Maggie Dreon, MS, CGC Jessica Tarnowski

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1 Communicating incidental findings of sickle cell trait on the newborn screen: A Community-Needs Based Assessment Minnesota Department of Health Newborn Screening Program Maggie Dreon, MS, CGC Jessica Tarnowski Nancy Silva, Patti Constant MPH, Amy Gaviglio MS CGC, Sondra Rosendahl MS CGC, Mark McCann

2 MN Newborn Screening Hemoglobinopathies (disorders of the blood) Began in 1988 Testing Method: Isoelectric focusing (IEF) and high performance liquid chromatography (HPLC) Finds babies with disease Finds babies with trait

3

4 Quality Improvement Project Improve Define Standardize Study Act Study Do Plan Assess Try Analyze

5 Plan: Define Problem: Wide variation exists in the communication of positive newborn screening results for SCT. No national guidelines and no consumer input to guide communication for trait. Objective: Investigate stakeholder perception of the communication of trait status from NBS programs, and evaluate the capacity of NBS programs to conduct effective follow-up.

6 Plan: Assess Notification Process (prior to June 19) Disease Trait Active notification Program Genetic Counselors notified Identify PCP in community and inform them of needed follow-up PCP contacts family to discuss results and facilitates follow-up with specialist Passive notification Report labeled as normal Mailed back to birth facility (submitter) Responsibility of birth facility to provide report to PCP

7 Plan: Assess Wisconsin Yes Yes No Yes No * Conducted by Sickle Cell Program Region IV Mindmap Follow-up on SCT by NBS Program Notify Physician of Record Notify Families NBS Family Education Require Confirmatory Testing Illinois No* Yes Yes * Yes Yes (referral to hematologist) Indiana No* Yes Yes Yes Yes (3-6 months) Kentucky Yes Yes Yes Yes Yes (6 months) Michigan Yes* Yes Yes Yes - Minnesota No (included on mailer) Not directly No No Yes (9 months) Ohio Yes* Yes Yes* Yes Yes (2 months)

8 Plan: Analyze Critical Gaps MN falls behind other states in region on trait notification. Passive approach to communicating results is against national and regional trends. Studies show that communicating results to parents can reduce the public health burden of disease.

9 Plan: Analyze Strategy: Gain insight from members of the community through structured interviews and focus groups. Use findings to construct effective follow-up guidelines. Prediction: Parents want this information in-person from their health care provider. MDH will have to take additional measures to facilitate communication of results in the form of staff-time, available resources, and referral.

10 Do: Conducting Focus Groups Methods Semi-structured interviews Five focus groups 29 participants All parents Identifying as Black/African American or West African Between ages Focus groups transcribed and analyzed using grounded theory and constant comparative.

11 Study: Focus Group Findings 25 All participants (29) answered that they would want to know if their child had a finding of sickle cell trait Letter Electronic Method In Person Visit Phone Call First Choice Second Choice Total Votes

12 Some will prefer phone call, some will prefer letters, some will prefer an in person. Is there a way to do all three, is there a way to do at least two out of three? I think that all that I could ask for is a good faith effort.

13 Study: Focus Group Findings 6% What It could qualities be a non-medical of the notification are valuable? person as long as they know the information. As long as they can relay everything that I need to know about this condition about my child. As long as they can tell me all I need to know: all the questions I need to ask and they didn t have to come back later and I didn t have to hop on Google as long as they can tell me what I need to know Knowledge Base Personal Relationship Provision of Support/Resources Timeliness 19% 13% Knowledge Base Provision of Support/Resources Personal Relationship Timeliness 62%

14 Study: Focus Group Conclusions 1. Current notification methods fail to meet community expectations Lack of direct communication causes false reassurances 2. Individual preferences and concerns of parents go unaddressed Need for multifaceted approach is evident due to lack of consensus of notification method

15 Study: Focus Group Conclusions 3. Comprehensive education aids in parental acceptance of trait results Desire for notifying individual to be knowledgeable on SCT Knowledge Medical degree 4. Community based support groups and organizations aid in increasing awareness and education Enhanced and effective education and awareness efforts - high priority Advocacy and education support organizations are uniquely positioned to help

16 Act: Recommendations Minimum Standard for notification should include: Multifaceted approach (no one-size fits all) Individuals involved in notification need significant working knowledge of SCT and counseling skills Need to be evaluated for effectiveness in community after implementation Resources and Support groups are essential Sickle cell trait Confirmatory testing Counseling options Efforts are needed to increased general awareness Sickle cell trait Newborn Screening

17 Act: Adopt Recommendations MN Began notifying parents and providers on June 19 th, Provider notification: Two attempts to ensure patient is registered with POR listed on NBS card Provider faxed NBS report, provider fact sheet, and parent brochure. Faxback form sent to providers 7 mo. after initial notification to obtain conf. testing results. Parent notification: Parent letter mailed with short plain language letter and Reg IV brochure. Contact information for SCT Advocate provided to answer additional q s Ongoing relations with SCDAM and Children s Sickle Cell Clinic Continue outreach to increase awareness of SCD/SCT.

18 Act: Standardize Compare MDH notification to evolving recommendations by Reg IV hemoglobinopathy workgroup. Track work-load and effort required to facilitate follow-up. Use metrics to extrapolate staff time necessary for other state s follow-up.

19 Act: Improve

20 Act: Improve

21 Act: Improve Month Quality measurements of new SCT notification # of Trait Cases # of CASES LTFU Avg. # days from DOB to PCP notification* % Correct Listed Clinic* % Cases Registered on 1st Attempt* June (19-30) July Aug Sep (1-24) Total % *Only includes cases that are non-nicu and non-abnormal

22 Plan: Future Directions Areas for improvement: - Measuring consumer satisfaction. - Expanding findings to other states and traits/conditions. - Providing support and resources. - Increasing community awareness through outreach.

23 Plan: Future Directions Lessons learned: - Community input is necessary where policy change affects constituents. Knowing what study method to use is helpful (qualitative vs. quantitative) - Quality checks are important to sure effectiveness. - Relationships with healthcare providers are vital to improving outcomes.

24 Questions??? Maggie Dreon, MS, CGC MDH Newborn Screening Program

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