Can Pediatricians Provide Case-Management and Long-Term Follow-Up Data for their Patients with PCH?

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Tracy Cooper
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1 The PCH Project Long Term Follow-Up of Patients with Primary Congenital Hypothyroidism (PCH) by Primary Care Providers Can Pediatricians Provide Case-Management and Long-Term Follow-Up Data for their Patients with PCH? Emily Bezar, M.A. Public Health Foundation Enterprises Lisa Feuchtbaum, Dr. P.H., M.P.H. California Department of Public Health

2 Background Primary Congenital Hypothyroidism (PCH) is the most common disorder identified in blood spot screening and affects 1 in 1,706 live births in California (CA) Most children with PCH need lifelong treatment Delayed or inappropriate treatment may cause severe neurocognitive disabilities Primary care providers (PCPs) have unique advantages in caring for patients with PCH Little is known about the role of PCPs in PCH-related care

3 Background (cont.) The PCH Project: a three-year grant funded by the Health Resources and Services Administration (HRSA) from August 1 st, 2013 through July 31 st, 2016 Participating states: California and Hawaii Target populations: PCPs and patients with PCH

4 PCH Project: Overall Objectives 1) Assess the willingness and capability of PCPs to provide long-term care for patients with PCH and their needs for PCH-related continuing medical education 2) Evaluate the current case management patterns and clinical outcomes 3) Determine PCPs willingness to obtain informed consent and provide data to the PCH long-term follow-up (LTFU) database 4) Investigate the practicality of providing real time LTFU data by PCPs and identify barriers incurred 5) Improve PCPs knowledge about PCH and increase their capability of providing care for patients with PCH

5 2-Year Long-Term Follow-Up Data Collection Data Collection Period: January 1, 2014 December 31, 2015 Participants: PCPs who indicated interest on a 2014 Survey and eventually agreed to participate in the LTFU data collection, and their patient(s) with PCH The study is encounter-based and purely observational It is a Pilot Study to: 1) Observe the case-management and care-coordination patterns of patients with PCH in a real clinical setting 2) Assess the feasibility of collecting clinical follow-up data from PCPs using the REDCap electronic data-collection platform

6 Three REDCap Electronic Data-Collection Forms Enrollment form (one time) Demographics, diagnostic and treatment history, family history of thyroid disease Follow-Up Visit form (longitudinal) One filled out for every visit: well-child, sick-visit or PCH condition-related visit Laboratory Results form (longitudinal) When new lab results are available

7 Update: Enrollment and Data Collection with REDCap 28 Enrolled Patients 19 Enrolled PCPs 24 with data collected 4 with no data 20 with 4 with approx. 1 lost to PCP 3 ICFs* not 2-years of data 1 year of data withdrawal* yet signed (projected) *Withdrawal due to *Informed institutional IRB issue Consent Forms 3 lost to follow-up 1 determined transient PCH 1 patient New PCP unknown 2 patients Change of PCP practice: new PCP declined to continue in study

8 Characteristics of Patients With Data Collected (N=24) Race/Ethnicity Asian 13% Mixed 4% Hispanic 54% White 29% Male 21 % Median Age 3.3 years (range) (1.4, 14.5) Type of Insurance Private 34 % Public (e.g., Medi-Cal) 54 % Military 4 % Other 8 % Maternal English Skills Very good 63 % Good 13 % Not good 12 % Does not speak Eng. 4 % Don t Know 8 %

9 Characteristics of Participating PCPs (N=19) Male sex 37 % Type of Practice Race/ethnicity Private practice 53 % Hispanic/Latino 5 % Group practice 37 % White 42 % County Hospital 5 % Asian 48 % Community clinic 5 % Black 0 % Mixed 5 % California Region Medical Specialty North 32 % General pediatrics 100 % South 47 % Years in Medical Practice Central 21 % Median (range) 22 (6,34)

10 Pediatricians and Office Staff are Very Busy! Do they have time to do additional data-entry for their patients with Primary Congenital Hypothyroidism? Is it easy for them to collect the data we are asking for? Is it good quality data? How can we help them?

11 Factors affecting Feasibility of PCH Long-Term Follow-Up and Data Collection by PCPs Data Accessibility Data Collection Tools PCPs EMR-EHR Readiness PCPs Clinical Competence with PCH PCPs Time & Resources For Data Entry Care-coordination with Endocrinologists

12 Factors affecting Feasibility: Our Observations Data Accessibility Data Collection Tools PCPs EMR-EHR Readiness Hope for the best We can help a bit here PCPs Clinical Competence with PCH PCPs Time & Resources For Data Entry Care-coordination with Endocrinologists

Patterns of PCP engagement with REDCap: Most are completing multiple Visit Forms and Lab Results Forms in one

13 Data Collection Tools PCPs Experience with REDCap So Far REDCap is very easy for PCPs to use feedback is good Few calls for help to Study Manager! Patterns of PCP engagement with REDCap: Most are completing multiple Visit Forms and Lab Results Forms in one data-entry session A deadline for finalizing 2014 data-collection was well-received and helped to motivate Incentive of $200 per patient/per year does not seem to be very important to most PCPs

14 REDCap s Data Monitoring and Graphics Tools are Helpful for Study Staff Scatter Plots Bar Charts

15 Factors affecting Feasibility: Our Observations Data Accessibility Data Collection Tools PCPs EMR-EHR Readiness Hope for the best We can help a bit here PCPs Clinical Competence with PCH PCPs Time & Resources For Data Entry Care-coordination with Endocrinologists

patient s lifespan Only 23% knew when to try a patient off levo-thyroxine treatment to determine if

16 PCPs Clinical Competence with PCH 2014 Cross-sectional survey results revealed PCPs knowledge gaps in PCH case-management: Only 49 % knew the recommended frequency of blood tests to monitor PCH over a patient s lifespan Only 23% knew when to try a patient off levo-thyroxine treatment to determine if PCH is transient Continuing Medical Education (CME) can be a key element in a PCP-centered follow-up model

17 We Created a CME Course for Grand Rounds Developed with the PCH Project Advisory Committee Presented at 4 Children s Hospitals in C! and 1 in Hawaii during 2015, more to come in 2016

18 Stanford Online CME Course Fall 2015 Video-based learning modules with dramatizations, interviews and dynamic content We plan to promote this course to CA pediatricians with screen-positive NBS cases of PCH

19 REDCap Helps Integrate PCP Training Resources Treating Congenital Hypothyroidism Reference Guide Easily downloadable in REDCap Project File Repository

21 CME Pre- and Post- Course Evaluation Results: Confidence with CONFIRMING a PCH Diagnosis 100% 80% % improved their confidence 60% Very Confident 40% Confident 20% Somewhat confident % 2 Not confident at all Pre-Course Post-Course N=109

22 Confidence with INITIATING TREATMENT for PCH 100% 80% % improved their confidence 60% 40 Very Confident 40% 45 Confident 20% 0% Pre-Course Post-Course N=106 Somewhat confident Not confident at all

23 Confidence with PROVIDING FOLLOW-UP for PCH 100% 80% % improved their confidence 60% 40% Very Confident Confident 20% 0% Pre-Course Post-Course N=109 Somewhat confident Not confident at all

for the best We can help a bit here PCPs Clinical Competence with

24 Factors affecting Feasibility: Our Observations Data Accessibility Data Collection Tools PCPs EMR-EHR Readiness Hope for the best We can help a bit here PCPs Clinical Competence with PCH PCPs Time & Resources For Data Entry Care-coordination with Endocrinologists

25 Care-coordination with Endocrinologists We observe that it is happening in different ways Many patients have standing orders for lab testing, e.g., every 3 months Wide variety of how PCPs receive lab results: phone, fax, , electronic access, even from a parent

EHR Integration: A Key Component of LTFU Care-Coordination and Data Collection Can PCPs provide a long-term Medical Home for follow-up of PCH patients?

26 EHR Integration: A Key Component of LTFU Care-Coordination and Data Collection Can PCPs provide a long-term Medical Home for follow-up of PCH patients? Yes, but is dependent on integration of EMR-EHR between PCP, Endocrine practices and labs An ideal REDCap data-collection tool for LTFU would be equally integrated

27 ! Post Follow-Up Survey : What do we want to know? Data Accessibility PCPs EMR-EHR Readiness? PCPs Time & Resources For Data Entry?? Was it easy to access your patient s lab results? How did you receive them? Did you get them automatically from an endocrinologist or the lab? Did you access your current EMR system We can to collect the LTFU clinical data? Did HLP! you prefer to print out the forms? Would electronic reminders to complete data-entry be helpful? Was the data-entry process a burden? Do you think this follow-up data is better collected by a specialist?

28 Study Strengths and Limitations Strengths: Individualized contact with PCP participants and aspects of case-study design allow for qualitative insights into case-management patterns Study helps us to validate the completeness and research utility of the PCH data set Limitations: Small and non-random patient sample: analysis of lab test data and clinical outcomes is not generalizable Questions about scalability and cost-feasibility remain: what would the data-quality monitoring burden be for a cohort of new patients each year in California?

29 Thank You! The contents, including all opinions and views expressed or implied, are entirely personal and do not necessarily represent the opinions or views of any person or organization, including the California Department of Public Health.

30 Research Team Lisa Feuchtbaum, Dr. P.H., M.P.H. Principal Investigator Genetic Disease Screening Program, CDPH Co-Investigators: Ning Rosenthal, M.D., Ph.D. Principal Research Scientist Premier Inc. Los Angeles, CA Sylvia Mann Au, M.S., CGC Hawaii Department of Health, Genetic Section Laura Bachrach, M.D. Professor of Pediatrics Division of Endocrinology Stanford University Medical Center Study Manager: Emily Bezar, M.A. Public Health Foundation Enterprises Advisory Committee Swati Banerjee, M.D. Division of Pediatric Endocrinology Valley Children s Hospital, Madera, C! Mitchell E. Geffner, M.D. Chief, Center for Endocrinology, Diabetes and Metabolism, Children s Hospital Los Angeles, CA Michael Gottschalk, M.D., Ph.D. Chief, Pediatric Endocrinology UC San Diego/Rady Children s Hospital, CA Mary Rutherford, M.D. Pediatrician Children s Hospital Oakland, CA Stuart K. Shapira, M.D., Ph.D. Chief Medical Officer and Associate Director for Science National Center on Birth Defects and Developmental Disabilities (NCBDDD) CDC, Atlanta, GA

31 Acknowledgements ACMG and the NBSTRN LPDR Team Amy Brower Jennifer Loutrel Michael Watson Irina Butler Bruce Bowdish The PCH Project Research Team The PCH Project Advisory Committee Human Resources and Services Administration, Maternal and Child Health Bureau

Impact of Continuing Medical Education on Primary Care Providers Knowledge and Confidence in Caring for Patients with Congenital Hypothyroidism

Impact of Continuing Medical Education on Primary Care Providers Knowledge and Confidence in Caring for Patients with Congenital Hypothyroidism Emily Bezar, MA 1, Ning Rosenthal, MD, PhD 2, Lisa Feuchtbaum