A Qualitative Study on Engaged Families' Experiences with Long-Term Follow-Up Care in the Colorado/Wyoming Newborn Screening System.

ABSTRACT: Understanding whether the long-term follow-up (LTFU) system is working for families is critical to measuring the success of newborn screening (NBS) and understanding why some families are lost to follow-up. Caregivers were recruited from six pediatric specialty care clinics. Data were gathered from caregivers via five focus groups and one individual interview (n = 24). Caregiver participants represented a wide range of children's ages and conditions identified through NBS. While this is not the first study to gather caregivers' input on LTFU, it provides a wide breadth of perspectives (e.g., metabolic, endocrine, hemoglobinopathy, etc.). When asked about goals for their children, caregivers identified health-related goals (i.e., children able to care for themselves, not hindered by

SUBMITTER: Quesada S 

PROVIDER: S-EPMC11417874 | biostudies-literature | 2024 Sep

REPOSITORIES: biostudies-literature