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

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 >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 <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.