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::Securing an endotracheal tube in completely edentulous patients undergoing maxillofacial surgery can pose difficulties. In this report, a readily available and easy method of securing the endotracheal tube to gums of the teeth using the suture in such a circumstance is described. This technique has been used successfu...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-276.1
更新日期:2010-05-01 00:00:00
abstract:OBJECTIVE:We histologically evaluated iliac particulate cancellous bone and marrow (PCBM) grafted to alveolar clefts in five young adults with cleft lip and palate. PATIENTS AND METHODS:Five young adults with cleft lip and palate underwent secondary alveolar bone grafting. The mean age of the patients was 21.2 years (...
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_2000_037_0055_heoaip_2.3.co_2
更新日期:2000-01-01 00:00:00
abstract:OBJECTIVE:To evaluate speech in adults treated for unilateral cleft lip and palate with one-stage or two-stage palate closure and compare the speech of the patients with that of a noncleft control group. DESIGN:Cross-sectional study with long-term follow-up. PARTICIPANTS/SETTING:All unilateral cleft lip and palate pa...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/15-037
更新日期:2017-11-01 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:OBJECTIVE:To determine whether there are differences in the anatomical cleft measurements between patients with isolated cleft palate (CP) with or without Pierre Robin sequence (PR) and those with cleft lip and palate (CLP). DESIGN:Prospective case series. SETTING:Tertiary care university-based medical center. PATIE...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-255
更新日期:2016-05-01 00:00:00
abstract:OBJECTIVE:To evaluate and compare the oral hygiene and periodontal status in children with unilateral and bilateral cleft lip and palate treated in Łódź, Poland, and Erlangen, Germany. DESIGN:Oral health was assessed by the presence of dental plaque, pocket depth, clinical attachment levels, and pathologic teeth mobil...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/05-137
更新日期:2007-01-01 00:00:00
abstract::Although the primary cause of hypernasality is impaired velopharyngeal (VP) function, a variety of other factors influence the outcome perceived by the listener. The purpose of the current study was to assess the relationship between oral-nasal resonance balance and (1) velopharyngeal orifice area; (2) nasal airflow r...
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_1994_031_0257_havi_2.3.co_2
更新日期:1994-07-01 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:Routine hospital admission following pharyngeal flap (PF) to correct velopharyngeal insufficiency (VPI) is the standard at most hospitals. Nevertheless, there is increasing resistance from third-party providers to approve stays longer than a "short stay" (23-hour) observation period. The purpose of the curren...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665617732776
更新日期:2018-03-01 00:00:00
abstract::Monobloc Le Fort III distraction osteogenesis allows superior skeletal advancement in treating severe syndromic craniosynostosis. We report a rare orbital complication in a 3-year-old boy with Crouzon syndrome who developed right-eye exodeviation with limited abduction during the intradistraction period following this...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-013
更新日期:2015-07-01 00:00:00
abstract::This clinical report presents the prosthetic rehabilitation of a congenital auricular defect. The rehabilitation was initially performed with an adhesive retained silicone prosthesis. After careful evaluation of the patient's retentive needs, two endo-osseous craniofacial implants were placed in the mastoid region. Af...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/13-074
更新日期:2015-03-01 00:00:00
abstract::A review of the studies of the caries prevalence and periodontal health of patients with cleft lip and palate (CLP) revealed that only five investigations of caries prevalence in CLP patients included children. One reported that CLP children did not have a higher caries prevalence in the permanent dentition, whereas m...
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_1998_035_0248_tohocw_2.3.co_2
更新日期:1998-05-01 00:00:00
abstract:OBJECTIVE:To evaluate the efficacy of presurgical orthopedic treatment three dimensionally, we previously developed a novel measuring system and described the efficacy of the treatment until 18 months of age. The aim of this study was to compare palatal configuration in complete unilateral cleft lip and palate (UCLP) i...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/1545-1569_2000_037_0185_cbpciu_2.3.co_2
更新日期:2000-03-01 00:00:00
abstract::Experimental rabbit models of postnatal coronal suture (CS) synostosis have helped make significant contributions towards the understanding and surgical management of human congenital craniosynostosis. The present study compares craniofacial growth patterns in animals with experimental CS immobilization and in a rabbi...
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_0121_cbcssi_2.3.co_2
更新日期:1993-03-01 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:OBJECTIVE:To investigate and compare the effects of maxillary protraction therapy on Class III patients with unilateral cleft lip and palate (UCLP) and Class III patients with noncleft. DESIGN:Prospective controlled clinical trial. PATIENTS:Twenty-six Class III patients with UCLP (mean age: 10.32 ± 1.29 years) and 26...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665620954058
更新日期:2020-09-28 00:00:00
abstract:OBJECTIVE:Diminished maxillary growth is a consequence of labiopalatal repair, and many patients with cleft lip and palate require Le Fort I advancement. The goal of this study was to determine the frequency of maxillary hypoplasia as measured by need for Le Fort I. SUBJECTS:Retrospective cohort study of males born be...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/06-075.1
更新日期:2007-07-01 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:OBJECTIVES:To investigate salivary proteins with proteomic technologies to evaluate protein composition differences between samples with cleft lip and palate and healthy controls. DESIGN, PARTICIPANTS:Matrix-assisted laser desorption/ionization tandem time-of-flight (MALDI TOF/TOF) mass spectrometry was used as a high...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/10-135
更新日期:2012-09-01 00:00:00
abstract::The objective of this study is to present the use of surgical navigation in the selective removal of the anterior table of the frontal sinus in a patient with pneumosinus dilatans. A 16-year-old boy presented with progressive deformity of the forehead and left postauricular sulcus due to pneumosinus dilatans. Reconstr...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/06-144.1
更新日期:2007-09-01 00:00:00
abstract:OBJECTIVE:To examine the three-dimensional morphology of internal structures of the craniofacial region and present the orthodontic problems in an unusual case with nasal aplasia. PATIENT:The patient was an 11.5-year-old boy with aplasia of the nose and nasal cavity with extremely constricted nasopharyngeal airway. He...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/02-112
更新日期:2004-03-01 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:OBJECTIVE:Premaxillary distraction osteogenesis was introduced using intraoral devices to correct maxillary hypoplasia and lengthen the alveolar bone horizontally in a patient with unilateral cleft lip and palate. METHODS:For premaxillary distraction osteogenesis, Le Fort I osteotomy was performed. Vertical osteotomy ...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/14-105
更新日期:2015-07-01 00:00:00
abstract:OBJECTIVE:Imaging systems for patients with cleft palate typically are not portable, but are essential to obtain an audiovisual record of nasoendoscopy and otoscopy procedures. Practitioners who evaluate patients in rural, remote, or otherwise medically underserved areas are expected to obtain audiovisual recordings of...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/05-063.1
更新日期:2007-03-01 00:00:00
abstract:OBJECTIVE:TO explore the factors that predict psychosocial adjustment in young people with a cleft and their parents. DESIGN, PARTICIPANTS, SETTING: The study used a cross-sectional postal questionnaire design involving young people aged between 11 and 16 and their parents from two cleft services. Data are presented fo...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/08-094
更新日期:2011-01-01 00:00:00
abstract:OBJECTIVE:Distraction osteogenesis is a good technique to correct micrognathia and to prevent tracheostomy in patients with Pierre Robin sequence. However, the airway must be maintained during the distraction period. The purpose of this study was to determine the usefulness of temporary tongue-lip traction during the i...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/07-106.1
更新日期:2009-01-01 00:00:00
abstract:OBJECTIVE:This report describes the design and printing of personalized nasal stents for cleft lip using 3-dimensional (3D) technology. MATERIALS AND METHODS:We used silicone rubber to make the impressions, a 3D laser scanner to obtain 3D data, and Dental SG resin cartridges as printing material. We printed the person...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1177/1055665618782804
更新日期:2019-04-01 00:00:00
abstract::We describe a case of the combined use of acellular dermal matrix and pedicled buccal fat pad (BFP) in a wide U-shaped cleft palate repair. Acellular dermal matrix was used as a "patch" repair for the nasal mucosa defect as opposed to the conventional inlay graft. The advantages include reduced cost and a smaller avas...
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:10.1177/1055665619851915
更新日期:2019-11-01 00:00:00
abstract::Nonsyndromic orofacial clefting (OFC) describes a range of phenotypes that represent the most common craniofacial birth defects in humans, with an overall birth prevalence of 1:700 live births. Because of the lifelong negative implications on health and well-being associated with OFC and the numbers of people affected...
journal_title:The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
pub_type: 杂志文章
doi:10.1597/15-029
更新日期:2016-09-01 00:00:00
abstract::This paper reviews the changes of adolescence that affect neuroendocrine and neurophysiologic functions. Normal variability in onset and progression of pubertal stages is discussed. The effects of hypothalamic and pituitary maturation and resulting changes in circulating hormone levels at the onset of secondary sexual...
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_1995_032_0096_nancoa_2.3.co_2
更新日期:1995-03-01 00:00:00