What Matters to Patients With Cleft Lip and/or Palate

Riff, Karen W. Y. Wong; Tsangaris, Elena; Goodacre, Tim; Forrest, Christopher R.; Lawson, Jessica L.; Pusic, Andrea L.; Klassen, Anne F.

doi:10.1177/1055665617732854

Cited by 73 publications

(45 citation statements)

References 31 publications

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“…The literature showed that appearance and speech were the most frequently discussed points for children with facial clefts. Individuals with facial clefts may struggle with the psychological and social sequels of having differences in their appearance and speech [28].…”

Section: Discussionmentioning

confidence: 99%

Oral health related quality of life of children and adolescents affected by rare orofacial diseases: a questionnaire-based cohort study

Friedlander¹,

Berdal²,

Boizeau³

et al. 2019

Orphanet J Rare Dis

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Background Rare diseases affecting the teeth, the oral cavity and the face are numerous, each of them present specific characteristics, and is a life-long condition. The aim of the study was to assess the association between Oral health-related quality of life (OHRQoL), and demographic characteristics, clinical and dental factors, and psycho-social characteristics to investigate that oral symptoms are not the main factors underlying a decrease in OHRQoL. Material and methods We conducted a national cohort study in French centres for rare diseases (RD) specialized in orofacial diseases. The inclusion criteria were: to have received care in RD centres over the last 5 years (2012–2017) and to have been between 6 and 17 years of age on September 1, 2017. Patients were invited to answer a questionnaire composed of socio-demographic, clinical and dental questions, psychosocial questions and then fill in the Child-OIDP Index. At the end of the questionnaire, a free space was left for the patient to add a verbatim comment to provide qualitative data. Thematic analysis was used to analyze the verbatim answers. Results Complete data were available for 110 patients. The sample included 44.5% boys and 55.5% girls. Ages ranged from 6 to 17 years old and 68.2% were between 6 to 12 years old and 31.8% were between 13 and 17 years old. Factor associated with a lower OHRQoL were: being a girl ( p = 0.03), renouncement to dental care for financial reasons ( p = 0.01), having syndromic disease (p = 0.01), having a problem with tooth shape and color (p = 0.03), feeling isolated, alone and different from other children ( p = 0.003 and p = 0.02). Qualitative analysis highlighted very little recourse to psychological care and patients reported great anxiety and fear about the future. Conclusion OHRQoL of children suffering from these diseases is impaired, especially from the psychosocial point of view but also from that of the course of treatment and access to care. There is a need to improve the legibility of care pathways and the financial coverage of treatments. Electronic supplementary material The online version of this article (10.1186/s13023-019-1109-2) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Oral health related quality of life of children and adolescents affected by rare orofacial diseases: a questionnaire-based cohort study

Friedlander¹,

Berdal²,

Boizeau³

et al. 2019

Orphanet J Rare Dis

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“…The CLEFT-Q has been validated for patients aged between 6 and 29 years in different countries in North America, Europe, and Asia (Tsangaris et al, 2017a; Wong Riff et al, 2017). It consists of a total of 171 items, divided into 13 scales, evaluating the appearance, health-related quality of life, and facial function and each subdomain represents an independently functioning scale (Wong Riff et al, 2018; Table 2). Normative values of this rigorously developed instrument have recently been published, in addition to the translation and cultural adaptation of the CLEFT-Q to 3 Spanish language varieties (Tsangaris et al, 2017b; Klassen et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

Aesthetics Assessment and Patient Reported Outcome of Nasolabial Aesthetics in 18-Year-Old Patients With Unilateral Cleft Lip

Mulder

Mosmuller

Vet

et al. 2019

The Cleft Palate Craniofacial Journal

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Objective: To determine if there is a correlation between objective nasolabial aesthetics assessment using the Cleft Aesthetic Rating Scale (CARS) and patient satisfaction. Design: Retrospective analysis of a generic satisfaction questionnaire and independent assessment by three cleft surgeons of the nasolabial area of these patients on 2D frontal photographs, using the CARS. Setting: The Vrije Universiteit Medical Center and The Academic Center for Dentistry Amsterdam. Patients: Thirty-nine 18-year old patients with a repaired complete or incomplete unilateral cleft lip, with or without a cleft palate, and a completed satisfaction questionnaire. Exclusion criteria were an incomplete questionnaire; a history of facial trauma; and congenital syndromes affecting facial appearance. Main Outcome Measures: The correlation between surgeon evaluation (on a 5-point Likert scale) and patient satisfaction (not, moderately or very satisfied) on nasolabial appearance was assessed using Spearman rho (ρ). Results: There was a negligible correlation between surgeon evaluation and patient satisfaction on nose assessment (ρ = 0.20) and a moderate correlation on lip assessment (ρ = 0.32). Conclusions: Most literature supports this discrepancy between different objective aesthetics evaluation methods and subjective patient-reported outcome measures, suggesting there are factors playing a role in patient satisfaction that are impossible to objectify with assessment methods. Therefore, a strong emphasis should remain on clear communication between the physician and patient regarding their expectations, perception, and satisfaction of surgery results.

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“…CLEFT-Q was developed as a CL/P specific questionnaire through a process of review of existing PROMs in the field ( Klassen et al, 2012 ), by qualitative research of patients with CL/P from different countries ( Tsangaris et al, 2017 ; Wong Riff et al, 2018 ), field testing in 12 countries and, finally, analysis with Rasch measurement theory ( Klassen et al, 2018b ). It consists of 12 scales and 1 checklist with 6 to 12 items each.…”

Section: Methodsmentioning

confidence: 99%

Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate

Stiernman

Klintö

Persson

et al. 2020

The Cleft Palate Craniofacial Journal

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Objective: The primary aim of this study was to compare corresponding scores between 2 existing cleft-specific patient-reported outcome measures (PROMs)—Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q. The second aim of the study was to investigate patient opinion on the 2 PROMs. Design: Cross-sectional questionnaire study. Setting: Participants were recruited from a University Hospital. They answered CHASQ and CLEFT-Q either in the hospital or at home. Participants: Thirty-three participants with cleft lip and/or palate, aged 10 to 19 years. Main Outcome Measure: CHASQ and CLEFT-Q. Results: The CHASQ scores and the corresponding CLEFT-Q scores on appearance correlated significantly. Corresponding scores regarding speech did not correlate significantly. A majority, 15 (58%) participants, answered that they liked CLEFT-Q more than CHASQ, 18 participants (69%) thought CHASQ was easier to complete, and 19 (76%) thought CLEFT-Q would better inform health care professionals. Conclusion: Both instruments showed strengths and limitations. Clinicians will have to consider each instrument’s respective qualities when choosing to implement either PROM.

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What Matters to Patients With Cleft Lip and/or Palate

Abstract: A conceptual framework of concepts of interest to individuals with CL/P formed the basis of the scales in the CLEFT-Q. Each subdomain represents an independently functioning scale. Understanding what matters to patients is essential in guiding PRO measurement.

Cited by 73 publications

References 31 publications

Oral health related quality of life of children and adolescents affected by rare orofacial diseases: a questionnaire-based cohort study

Oral health related quality of life of children and adolescents affected by rare orofacial diseases: a questionnaire-based cohort study

Aesthetics Assessment and Patient Reported Outcome of Nasolabial Aesthetics in 18-Year-Old Patients With Unilateral Cleft Lip

Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate

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