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Background Children with congenital hypothyroidism (CH) are at risk for preventable intellectual disability without adequate medical management. The purpose of this manuscript is to discuss quality improvement (QI)-based processes for improving provider adherence to practice guidelines and ultimately identifying at-risk patients with chronic illness prior to the occurrence of adverse events. Methods Our study population included patients ages ≤3 years diagnosed with CH; lost to follow-up was defined as &gt;180 days since last evaluation by an endocrinology provider. Iterative testing of interventions focused on establishing standardized care through (1) registry-based identification, (2) scheduling future appointments during current visits, (3) outreach to patients lost to follow-up and (4) provider and family education of current practice guidelines. Results A population-validated, electronic medical registry identified approximately 100 patients ages ≤3 years diagnosed with CH; initially, 12% of patients met criteria for lost to follow-up. Through serial testing of interventions, the rate of loss to follow-up declined to the goal of &lt;5% within 8 months. Additional measures showed improvement in provider adherence to standard of care. All patients identified as lost to follow-up initially were seen within the first 3 months of intervention. Conclusions Applying QI methodology, a multidisciplinary team implemented a process to identify and contact high-risk CH patients with inadequate follow-up. Focused interventions targeting population management, scheduling and patient/provider education yield sustained improvement in the percentage of patients with a chronic condition who are lost to follow-up.

Untreated congenital hypothyroidism due to loss to follow-up: developing preventive strategies through quality improvement