Concerns of Parents of Cleft Lip/Cleft Palate Patients

To help develop future therapies for cleft lip/cleft palate patients, we conducted a questionnaire survey of 536 parents (chiefly mothers) of cleft lip/cleft palate patients consulting the Speech Outpatient Clinic of the Department of Plastic and Reconstructive Survery, Showa University, and the Department of Plastic and Reconstructive Surgery and Orthodontics and the Clinic for Speech Disorders of Kumamoto Kinoh Hospital.<BR>One hundred and seven of the patients had cleft lip,307 cleft lip and palate, and 122 cleft palate. Age ranged from 2 weeks to 12 years,11 months.<BR>Using a questionnaire consist ing of 30 items, the parents were asked to select the 3 items presently of the greatest concern to them. The results were classified into sucking/feeding, development, surgery, speech, ear/nose disorders, malocclusion, appearance, social adaptation/personality, academic advancement/employment, marriage/birth, heredity, notification of dysfunction, x-ray studies, medical costs, and others.<BR>1) The concerns of the parents of the cleft lip/cleft palate patients were varied. For the entire group, concern was high with regard to the following in decreasing order of frequency: malocclusion (20.4 %), surgery (16.3 %), heredity (10.8 %), speech (10.2 %), appearance (9.5 %), and ear/nose disorders (9.1 %), indicating marked concern about areas directly concerned with therapy<BR>.2) With regard to cleft type-related differen c es, patterns of concern thought to reflect differences in the clinical features of each cleft type were apparent. In the cleft lip alone group, surgery and appearance were of particular concern, while in the cleft palate alone group malocclusion and speech were important. In the cleft lip and palate group, the features of both groups were combined with malocclusion, surgery, speech and appearance of particular concern.<BR>3) With re gard to age-related differences, concern tended to be focused on items related to present therapy or preparation for therapy, surgery marked in infancy, malocculusion, surgery and speech in early childhood, and malocclusion and ear/nose disorders during school age.<BR>4) No sex-related differences in matters of concern w ere found.<BR>5) Concern about heredity was marked regardless of cleft type or age.<BR>6) The fact that the primary dysfunction caused by cleft lip/cleft palate may lead to secondary dysfunction affecting social activities mandates that therapy be directed at the total person and not limited to only the local problems.