Abstract:
OBJECTIVE:The aim of this systematic review was to identify patient-reported outcome (PRO) instruments used in research with children/youth with conditions associated with facial differences to identify the health concepts measured. DESIGN:MEDLINE, EMBASE, CINAHL, and PsycINFO were searched from 2004 to 2016 to identify PRO instruments used in acne vulgaris, birthmarks, burns, ear anomalies, facial asymmetries, and facial paralysis patients. We performed a content analysis whereby the items were coded to identify concepts and categorized as positive or negative content or phrasing. RESULTS:A total of 7,835 articles were screened; 6 generic and 11 condition-specific PRO instruments were used in 96 publications. Condition-specific instruments were for acne (four), oral health (two), dermatology (one), facial asymmetries (two), microtia (one), and burns (one). The PRO instruments provided 554 items (295 generic; 259 condition specific) that were sorted into 4 domains, 11 subdomains, and 91 health concepts. The most common domain was psychological (n = 224 items). Of the identified items, 76% had negative content or phrasing (e.g., "Because of the way my face looks I wish I had never been born"). Given the small number of items measuring facial appearance (n = 19) and function (n = 22), the PRO instruments reviewed lacked content validity for patients whose condition impacted facial function and/or appearance. CONCLUSIONS:Treatments can change facial appearance and function. This review draws attention to a problem with content validity in existing PRO instruments. Our team is now developing a new PRO instrument called FACE-Q Kids to address this problem.
journal_name
Cleft Palate Craniofac Jjournal_title
The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Associationauthors
Wickert NM,Wong Riff KWY,Mansour M,Forrest CR,Goodacre TEE,Pusic AL,Klassen AFdoi
10.1597/16-148subject
Has Abstractpub_date
2018-08-01 00:00:00pages
989-998issue
7eissn
1055-6656issn
1545-1569journal_volume
55pub_type
杂志文章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:OBJECTIVE:To explore the application of magnetic resonance imaging (MRI) in the evaluation of patients with cleft palate before and after primary palatoplasty with particular attention focused on the levator veli palatini muscle. DESIGN:Prospective study using MRIs of subjects before and after primary cleft palate sur...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 临床试验,杂志文章
doi:10.1597/03-060.1
更新日期:2004-11-01 00:00:00
abstract::Although several significant research projects have arisen from international cooperation, especially in the field of genetics, these have been the exception rather than the rule. However, those of us who had the privilege and delight of participating in the World Health Organization meetings were struck by a common r...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 共识发展会议,杂志文章,评审
doi:10.1597/03-214.1
更新日期:2004-05-01 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::This case report intends to provide the facial characteristics of Escobar syndrome and to describe the orthodontic treatment of a 12-year-old female patient diagnosed with it. Escobar syndrome, a variant of the multiple pterygium syndrome, is a rare disorder with many systemic, facial, and oral manifestations.The pati...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665618823416
更新日期:2019-08-01 00:00:00
abstract:OBJECTIVE:In wide palatal defects, closure of the nasal layer can prove a considerable challenge. Mobilizing nasal flaps posteriorly usually facilitates soft palate closure. However, the defect is often too wide within the hard palate; hence, bilateral vomerine flaps are frequently required. Despite this, there is ofte...
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:10.1177/1055665617732781
更新日期:2018-03-01 00:00:00
abstract:OBJECTIVE:Children with cleft lip and palate are reported to be commonly associated with higher prevalence of dental anomalies such as hypodontia, supernumeraries, and abnormalities in tooth size, shape, and position. This study investigated the prevalence of dental anomalies in a longitudinal cohort of children with u...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665617750489
更新日期:2018-04-01 00:00:00
abstract:OBJECTIVE:To record maxillary and mandibular displacement with articular growth and in response to bimaxillary surgical repositioning in patients with hemifacial microsomia (HFM) and to observe ipsilateral corpus/ramus growth in severely affected children. DESIGN:Prospective roentgen stereometric analysis (mean age 7 ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/02-123.1
更新日期:2004-05-01 00:00:00
abstract:OBJECTIVE:The purpose of this study was to examine differences in velopharyngeal structures between adults with repaired cleft palate and normal resonance and adults without cleft palate. DESIGN:Thirty-six English-speaking adults, including 6 adults (2 males and 4 females) with repaired cleft palate (M = 32.5 years of...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665617752803
更新日期:2018-11-01 00:00:00
abstract:OBJECTIVE:Describe the surgical repositioning of the premaxilla using an innovative minimally invasive endonasal approach and secondary bone graft at the same time. We want to emphasize the importance of virtual surgical planning in this technique. MATERIAL AND METHODS:A total of 6 patients with bilateral complete cle...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665618791706
更新日期:2019-04-01 00:00:00
abstract:OBJECTIVE:To evaluate the effect of an American Cleft Palate-Craniofacial Association (ACPA)-approved multidisciplinary team on velopharyngeal insufficiency (VPI) diagnosis and treatment. DESIGN:Retrospective cohort setting; tertiary children's hospital patients; children with cleft palate repair identified through pr...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665620954063
更新日期:2020-10-05 00:00:00
abstract::Objective : Palatal fistulas are not uncommon after palatoplasty. Although there are currently many techniques that can be used to close large palatal fistulae, most of these procedures are usually cumbersome and mostly unreliable with high recurrence rates. The facial artery musculomucosal (FAMM) flap was described t...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/12-115
更新日期:2013-11-01 00:00:00
abstract:OBJECTIVE:To evaluate the characteristics of masticatory muscle activity in operated unilateral cleft lip and palate (UCLP) patients with anterior crossbite compared with normal individuals. SUBJECTS:Sixteen male and 13 female Chinese patients with UCLP and anterior crossbite. Fifteen male and 13 female Chinese indivi...
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_0415_eiommi_2.3.co_2
更新日期:1998-09-01 00:00:00
abstract:OBJECTIVE:To present a child born with both mitochondrial myopathy and cleft palate, outlining medical complications of this dual diagnosis-the first reported case in English literature. METHODS:A preterm Caucasian boy presented to the cleft palate clinic at birth for evaluation of a secondary cleft palate. Multiple a...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/03-040.1
更新日期:2005-05-01 00:00:00
abstract:BACKGROUND:Previous studies have investigated psychosocial adjustments among adolescents with cleft lip and/or palate (CL/P), but our understanding of other craniofacial conditions remains limited. The objective of this study is to compare psychosocial adjustments among 3 groups of adolescents: craniofacial conditions ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665619888308
更新日期:2020-05-01 00:00:00
abstract::This study examined ratings regarding satisfaction with facial appearance and speech performance from 495 parent-child pairs. Data were obtained from school-aged children (5-18 years old) and their parents using standardized independent interviews. Results revealed that 54 percent of the children with cleft lip (CL) o...
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_1992_029_0262_hopwcp_2.3.co_2
更新日期:1992-05-01 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::Most clinical and ethical decisions are made between a patient and his or her physician. However, patients with complex or chronic medical problems are often cared for by a team of professionals from multiple disciplines. Little is known about the process of making ethical decisions between patients and teams of healt...
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_0495_edmiit_2.3.co_2
更新日期:1995-11-01 00:00:00
abstract:OBJECTIVES:Previous research in the field of cleft lip and/or palate (CL/P) has indicated a high prevalence of common health concerns, functional difficulties, and additional conditions known to affect long-term physical health, cognitive development, and psychological well-being. The aim of the present study was to ex...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665620944758
更新日期:2021-02-01 00:00:00
abstract::The present study, part of an ongoing investigation of normal and dysmorphic development of the human fetal oronasal capsule, examined the rate of growth of the vomer. For comparative purposes, 29 human fetal specimens (20 "normal" and 9 cleft lip and palate [CLP]) were celloidin embedded, sectioned, stained with hema...
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_1992_029_0038_grotvi_2.3.co_2
更新日期:1992-01-01 00:00:00
abstract::Cleft lip and palate (CLP) is the most common congenital craniofacial abnormality. Obstructive sleep apnea syndrome (OSAS) is a highly prevalent but underdiagnosed disease and is frequently associated with craniofacial anomalies. There are few studies describing the sleep breathing pattern of children with CLP. This s...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665617726538
更新日期:2018-02-01 00:00:00
abstract:OBJECTIVE:The Kay Pentax nasometer uses a separator plate that touches the philtrum of a patient to separate the nasal and oral sound energies for nasalance measurement. However, the separator plate can restrict the natural movement of the patient's upper lip and generate unpleasant pressure on the patient's philtrum. ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665620953340
更新日期:2020-09-14 00:00:00
abstract:OBJECTIVE:The aim of this study was to examine experimental tooth movement into regenerated bone in alveolar cleft with mesenchymal stem cells and a granulated carbonated hydroxyapatite scaffold. DESIGN:An artificial bone defect was created bilaterally in upper incisor regions of beagle dogs to simulate alveolar cleft...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/12-232
更新日期:2015-07-01 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:OBJECTIVES:Digit ratio (2D:4D) has been considered to be a marker in studies evaluating an individual's susceptibility to diseases, especially those diseases that show sex differences in their occurrence. We aimed to assess whether 2D:4D ratios are associated with nonsyndromic cleft lip and/or palate (NSCL/P) and verif...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/15-266
更新日期:2017-09-01 00:00:00
abstract:OBJECTIVE:The concept of using a skull as the armature upon which to reconstruct a face has been understood for many years. The objective of this study was to blindly test this technique by using a skull that was reconstructed from the computed tomography (CT) scans of a living 48-year-old man. DESIGN:The patient had ...
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_2001_038_0317_frotas_2.0.co_2
更新日期:2001-07-01 00:00:00
abstract::A national survey was conducted concerning methods used for the evaluation of velopharyngeal function with emphasis on the role of nasendoscopy. Forty-five percent of questionnaires were returned. Ninety percent of the responding teams indicated that nasendoscopy was available. Sixty-one percent agreed that endoscopy ...
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_1993_030_0035_roasoc_2.3.co_2
更新日期:1993-01-01 00:00:00
abstract:BACKGROUND:Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocia...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665618769660
更新日期:2019-02-01 00:00:00
abstract::A mother, son, and daughter are presented, in whom serial photographs document an insidious and late onset of exorbitism and midfacial retrusion consistent with a diagnosis of familial nonsyndromic craniosynostosis. Papilledema was found in the 4.5-year-old daughter because of increased intracranial pressure secondary...
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_1993_030_0401_ioofc_2.3.co_2
更新日期:1993-07-01 00:00:00
abstract:OBJECTIVE:To present a classification and treatment protocol for cleft lip and palate patients with midface hypoplasia. DESIGN:Retrospective case series. SETTING:Craniofacial center. PATIENTS:The study included 133 patients with cleft lip and palate and maxillary hypoplasia treated with Le Fort I osteotomy between J...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-161.1
更新日期:2009-11-01 00:00:00