CLEFT-LIP WITH OR WITHOUT CLEFT-PALATE - EFFECT OF FAMILY HISTORY ON REPRODUCTIVE PLANNING, SURGICAL TIMING, AND PARENTAL STRESS

Objective: This study tested whether the presence of a family history of nonsyndromic cleft lip with or without cleft palate (NSCLP) lessens the negative impact on reproductive planning, decreases treatment anx iety, and relieves parental stress when there is a recurrent cleft. De sign: Sixty-one participating families, retrospectively ascertained th rough their children with NSCLP, were divided into two groups: those w ith a family history of clefting and those in which only the proband w as affected. Setting: Each family completed a questionnaire either at their home or during a clinic visit. Participants: Questionnaires were distributed to 117 families with an NSCLP child. Of these 117, 49 (42 %) had another family member with NSCLP and 68 (58%) had no prior hist ory of clefting, Sixty-one (52%) families returned the questionnaire a nd were categorized by family history. Main Outcome Measures: The Pare nting Stess Index and the Hollingshead Index of Social Position were i ncluded with family and medical history questions in the 137-item ques tionnaire. Results: The reproductive plans of the two groups were quit e similar and were not dependent on the families' actual or perceived recurrence risks of NSCLP. The majority (85%) of the children with NSC LP underwent surgical closure at the recommended age. The two groups d id not significantly differ on any score on the Parenting Stress Index , indicating a similar parental stress level between the groups, Concl usions: These findings suggest that family history does not significan tly influence reproductive plans, timing of cleft repair, or stress of parents of a child with NSCLP Further, these results indicate a need for additional psychosocial study of this population.