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Family Outcomes After Newborn Screening
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DOI：10.1542/peds.2025-073706.png)
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Abstract
En 中文
Newborn screening (NBS) is a public health program that identifies babies with health conditions that need early treatment. Determining benefit of NBS has traditionally focused on outcomes for children. Families also benefit from NBS, but the range of family outcomes has not been defined. We conducted a systematic process with extensive interest group input to identify 8 possible outcomes for families who have a child diagnosed with a condition after a positive NBS result: (1) families understand their child's condition and treatment options; (2) families access medical care and treatments; (3) families manage their child's needs and routines; (4) families advocate for their child; (5) families access community resources, services, and programs; (6) families access social support; (7) individual family members maintain personal well-being; and (8) families feel successful in functioning as a unit. These outcomes provide a framework for developing measurement tools by which benefits for families after NBS can be documented and ultimately used to evaluate strategies that could maximize outcome attainment.
Keywords:
HEALTH-CARE NEEDS
PRADER-WILLI-SYNDROME
PSYCHOMETRIC VALIDATION
INFORMATION NEEDS
CYSTIC-FIBROSIS
FOLLOW-UP
CHILDREN
PARENTS
EXPERIENCES
DISORDERS
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