rapport CDS
- 500 total pre tool
- #3: Additional analyses include studying the pre-tool to post-tool changes in documentation of counseling and screening regarding hemoglobinopathies as well as additional prenatal outcomes. We have a supplement from HRSA to further study this data set and can look at a number of different rare and common conditions.
- Clinical implementation Identified process and recommendations for clinical implementation Understand what kind, how much resources it takes to implement tool into practice Patient satisfaction High patient satisfaction Providers and external stakeholders were concerned about patients â ability to complete questionnaire, use a tablet computer, and whether or not there would be discomfort regarding privacy. Across the board⌠Provider satisfaction Mixed provider feedback Saw value in engaging patients to provide this information, many providers liked having this information collected in advance of the appointment. Liked the patient education materials. The CDS improved providers â confidence in identifying & managing pts at increased risk Providers concerned about redundancy within the report, between other aspects of the visit. Report was unwieldy, too long, too much paper Perception that CDS over-indicated referrals (could be due to not printing/using provider fact sheets) Report needs to be shortened and tailored to providers â needs. Ideally, there would be multiple options for customization to address different needs and clinic characteristics. Utility Tool is comparable or improves performance for family history collection and cystic fibrosis counseling. Will be assessing additional PM in the coming weeks
- [ask for feedback on #2]
- Methods included: identification of the criteria to determine inclusion and exclusion Review of professional society guidelines, literature, and existing prenatal screening and intake forms Manuscript submitted that describes the process Algorithms were developed based on professional society guidelines and reviewed by external clinical experts List both single gene and complex conditions Impact fetus, pregnancy, and future health of the woman and family For the sake of time, I am not going to address the process by which we developed the tool any more than I already have. I, or members of our project team, would be happy to discuss later: details about selection of conditions, algorithm development, programming architecture, and the formative evaluation we conducted to pilot the tool with providers and patients before clinical implementation. 27 conditions