A comparison of health‐related quality of life in 5‐ and 10‐year‐old Swedish children with and without cleft lip and/or palate

Sundell, Anna Lena; Törnhage, Carl-Johan; Marcusson, Agneta

doi:10.1111/ipd.12253

Cited by 14 publications

(13 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This result corroborated several studies on the OHRQol of patients with clefts or facial alteration [17]. On the other hand, several studies with smaller cohorts did not show this difference [18, 19].…”

Section: Discussionsupporting

confidence: 89%

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

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.

show abstract

Section: Discussionsupporting

confidence: 89%

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

show abstract

“…These similar levels of satisfaction are in line with earlier publications on comparisons of SWA scores between CL/P population and control population (Berger and Dalton, 2009;Feragen et al, 2015;Crerand et al, 2017). An earlier comparison of Swedish children also showed similar levels of general HRQOL in the CL/P population as in a control population (Sundell et al, 2017). The results may reflect some confounding factors discussed in earlier studies, such as gratitude or unwillingness to disappoint cleft teams caring for them.…”

Section: Discussionsupporting

confidence: 63%

Scores of the Cleft Hearing, Appearance and Speech Questionnaire (CHASQ) in Swedish Participants With Cleft lip and/or Cleft Palate and a Control Population

Stiernman

Klintö

Persson

et al. 2020

The Cleft Palate-Craniofacial Journal

View full text Add to dashboard Cite

Objective: The primary aim of this study was to investigate whether there was any difference in scores of the Cleft Hearing, Appearance and Speech Questionnaire (CHASQ) between patients with cleft lip and/or cleft palate (CL/P) and a control population. The second aim was to compare CL/P and control population scores in this study with a British norm CL/P population. Design: Single-site, cross-sectional study with an age-matched control population. Setting: Participants were recruited from a hospital, a school, and a sports club. They answered the CHASQ in the hospital or at home. Participants: Sixty-four participants with CL/P (7-19 years of age) and a control population of 56 participants without CL/P (9-20 years of age). Main Outcome Measure: CHASQ. Results: There was no statistically significant difference in satisfaction with cleft-related features between the CL/P and the control population. Participants with CL/P were significantly more satisfied with non-cleft-related features than the control population. Cleft Hearing, Appearance and Speech Questionnaire scores were also similar to earlier established British normative data of a CL/P population. Conclusion: The results indicated that children and young people with CL/P were as satisfied with their appearance, hearing, and speech as children and young people without CL/P. Swedish CHASQ scores were also similar to British scores.

show abstract

“…[42][43][44][45] Because cleft-related treatments can substantially change appearance and speech, using scales that lack content validity for cleft lip and/or palate could make it appear that interventions do not improve outcomes, when in fact the scales might not be asking the right questions. The CLEFT-Q provides clinicians and researchers with a rigorously developed instrument they can use to measure clefts and the impact of treatment.…”

Section: Resultsmentioning

confidence: 99%

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

Riff

Longmire

et al. 2018

CMAJ

108

View full text Add to dashboard Cite

A comparison of health‐related quality of life in 5‐ and 10‐year‐old Swedish children with and without cleft lip and/or palate

Abstract: Both 5- and 10-year-old Swedish children with CL/P had HRQoL in the normal reference interval. Their general life situations were well adjusted to their clefts, but the older children with CL/P felt more excluded and less supported by peers.

Cited by 14 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

Scores of the Cleft Hearing, Appearance and Speech Questionnaire (CHASQ) in Swedish Participants With Cleft lip and/or Cleft Palate and a Control Population

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

Contact Info

Product

Resources

About