Maryland State Sickle Cell Disease Follow Up Program SCDAA 41 st Annual Convention September 27, 2013

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1 Maryland State Sickle Cell Disease Follow Up Program SCDAA 41 st Annual Convention September 27, 2013 Ms. Donna X. Harris Director Dr. Deborah Badawi, MD Medical Director Ms. Monika Piccardi RN, BSN Program Chief, Birth Conditions Long Term Follow Up Ms. Katyayani Bhide Database Manager Office of Genetics and People with Special Health Care Needs Maryland Department of Health and Mental Hygiene

2 MISSION AND VISION MISSION The mission of the is to protect, promote and improve the health and well-being of all Marylanders and their families through provision of public health leadership and through community-based public health efforts in partnership with local health departments, providers, community based organizations, and public and private sector agencies, giving special attention to at-risk and vulnerable populations. VISION The envisions a future in which all Marylanders and their families enjoy optimal health and wellbeing.

3 Screening Maryland began newborn screening for sickle cell disease in 1985 as part of the blood spot panel. Results can be FS (sickle cell disease); FAS (sickle trait); or FSX (sickle and something else, such as C).

4 Sickle Cell Disease Program (SCD) Long Term Follow Up Sickle Cell Anemia (Health General, Article 18, section 5) Establishes a program for screening newborns for sickle cell anemia, monitoring each affected infant s health and providing parental education regarding sickle cell anemia. OGPSHCN follows up on children identified with sickle cell disease to educate families and providers about needed preventive care.

5 Original Concept Mortality among young children was high, yet preventive measures were available to improve these rates. Physicians and families needed education to implement these measures. Providers and parents received an initial informational packet at diagnosis; annual follow up; and school information at age 5 years.

6 Program Statistics WHY CHANGE? CARE KEEPS GETTING BETTER!

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8 * Based on CDC data from 2011 for children 1 year old.

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12 Program Quality Assurance Cycle Evaluation/Assessment Program effectiveness Data Response from stakeholders New improvements in care Medical psychosocial Planning Based on evaluation of program, stakeholder input and response New data New regulations New goals IT input Sickle Cell Disease Follow Up Program Stakeholders Providers Specialists Parents/Caregivers Persons with Sickle Cell Implementation

13 New Program Planning and Implementation After presenting the concept and rationale for the expanded Sickle Cell Follow Up Program to the Hematology Consortium, there was a consensus that the original focus of the program was being met. They (Hematology centers) were seeing a majority of the states children with Sickle Cell Disease There was a need to expand the focus to long term follow up and transition into adulthood and using adult providers.

14 New Program Planning and Implementation Program Goals To continue to monitor immunizations and prophylactic use of antibiotics and provide education to parents/caregivers and providers. Immunization schedules Medical Management Community resources Mechanism for new residents to take part in program Increase (add) educational efforts to those children ages 5 to 18. Educational mailings to parents/caregivers and teens/young adults Assist in transition to adult providers Increase provider education Targeted provider visits Increase collaborative efforts with Local Health Departments Insurers Community groups

15 New Program Planning and Implementation Implementation

16 New Program Planning and Implementation Design New Program format/plan Update website to include new information Update database to incorporate program format

17 New Sickle Cell Follow up Program Initial report from birth hospital to Newborn Screening/Follow Up Referral to Long Term Follow Up once initial labs are confirmed Parents may also self refer if new to state via call to program or website Initial information packet mailed to parent, with telephonic follow up.

18 New Sickle Cell Follow up Program Initial Provider packet sent to PCP on record. NIH Sickle Cell Disease Guidelines Immunization Schedule Annual Provider Evaluations sent through age 5. Parental Education provided based on evaluation and/or request by PCP.

19 New Sickle Cell Follow up Program 2 year old parent Information packet Information on preparing for preschool/daycare Review of information regarding Sickle Cell follow up with physicians, specialists and emergencies. Telephonic follow up

20 New Sickle Cell Follow up Program 5 year old parent information packet Information on preparing child for school Information for school staff. Telephonic follow up

21 New Sickle Cell Follow up Program 12 year old parent/child information packet Transition (general and specific to child with a chronic illness) information Sports information in regards to Sickle Cell. Biographies of people living with Sickle Cell. Telephonic follow up.

22 New Sickle Cell Follow up Program 16 year old youth information packet Transition (general and specific to sickle cell) Information Living with Sickle Cell Telephonic follow up

23 New Sickle Cell Follow up Program 18 year old adult information packet Living with Sickle Cell Pregnancy Transition to a college setting (moving away from home) Telephonic follow up

24 New Program Planning and Implementation Update website To include new program information Self Referral form Updated community resources All information that is mailed to provider, parents/caregivers and teens and young adults (ongoing)

25 Old Database It was a data entry system which allowed record creation. Old technology (MS Access) based Database No timestamps for the followup tasks. No data report generation capabilities. Current Database A web based application with a relational database architecture This system has data entry, follow-up, letter generations, and reporting and data analysis modules An auto generated work flow ques and time stamp for each step incentivizes timely completion of work in queues. Extensive reporting module which helps monitoring of the program response and results and process gaps. In house development allowed customization and flexibility for enhancements. Future Database It will be a 2 step process Step 1: Add new modules to the current system to allow follow-up beyond 5 years of age We will need to smoothen out some of the rigidity in the current system and aim to make the new processes and system both a little more flexible. Step 2: Electronic Data Sharing System via HIE connection as a part of the new NBS LTFU grant from HRSA. HIE DHMH HIE

26 Database: Static vs. Dynamic

33 Conclusion After working with a dedicated program IT person, the new database was updated to work with the new (2013) program design, to the extent that it was possible. Because of the limitations built into the 2012 database, these were only temporary fixes and took some time to be worked into the database. The new database needs to be retooled to incorporate the program changes and allow for future flexibility, as the program adjusts to new data and advancement in Sickle Cell Disease treatment. Public Health Programs and their subsequent electronic databases need to be easily adaptable to allow for minor and major program changes based on periodic reviews

34 Sickle Cell Disease Follow up Program Program Chief, Birth Conditions and Long Term Follow Up Monika Piccardi RN BSN 201 W. Preston St. Room 423 Baltimore, MD Follow us on our Facebook page MDHMH Office of Genetics and People with Special Health Care Needs

35 PREVENTION AND HEALTH PROMOTION ADMINISTRATION