Prenatal diagnosis of orofacial clefts: association with maternal satisfaction, team care, and treatment outcomes.
OBJECTIVE
Prenatal diagnosis of an orofacial cleft is thought to allow mothers greater opportunity to become prepared for the special needs of an infant with a cleft and plan for the care of their child. Using a population-based sample, we determined which children were more likely to be diagnosed prenatally, and whether early diagnosis was associated with maternal satisfaction and treatment outcomes.


METHODS
Interviews were completed with 235 (49% of eligible) mothers of children ages 2 to 7 with orofacial clefts initially enrolled in the National Birth Defects Prevention Study from the Arkansas, Iowa, and New York sites. Maternal satisfaction with information, support, and treatment outcomes was compared between women who received a prenatal diagnosis and those who did not.


RESULTS
Of 235 infants with clefts, 46 (19.6%) were identified prenatally. One third of mothers were somewhat or not satisfied with information provided by medical staff. Satisfaction did not vary by timing of the diagnosis. Infants diagnosed prenatally were no more likely to have received care provided by a recognized multidisciplinary cleft team (76%) than were infants diagnosed at birth (78%). Speech problems and facial appearance as rated by the mother did not vary by timing of the diagnosis.


CONCLUSIONS
Timing of the cleft diagnosis did not alter maternal satisfaction with information, whether care was provided by a designated cleft team, or maternal perception of facial appearance or speech. Further research should determine whether prenatal diagnoses alter maternal anxiety or influence postnatal morbidity.
Robbins
James M
JM
Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA. robbinsjamesm@uams.edu
Damiano
Peter
P
Druschel
Charlotte M
CM
Hobbs
Charlotte A
CA
Romitti
Paul A
PA
Austin
April A
AA
Tyler
Margaret
M
Reading
J Alex
JA
Burnett
Whitney
W
D022126:Access to Information; D001131:Arkansas; D001294:Attitude to Health; D002971:Cleft Lip / Q000175:diagnosis*; D002972:Cleft Palate / Q000175:diagnosis*; D042241:Early Diagnosis; D004954:Esthetics; D005145:Face; D005248:Feeding Methods; D005260:Female; D005315:Fetal Diseases / Q000175:diagnosis*; D006801:Humans; D007182:Income; D007484:Iowa; D009035:Mothers / Q000193:education / Q000523:psychology; D009518:New York; D010348:Patient Care Team; D010549:Personal Satisfaction; D011159:Population Surveillance; D011247:Pregnancy; D011296:Prenatal Diagnosis; D064186:Prenatal Education; D011369:Professional-Patient Relations; D012944:Social Support; D013065:Speech Intelligibility / Q000502:physiology; D016896:Treatment Outcome
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