Development of a valid and reliable instrument for the assessment of quality of life in parents of children with clefts

Vuletić, Marko; Gabrić, Dragana; Sušić, Mato; Verzak, Željko; Malčić, Ana Ivanišević; Pelivan, Ivica; Knežević, Predrag

doi:10.1016/j.jormas.2019.11.002

Cited by 2 publications

(5 citation statements)

References 29 publications

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“…Caring for a child with CL/P can have a negative impact on parents and caregivers’ quality of life [ 8 ]. It is estimated that afflicted families will need to make social and personal adjustments before beginning treatment [ 9 ].…”

Section: Discussionmentioning

confidence: 99%

“…The Questionnaire for the evaluation of quality of life of parents of CL/P patients [ 8 ] was adapted and translated into Romanian for the parents of the patients who presented to the maxillofacial surgery department for the follow-up examination. Before each participant was enrolled in the trial, the parents provided written informed consent.…”

Section: Methodsmentioning

confidence: 99%

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The quality of life after cleft lip and palate surgery

Opriș¹,

Băciuț²,

Bran³

et al. 2022

Medicine and Pharmacy Reports

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Background and aims. Labio-maxillo-palatal clefts represent one of the most common congenital malformations, which manifests through aesthetic, functional and psycho-social alterations. The long course of multidisciplinary treatments represent a psycho-emotional and financial burden for both the patient and his family, being an important factor in the complex management of these patients. The study aims to assess the quality of life of parents of children with clefts and the psychosocial impact on the family and society. Methods. The study included 40 subjects who met the inclusion criteria for this study. Following patient informed consent and the approval of the ethics committee, the data were collected by applying the quality-of-life evaluation questionnaire. The evaluation was performed using the Likert scale (1 - not at all to 5 - very satisfactory), and the data were statistically processed. Results. Most of the questionnaires were completed by the mother, who accompanied the child to the regular check-up; 58% of parents believe that their social life is not affected by having a child with a cleft, and 83% say that interfamilial relationships have not been affected. Most parents consider that the postoperative result was very good, which led to improved psycho-social integration of the child. Conclusions. The study confirmed an acceptable quality of life for the children’s parents, which was not influenced by the family presence of a child with a cleft. At the same time, the excessive care of the parents for the child with the cleft was confirmed. The postoperative improvement of the aesthetic aspect led to a much better psycho-emotional integration of the child in the society.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

The quality of life after cleft lip and palate surgery

Opriș¹,

Băciuț²,

Bran³

et al. 2022

Medicine and Pharmacy Reports

View full text Add to dashboard Cite

show abstract

“…Affected individuals have decreased facial growth, dental abnormalities, language disorders, hearing problems, and difficulties in psychological well‐being and social relationships 1 . Thus, CL/P is associated with an increased risk of psychosocial problems, which include anxiety, social inhibition, depression, low self‐esteem, externalizing problems, and attention‐deficit/hyperactivity disorder 2‐4 …”

Section: Introductionmentioning

confidence: 99%

“…QoL depends on perceived health status and should be assessed by instruments that examine the impact of the disease and treatment modalities, while integrating both objective and subjective health indicators 4 . Particularly in CL/P, HRQoL should assess the direct impact of oral conditions on outcomes related to appearance, oral function, and social interactions, including an assessment of the patient's perception of treatment outcomes 1,12 .…”

Section: Introductionmentioning

confidence: 99%

“…Particularly in CL/P, HRQoL should assess the direct impact of oral conditions on outcomes related to appearance, oral function, and social interactions, including an assessment of the patient's perception of treatment outcomes 1,12 . Examples of specific CL/P measures that assess at least some of these aspects of HRQoL are the CLEFT Questionnaire 9 and the Quality of Life in Adolescents with Cleft Assessment 4 . Importantly, although they both assess the status of patients after surgery and treatment, they do not measure the perceived changes in comparison with their status before surgery.…”

Section: Introductionmentioning

confidence: 99%

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Adaptation of the Quality of Life Adolescent Cleft Questionnaire for Spanish children and adolescents with cleft lip and/or palate

Ruiz-Guillén

Suso‐Ribera

Romero-Maroto

et al. 2021

Int J Paed Dentistry

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Background The Quality of Life Adolescent Cleft Questionnaire is a measure of quality of life in cleft lip/palate (CL/P) and includes items on pre‐treatment and post‐treatment status. Items, however, were originally organized in a factor structure that prevents a formal pre‐treatment to post‐treatment comparison. Additionally, the questionnaire was tested in older patients. Aim We aimed to explore a factor structure that allows a comparison of pre‐ to post‐treatment status in children and adolescents with CL/P. Design The sample comprised 60 children and adolescents with CL/P. The scale was divided into two groups of items (24 comparing pre‐treatment and post‐treatment status and 26 measuring current quality of life). Two different exploratory and confirmatory analyses were conducted (one for each group of items). Sources of criterion validity were investigated with measures of self‐esteem and self‐efficacy. Results The results supported a 6‐factor structure for the pre‐treatment and post‐treatment items. In the second group of items, 9 items were removed due to inadequate functioning and a final 4‐factor solution was obtained. The criterion validity of factors was good. Conclusion The proposed factor solution might be more useful to detect the perceived satisfaction in different areas and can be used in younger patients.

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Development of a valid and reliable instrument for the assessment of quality of life in parents of children with clefts

Cited by 2 publications

References 29 publications

The quality of life after cleft lip and palate surgery

The quality of life after cleft lip and palate surgery

Adaptation of the Quality of Life Adolescent Cleft Questionnaire for Spanish children and adolescents with cleft lip and/or palate

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