Abstract:
BACKGROUND:Cleft in the lip and/or the palate (CL/P) is considered to be a lifelong condition, yet relatively little is known about the long-term outcomes for patients. Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits. OBJECTIVE:To explore the psychological adjustment and possible support needs of a large number of adults born with CL/P from their own perspective. DESIGN:Fifty-two individual telephone interviews eliciting qualitative data. RESULTS:Qualitative analysis identified five themes. Participants reported a range of challenges in relation to discharge from the service, additional surgery as an adult, social and romantic relationships, higher education, vocational achievement, and access to psychological support. The findings imply that most adults with a cleft adjust well to these challenges and report many positive outcomes. For a minority of patients, issues attributed to the cleft may continue to cause distress in adulthood. CONCLUSIONS:Adults with CL/P may require psychological support, information about the heritability of cleft, signposting and referrals from nonspecialists, support regarding further treatment, and opportunities to take part in research and activities. New issues arising in adulthood, such as entering the workplace, forming long-term relationships, and starting a family, may warrant both further investigation and additional support. Further work is needed to identify the factors that contribute to psychological distress and resilience, as well as the timing of particular points of risk and opportunity for personal growth.
journal_name
Cleft Palate Craniofac Jjournal_title
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Associationauthors
Stock NM,Feragen KB,Rumsey Ndoi
10.1597/14-178subject
Has Abstractpub_date
2015-09-01 00:00:00pages
543-54issue
5eissn
1055-6656issn
1545-1569journal_volume
52pub_type
杂志文章abstract::Congenital microstomia in the newborn can result in poor functional and aesthetic outcomes. In the past, treatment options have included surgical methods such as commissurotomies and z-plasties as well as nonsurgical treatments using oral splints. In severe microstomia, a surgical release may be required to permit spl...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/10-114
更新日期:2012-05-01 00:00:00
abstract:OBJECTIVE:In this study, researchers evaluated the otologic and audiologic status of 112 children with repaired cleft lip and palate who had received primary palatal repair by means of Frolova palatoplasty, a surgical technique developed by Dr. Larisa Y. Frolova, founder and director of the National Pediatric Center fo...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1998_035_0495_oaasor_2.3.co_2
更新日期:1998-11-01 00:00:00
abstract::Midface hypoplasia in a 5-year-old boy with Crouzon syndrome was treated using a rigid external distraction device. Seven months prior to this surgery, a bone allograft was used during frontal-orbital bar advancement. Three weeks after the Le Fort III distraction a depression fracture was diagnosed, associated with an...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/07-021.1
更新日期:2008-05-01 00:00:00
abstract::Repair of cleft palate in the adult population is controversial. We present a case of a 66-year-old woman who underwent secondary cleft palate repair. The patient was born with a cleft palate and at age 15 years underwent palate repair that subsequently broke down. She had profound velopharyngeal incompetence, was dif...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665620974572
更新日期:2020-11-25 00:00:00
abstract::Pressure-flow data are often used to provide information about the adequacy of velopharyngeal valving for speech. However, there is limited information available concerning simultaneous pressure-flow measurements for oral and nasal sound segments produced by normal speakers. This study provides normative pressure, flo...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1991_028_0398_pfmfso_2.3.co_2
更新日期:1991-10-01 00:00:00
abstract::Objectives : We herewith report the case of a 43-year-old patient who experienced a skull base fracture associated with minimal trauma. The computed tomography scan examination showed unusual extensive pneumatization of the skull base. This patient used to perform repeated Valsalva maneuvers on a daily basis sin...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/11-280
更新日期:2013-01-01 00:00:00
abstract:OBJECTIVE:To identify demographic and reproductive risk factors for hemifacial microsomia in offspring. DESIGN:In a case-control study, maternal interviews were conducted within 3 years after delivery. Cases with hemifacial microsomia were ascertained from craniofacial centers in 26 cities in the United States and Can...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,多中心研究
doi:10.1597/03-110.1
更新日期:2004-09-01 00:00:00
abstract::Ameloblastic carcinomas are rare malignant lesions with 3 mandibular pediatric cases reported in the literature. We present a case of ameloblastic carcinoma in situ in a 15-year-old male with a right mandibular cystic lesion on computed tomography. The incisional biopsy revealed plexiform ameloblastoma. Due to the inf...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1177/1055665618774021
更新日期:2019-01-01 00:00:00
abstract:OBJECTIVE:First and second branchial arch involvement during early embryonic development results in a wide spectrum of anomalies that encompass diverse, superimposed, and heterogeneous phenotypes within the so-called oculoauriculovertebral spectrum. Nine members of a Brazilian family presenting typical branchial arch i...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/05-060.1
更新日期:2006-07-01 00:00:00
abstract:OBJECTIVE:The Shprintzen-Goldberg syndrome is an extremely rare syndrome with a characteristic face. This is one of a group of disorders characterized by craniosynostosis and marfanoid features. The aim of this study was to present a new sporadic case of the syndrome and describe in detail the findings at the maxillofa...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2003_040_0433_sscr_2.0.co_2
更新日期:2003-07-01 00:00:00
abstract:OBJECTIVE:To propose a prospective registry for distraction osteogenesis research. RESULTS:The search strategy identified 82 reports, of which 11 were review articles, 17 were animal studies, 5 were theoretical models, and 49 were case reports/series. CONCLUSIONS:So far, the literature concerning distraction osteogen...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,meta分析
doi:10.1597/1545-1569_2002_039_0641_easdmi_2.0.co_2
更新日期:2002-11-01 00:00:00
abstract:OBJECTIVE:To determine whether early routine grommet insertion in children with cleft palate has a beneficial effect on hearing and speech and language development compared with conservative management. DESIGN:Systematic review of randomized controlled trials, controlled clinical trials, case series, and prospective a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/07-219.1
更新日期:2009-01-01 00:00:00
abstract::Bone grafting of the alveolus is an essential step in the reconstruction of the orofacial cleft deformity. Secondary grafting with iliac marrow consistently produces trabecular bone to unify the maxilla and provide odontogenic support. It requires preoperative maxillary alignment, well designed mucoperiosteal flaps, a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/1545-1569_2000_037_0229_moacbg_2.3.co_2
更新日期:2000-05-01 00:00:00
abstract:OBJECTIVE:Nonsyndromic cleft lip/palate (NSCLP) has the characteristics of a complex genetic trait. Linkage and association studies have suggested that one or more clefting loci may be located on chromosome 4q. The goal of this study was to evaluate the possible linkage and association due to linkage disequilibrium bet...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/03-160.1
更新日期:2005-05-01 00:00:00
abstract:OBJECTIVE:Clinical studies have shown both abnormal and normal mental and psychomotor development in patients with craniosynostosis. However, a number of confounding variables make study comparisons difficult. For these reasons, the present study describes early neuromotor development in an homogeneous rabbit model of ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2003_040_0486_enbicr_2.0.co_2
更新日期:2003-09-01 00:00:00
abstract::Treacher Collins syndrome usually affects bilateral and symmetric structures that include the orbits, mandible, and ears. The purpose of this report is to describe a clinical case of the syndrome, focusing on the anatomy of the temporomandibular joint, which was assessed using the computed tomography method. Clinical ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/06-116.1
更新日期:2007-11-01 00:00:00
abstract:OBJECTIVE:In this report, the orthodontic treatment combined with rigid external distraction osteogenesis in a 5.5-year-old girl with midfacial hypoplasia and oligodontia is described. PATIENT:The child presented with a reduced maxilla, protruding lower lip, skeletal Class III jaw relationship with a low mandibular pl...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2003_040_0207_redofa_2.0.co_2
更新日期:2003-03-01 00:00:00
abstract:OBJECTIVE:This objective of this study was to determine the effect of presurgical nasoalveolar molding on long-term nasal shape in complete unilateral clefts. DESIGN:The study was retrospective, and the subjects were chosen at random. Nasal casts of the subjects were scanned in three dimensions. Each nose was best fit...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1999_036_0391_lteonm_2.3.co_2
更新日期:1999-09-01 00:00:00
abstract:OBJECTIVE:To understand the experience of families with children undergoing cleft surgery following adoption from a country outside the United States. To identify factors, including the timing of surgery, that influence family function throughout the surgical experience. DESIGN:Semistructured qualitative interviews we...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-260
更新日期:2016-07-01 00:00:00
abstract:INTRODUCTION:Assessment of cranial dysmorphism in sagittal synostosis is often subjective but objective measures can be applied. These include cephalic index (CI) and midsagittal vector analysis (MSVA). OBJECTIVE:To assess discriminant validity, construct validity, and responsiveness of CI and MSVA measured from compu...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665618815400
更新日期:2019-08-01 00:00:00
abstract::This study investigated the efficacy of a parent questionnaire as a component for screening early language development of children 16 to 30 months of age with cleft lip and palate. Thirty nonsyndromic children with cleft lip and palate and 30 children without clefts received the MacArthur Communicative Development Inv...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1995_032_0007_pqfsel_2.3.co_2
更新日期:1995-01-01 00:00:00
abstract:OBJECTIVE:The assessment of the posterior pharyngeal vasculature in velocardiofacial syndrome has been traditionally based on endoscopic visualization of pulsations or conventional angiography. This case report describes the utility of presurgical imaging with magnetic resonance angiography (MRA) prior to performing ph...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1997_034_0266_mrafpa_2.3.co_2
更新日期:1997-05-01 00:00:00
abstract::This article presents a technique for the fabrication of a modified nasoalveolar molding appliance using 0.032-inch titanium-molybdenum alloy wire for nasal stents incorporating a "double loop." The nasal stents are included in the acrylic molding plate at the time of appliance insertion. The acrylic retention button ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/13-065
更新日期:2013-07-31 00:00:00
abstract::Children with palatal clefts and their parents were interviewed to determine what information they had about the cleft and its management. Their responses were compared with the standards of 17 team members from seven disciplines. Both parent and child were consistently provided information about clefts that they were...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1991_028_0329_aoirbp_2.3.co_2
更新日期:1991-10-01 00:00:00
abstract::Objective : Reconstructive surgery to improve psychological well-being is commonly offered to children with craniofacial conditions. Few studies have explored the challenges of reconstructive surgery beyond the physical risks: poor treatment outcomes, infection, brain damage, and death. This qualitative study aims to ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/11-127
更新日期:2013-03-01 00:00:00
abstract:OBJECTIVE:To achieve sufficient velopharyngeal function and maxillary growth for patients with unilateral cleft lip and palate (UCLP), the authors have designed a new treatment protocol for palate closure involving early two-stage palatoplasty with modified Furlow veloplasty. Details of the surgical protocol and the ou...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-067.1
更新日期:2010-01-01 00:00:00
abstract:OBJECTIVE:Genetics has been thought to play a crucial role in the etiology of non-syndromic cleft lip and palate (CL/P) for over 60 years, but we are still no closer to finding contributing genes. The main hindrance to the progress of CL/P genetic research is the complex multifactorial nature of the disorder with envir...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/1545-1569_2002_039_0327_fatfet_2.0.co_2
更新日期:2002-05-01 00:00:00
abstract::Frontonasal malformation (FNM) is a developmental field defect representing abnormal morphogenesis of the frontonasal eminence. The oculoauriculovertebral spectrum (OAVS) has been used to describe a broader range of first and second branchial-arch defects including hemifacial microsomia and Goldenhar's syndrome. A com...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章,评审
doi:10.1597/1545-1569_1996_033_0519_fmatos_2.3.co_2
更新日期:1996-11-01 00:00:00
abstract:OBJECTIVE:We have observed clinically that some speakers wearing a speech appliance for correction of velopharyngeal incompetence can blow with variable intensity without nasal air escape. This clinical finding suggests that tightness of velopharyngeal closure may be regulated in accordance with oral air pressure durin...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_1999_036_0224_eopoas_2.3.co_2
更新日期:1999-05-01 00:00:00
abstract:OBJECTIVES:To assess the risk of dental anomaly presentation in permanent teeth in a group of Colombian children with nonsyndromic cleft lip and palate (NSCLP) and to determine the frequency of the anomalies according to the cleft type. METHODS:An analytical matched case-control study was conducted with 210 controls a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665619861498
更新日期:2020-01-01 00:00:00