Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

Klassen, Anne F.; Riff, Karen W. Y. Wong; Longmire, Natasha M.; Albert, A; Allen, Gregory C.; Aydın, Mustafa Asım; Baker, Stephen B.; Cano, Stefan; Chan, Andrew; Courtemanche, Douglas J.; Dreise, Marieke M.; Goldstein, Jesse A.; Goodacre, Tim; Harman, K. E.; Munill, Montserrat; Mahony, Aisling O; Aguilera, Mirta Palomares; Peterson, Petra; Pusic, Andrea L.; Slator, Rona; Stiernman, Mia; Tsangaris, Elena; Tholpady, Sunil S.; Vargas, Federico; Forrest, Christopher R.

doi:10.1503/cmaj.170289

Cited by 104 publications

(159 citation statements)

References 36 publications

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“…First, the content for this new module of the FACE-Q was developed with patients from developed countries only. However, the CLEFT-Q scales were developed and tested with children with CL/P in several lower middle-income countries [4][5][6] and were shown here to have content validity for other facial conditions. Second, because the more specific scales were shown to only patients for whom they were deemed relevant, some scales were refined based on input from more patients than other scales.…”

Section: Discussionmentioning

confidence: 99%

“…Specifically, the same two qualitative researchers conducted all qualitative and cognitive interviews and performed the data analysis. Finally, our study builds upon a strong foundation of research conducted to develop a series of PROMs for plastic and reconstructive surgery populations [4][5][6][7][8]27,28,30,31 that includes the adult FACE-Q with modules for aesthetic treatments, 8 head and neck cancer, 27 and skin cancer. 28…”

Section: Discussionmentioning

confidence: 99%

“…In the field-test study that involved 2434 participants with CL/P from 12 countries, the CLEFT-Q evidenced strong psychometric properties. 6 Our team has now created a new module of the FACE-Q 7,8 for children and young adults with facial conditions, including facial paralysis, ear anomalies, and a broad range of skeletal and soft tissue conditions. Given the shared experience of living with a facial difference, we hypothesized that across different conditions, including CL/P, participants would express common concerns, as well as concerns relevant to specific conditions.…”

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confidence: 99%

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Development of a New Module of the FACE-Q for Children and Young Adults with Diverse Conditions Associated with Visible and/or Functional Facial Differences

et al. 2017

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Appearance and facial function are concepts not well addressed in current pediatric patient-reported outcome measures (PROM) for facial conditions. We aimed to develop a new module of the FACE-Q for children/young adults with facial conditions that include ear anomalies, facial paralysis, skeletal conditions, and soft tissue conditions. Semi-structured and cognitive interviews were conducted with patients aged 8–29 years recruited from craniofacial centers in Canada, USA, UK, and Australia. Interviews were used to elicit new concepts and to obtain feedback on CLEFT-Q scales hypothesized to be relevant to other facial conditions. Interview data were recorded, transcribed, and coded. Experts were emailed and invited to provide feedback via Research Electronic Data Capture (REDCap). Eighty-four participants and 43 experts contributed. Analysis led to the development of a conceptual framework and 14 new scales that measure appearance, facial function, health-related quality of life, and adverse effects of treatment. In addition, 12 CLEFT-Q scales were determined to have content validity for use with other facial conditions. Expert input led to minor changes to scales and items. This new FACE-Q module for children/young adults is being field-tested internationally. Once finalized, we anticipate this PROM will be used to inform clinical practice and research studies.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

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Development of a New Module of the FACE-Q for Children and Young Adults with Diverse Conditions Associated with Visible and/or Functional Facial Differences

et al. 2017

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“…It has been shown to be a valid and reliable measure for individuals aged 8-29 years with cleft lip and/or palate. 35 Depression, Anxiety and Stress Scale (DASS 21) (for renal transplant patients, those with substance use issues, and control study)…”

Section: Cleft-q Version 13 (For Those With Craniomaxillofacial Deformentioning

confidence: 99%

Protocol for psychosocial screening of adolescents and young adults with chronic illness

D'Emden

McDermott

Poulson

et al. 2019

Internal Medicine Journal

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Background: One in five adolescents and young adults (AYA) has a chronic health condition necessitating on-going engagement with healthcare systems. Despite increasing prevalence there remains limited understanding of the burden of illness they experience. Living with a chronic illness can challenge healthy adolescent development, with the unique health and developmental issues affecting AYA requiring different responses from the healthcare system. Aims:To examine and compare the burden of illness in this group across a large range of chronic health conditions. Methods: In a dedicated health service for AYA aged 15-25 years with chronic health conditions, (13-25 years for those with substance use issues) we detail a protocol where demographics, general health, disease-specific indicators and comprehensive psychosocial variables will be collected. The health conditions include chronic gastrointestinal disease, cystic fibrosis, chronic rheumatic disease, phenylketonuria, craniomaxillofacial deformities, renal transplant patients and problematic substance use. Results will be compared to AYA without chronic illness and AYA with diabetes.Results: This protocol outlines a comprehensive screening study for AYA with a large range of chronic health conditions, inclusive of medical, mental health, impairment and quality of life variables. It will inform service planning and provide a foundation upon which allied health service requirements (e.g. psychology) can be based. Whilst currently cross-sectional we anticipate further utility in broadening outcomes to include non-physical illness-related constructs. Conclusions:The commonalities and differences between conditions will be examined to facilitate efficiencies of scale for systems and supports. Further iterations including quantifying access to allied health services will facilitate studying the impact of such interventions on treatment adherence and improving psychosocial functioning, quality of life and disease outcomes.

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“…Cleft lip, with or without a cleft palate, is the second most common global birth defect, affecting 1.7 in every 1000 births [1]. A substantial percentage of skeletally mature patients (20-75%) [2][3][4] present visible skeletofacial deformities and cleft-related psychosocial problems that contribute to social discrimination and stigmatization [5,6], requiring appropriate treatment [2][3][4]. Orthognathic surgery (OGS) is considered the mainstay of treatment due to the positive impact on oral function, facial appearance, and psychosocial health [7][8][9].…”

Section: Introductionmentioning

confidence: 99%

Modern Surgery-First Approach Concept in Cleft-Orthognathic Surgery: A Comparative Cohort Study with 3D Quantitative Analysis of Surgical-Occlusion Setup

Seo

Denadai

Pai

et al. 2019

JCM

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Despite the evident benefits of the modern surgery-first orthognathic surgery approach (reduced treatment time, efficient tooth decompensation, and early improvement in facial esthetics), the challenge of the surgical-occlusion setup acts as a hindering factor for the widespread and global adoption of this therapeutic modality, especially for the management of cleft-skeletofacial deformity. This is the first study to assess three-dimensional (3D) quantitative data of the surgical-occlusion setup in surgery-first cleft-orthognathic surgery. This comparative retrospective study was performed on 3D image datasets from consecutive patients with skeletal Class III deformity who had a unilateral cleft lip/palate (cleft cohort, n = 44) or a noncleft dentofacial deformity (noncleft cohort, n = 22) and underwent 3D computer-assisted single-splint two-jaw surgery by a single multidisciplinary team between 2014 and 2018. They received conventional orthodontics-first or surgery-first approaches. 3D quantitative characterization (linear, angular, and positional measurements) of the final surgical-occlusion setup was performed and adopted for comparative analyses. In the cleft cohort, the occlusion setup in the surgery-first approach had a significantly (all p < 0.05) smaller number of anterior teeth contacts and larger incisor overjet compared to the conventional approach. Considering the surgery-first approach, the cleft cohort presented significantly (all p < 0.05) larger (canine lateral overjet parameter) and smaller (incisor overjet, maxillary intercanine distance, maxillary intermolar distance, ratio of intercanine distance, and ratio of intermolar distance parameters) values than the noncleft cohort. This study contributes to the literature by providing 3D quantitative data of the surgical-occlusion setup in surgery-first cleft-orthognathic surgery, and delivers information that may assist multidisciplinary teams to adopt the surgery-first concept to optimize cleft care.

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Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries

Cited by 104 publications

References 36 publications

Development of a New Module of the FACE-Q for Children and Young Adults with Diverse Conditions Associated with Visible and/or Functional Facial Differences

Development of a New Module of the FACE-Q for Children and Young Adults with Diverse Conditions Associated with Visible and/or Functional Facial Differences

Protocol for psychosocial screening of adolescents and young adults with chronic illness

Modern Surgery-First Approach Concept in Cleft-Orthognathic Surgery: A Comparative Cohort Study with 3D Quantitative Analysis of Surgical-Occlusion Setup

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