title: Barriers to successful dietary control among pregnant women with phenylketonuria.
abstract: OBJECTIVE
  The teratogenic effects of maternal PKU are preventable, yet affected babies continue to be born. This study's purpose was to identify barriers to successful dietary control among pregnant women with PKU.
  
  
  METHODS
  An interview-based study was conducted of women with PKU who were known to metabolic disease clinics in three states and pregnant during 1998 to 2000. Medical records were used to document timing of metabolic control.
  
  
  RESULTS
  Of 24 women in the study, only 8 (33%) initiated the diet before pregnancy. Of 22 medical records received, only 12 (55%) indicated control of blood phenylalanine levels before 10 weeks' gestation. Risk factors for late dietary control included young age and belief that treatment costs complicated the diet. Although all of the women expressed confidence in the metabolic clinic staff, few perceived their obstetricians were knowledgeable about the maternal PKU diet. Of 13 women enrolled in state-based assistance programs, 9 (69%) reported proof of pregnancy was required for eligibility. Many women using private insurance reported their insurers were unwilling to pay for medical foods. When the data were stratified according to state of residence, differences were observed in the rate of live-born infants, prepregnancy medical food use, average travel time to the metabolic clinic, and gestational week when metabolic control was achieved.
  
  
  CONCLUSIONS
  Our study's findings may be used to target educational messages to women with PKU and to direct future research directions. For example, obstetric knowledge of maternal PKU needs further evaluation. Discrepancies should be resolved between maternal PKU medical recommendations and the policies of third party-payers. The disparities in financial assistance and services available to pregnant women with PKU residing in different states should be examined further.
authors.affiliation: Division of Applied Public Health Training, Epidemiology Program Office, National Center for Environmental Health, Centers for Disease Control and Prevention, Atlanta, Georgia 30341, USA.
authors.forename: Amanda Savage
authors.initials: AS
authors.lastname: Brown
authors.forename: Paul M
authors.initials: PM
authors.lastname: Fernhoff
authors.forename: Susan E
authors.initials: SE
authors.lastname: Waisbren
authors.forename: Dianne M
authors.initials: DM
authors.lastname: Frazier
authors.forename: Rani
authors.initials: R
authors.lastname: Singh
authors.forename: Fran
authors.initials: F
authors.lastname: Rohr
authors.forename: Jill M
authors.initials: JM
authors.lastname: Morris
authors.forename: Aileen
authors.initials: A
authors.lastname: Kenneson
authors.forename: Pia
authors.initials: P
authors.lastname: MacDonald
authors.forename: Marta
authors.initials: M
authors.lastname: Gwinn
authors.forename: Margaret
authors.initials: M
authors.lastname: Honein
authors.forename: Sonja A
authors.initials: SA
authors.lastname: Rasmussen
mesh_terms: D000328:Adult; D000367:Age Factors; D004493:Education; D005260:Female; D005526:Food, Formulated / Q000191:economics; D006297:Health Services Accessibility; D006801:Humans; D019458:Insurance Coverage; D008607:Intellectual Disability / Q000517:prevention & control; D010349:Patient Compliance; D010649:Phenylalanine / Q000097:blood; D017042:Phenylketonuria, Maternal / Q000097:blood / Q000178:diet therapy* / Q000191:economics; D011247:Pregnancy; D011256:Pregnancy Outcome; D012189:Retrospective Studies; D012307:Risk Factors; D013221:State Health Plans; D014481:United States
chemical_list: D010649:Phenylalanine