Key screening and monitoring activities

Historically early stage T1D screening has occurred in the context of research (see Module 4 for summary of current studies available).(1) Research protocols typically return screening results to patients and their families along with an explanation of risk associated with the results. Further, most screening studies encourage those with positive results to engage in follow-up education and monitoring, as this has been shown to be a critical part of prevention of DKA at transition to Stage 3 T1D. Thus, health system integration of screening and care for early stage T1D must include attention to the critical activities:

                1. Identification of those eligible for screening

                2. Obtaining samples for screening

                3. Confirming positive screening results

                4. Communication of results to patient/family

                5. Engagement with follow-up education and monitoring

                6. Psychological support through the early T1D journey

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Clinical Contexts for Screening: 
Endocrinology Subspecialist vs. Primary Care Clinic

While care of symptomatic (Stage 3) T1D often involves pediatric- or adult-care specialists in endocrinology or diabetes, early stage T1D can be monitored in either the primary care or subspecialty clinic or through a collaboration between both. Regardless of clinical context, it is important to ensure there is access to expertise for assessment of risk, education of patients/families and for initiation of insulin when indicated.

 

Key Aspects of Healthcare System or Health Clinic’s Infrastructure 

To bring early stage T1D screening to a clinical system, one must consider the available infrastructure pertinent to screening. The infrastructure should support the seven domains of quality: patient experience, effectiveness, efficiency, timeliness, safety, equity, and sustainability. Important considerations for designing a screening and monitoring system include access to staffing, current systems and processes, the physical environment and clinic type, and medical equipment.(2)

 

Addressing these components of the healthcare system are important
to ensure a high-quality screening program.

 

Staffing

        • Engaged stakeholder to oversee the necessary infrastructure and support for the screening program.

        • Trained phlebotomist competent in venipuncture and capillary sample collection for autoantibody
           testing.

        • Translators or translation services to ensure screening risks-vs-benefits are understood.

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On-site endocrinologist or Certified Diabetes Care and Education Specialist (CDCES) is NOT required.

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Basic skills required from onsite healthcare staff:

        • Acquisition of point of care blood glucose testing.
        • Teach patients/families about the signs/ symptoms of Stage 3 T1D.
        • Answer basic questions about the need for monitoring 
        • Understand how to access consult/specialty services for additional needs

 

Advanced skills which can be accessed from consult/specialty services when onsite expertise not available:
        • Teach patients in the use of glucometers 
        • Answer more complex questions about risk and monitoring.
        • Provide information regarding interventions and study participation for early-stage T1D
        • Oversee ongoing monitoring and follow-up
        • Determine when insulin should be started.
        • Address anxiety and other psychosocial concerns or connect family to relevant resources. 
        • Community liaisons for education and engagement of underrepresented populations.

 

Systems and Processes

        • An electronic health record (EHR system) can be used to identify the patients who should be
           screened for pre-T1D based on the current guidelines.(3)

        • Processes can be implemented to coordinate collection of screening sample with well-child visits
           or other labs obtained in health clinic or hospital. Examples include lead screening at 2-3 years and
           lipid panel at 11-12 years.

        • Data management/IT support for return of results.
 

Environment

        • Easy access and sufficient parking.

        • Identify the type of clinic and ensure competent staff are available for sample collection.

                    - Endocrine subspecialty (pediatric and adult)-vs-general pediatric.

        • Adequate space for screening collection.

        • Outpatient lab space, clinic room.

 

Medical Equipment/Supplies

        • Age-appropriate medical supplies for screening sample collection.

        • Point of care blood glucose and urine glucose/ketone testing for symptomatic patients.