Development of a Valid and Reliable Instrument for the Assessment of Quality of Life in Adolescents With Clefts - Detection of Potential Mental Health Issues

Vuletić, Marko; Marčinko, Darko; Vražić, Domagoj; Milošević, Milan; Dediol, Emil; Knežević, Predrag

doi:10.24869/psyd.2017.360

Cited by 5 publications

(4 citation statements)

References 30 publications

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“…The syndromic forms, more serious and disabling because they were sometimes associated with other motor and / or intellectual handicaps, required more intensive overall care [20].…”

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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“…The syndromic forms, more serious and disabling because they were sometimes associated with other motor and / or intellectual handicaps, required more intensive overall care [20].…”

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

View full text Add to dashboard Cite

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“…Recent studies show that reports of children on OHRQoL are reliable and valid. Instruments developed to measure the quality of life of children must also assess the impact of these problems on the quality of life of the family, as they are inseparable factors [13][14][15][16].…”

Section: Quality Of Life Instrument Evaluationmentioning

confidence: 99%

Quality of Life in Adolescents with Cleft Lip and Palate

Elmouden¹,

Elgasmi²,

Ousehal³

2020

Current Treatment of Cleft Lip and Palate

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The cleft lip and palate (CLP) is the second most common congenital anomaly in the world; therefore, understanding the quality of life in children and adolescents with this malformation is extremely important. The study of the quality of life in this population is based on how the patient feels about his condition and how it affects his general well-being depending on the problems he may encounter concerning bone growth, phonation, speaking, facial appearance, and social relationship. As part of a descriptive survey, the aim was to assess and study the quality of life of patients with labio-palatal clefts operated and undergoing medical management, as well as the quality of life perceived by their parents to evaluate the family impact of this dysmorphia. According to the studies, teenagers had the lowest quality of life rates in the items: physical appearance and self-esteem, so the psychological support for patients and their families with multidisciplinary treatment that meets standards, are the keys to improving the quality of life of this category of patients.

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Section: Introductionmentioning

confidence: 99%

“…Thus, adolescents with clefts may experience feelings or situations of rejection and discrimination, impaired self-esteem, depressive symptoms, anxious behavior, low acceptance, changes in self-concept and self-image, difficulty in social interaction, among others, culminating in a lower quality of life in addition to more prone to mental and/or psychological disorders. 5,6 Different studies carried out with children and adolescents with orofacial clefts are available. Among them, a quantitative investigation found depressive symptoms in children and adolescents with orofacial clefts, aged between seven and 17 years, in a geographically localized Brazilian population, with no statistically significant difference compared to those without clefts.…”

Section: Introductionmentioning

confidence: 99%

Adolescents with orofacial clefts: understanding their experiences

Gifalli,

Antonio,

Aparecida Pezzato da Silva

et al. 2024

Rev. paul. pediatr.

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Objective: To understand the experience of young people with orofacial clefts regarding life as an adolescent. Methods: Descriptive, qualitative study, developed in a Brazilian public and tertiary hospital, a reference center in the care of patients with craniofacial anomalies and related syndromes, between February and April 2019. The sample was defined by theoretical saturation. The following inclusion criteria were established: age between ten and 19 years old and having previously operated on orofacial cleft (lip and/or palate). Individuals with fissure associated with syndromes or other malformations were excluded. Data collection was performed through semi-structured interviews, which were audio recorded and transcribed in full. The trigger element was: how has it been for you to experience your adolescence? For the construction of the results, content analysis was used in the thematic modality. Results: Seventeen adolescents participated. From the speeches, three categories were revealed: interacting socially, feeling supported, and experiencing and facing prejudice. Conclusions: The biopsychosocial and conflicting complexity that adolescents with orofacial clefts experience was noticed, as well as the importance of receiving support and establishing modalities of situational coping.

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Development of a Valid and Reliable Instrument for the Assessment of Quality of Life in Adolescents With Clefts - Detection of Potential Mental Health Issues

Abstract: SUMMARY

Cited by 5 publications

References 30 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

Quality of Life in Adolescents with Cleft Lip and Palate

Adolescents with orofacial clefts: understanding their experiences

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