title: Outcomes of referrals to Child Protective Services for medical neglect in patients with phenylketonuria: Experiences at a single treatment center.
abstract: Phenylketonuria (PKU) results in an accumulation of phenylalanine (phe) in the blood which can lead to multiple health consequences in affected individuals. Treatment for PKU is available; however adherence to medical management recommendations can be difficult. When recommendations are not followed and the health of a child is at risk, one intervention that may be necessary is a referral for medical neglect to the local child protective services (CPS) agency. This study summarizes the cases that were referred from our metabolic clinic at the Children's Hospital of Michigan to CPS, and the outcomes of that intervention. CPS referrals helped to improve adherence to medical management recommendations in the majority of cases, including a lower blood phe level for the child; however, at times that improvement did not occur until after a second referral and/or the child's temporary removal from the home.
authors.affiliation: Department of Pediatrics, Division of Genetic and Metabolic Disorders, Detroit Medical Center, Children's Hospital of Michigan, 3950 Beaubien, Detroit, MI 48201, United States. Electronic address: abannick@dmc.org.
authors.forename: Allison A
authors.initials: AA
authors.lastname: Bannick
authors.affiliation: Wayne State University School of Medicine, 540 East Canfield, Detroit, MI 48201, United States. Electronic address: jlaufman@med.wayne.edu.
authors.forename: Jason D
authors.initials: JD
authors.lastname: Laufman
authors.affiliation: Department of Pediatrics, Division of Genetic and Metabolic Disorders, Detroit Medical Center, Children's Hospital of Michigan, 3950 Beaubien, Detroit, MI 48201, United States. Electronic address: heidiledwards@yahoo.com.
authors.forename: Heidi L
authors.initials: HL
authors.lastname: Edwards
authors.affiliation: Department of Pediatrics, Division of Genetic and Metabolic Disorders, Detroit Medical Center, Children's Hospital of Michigan, 3950 Beaubien, Detroit, MI 48201, United States. Electronic address: JVentimi@dmc.org.
authors.forename: June
authors.initials: J
authors.lastname: Ventimiglia
authors.affiliation: Department of Pediatrics, Division of Genetic and Metabolic Disorders, Detroit Medical Center, Children's Hospital of Michigan, 3950 Beaubien, Detroit, MI 48201, United States; Center for Molecular Medicine and Genetics, Departments of Pediatrics and Pathology, Wayne State University School of Medicine, 540 E. Canfield, Detroit, MI 48201, United States. Electronic address: gfeldman@med.wayne.edu.
authors.forename: Gerald L
authors.initials: GL
authors.lastname: Feldman
mesh_terms: D002648:Child; D002649:Child Abuse; D000068216:Child Protective Services; D002675:Child, Preschool; D006801:Humans; D007223:Infant; D010649:Phenylalanine / Q000097:blood; D010661:Phenylketonurias / Q000097:blood*; D012017:Referral and Consultation
chemical_list: D010649:Phenylalanine
keywords: Child Protective Services; Medical neglect; Phenylketonuria