The Quality of Life in Adult Patients With Syndromic Craniosynostosis From Their Perspective

Venugopal, Anuradha; Horton, Johan; Rodrigues, Desiderio; Nishikawa, Hiroshi; White, Nicholas J.; Solanki, Guirish A.; Noons, Peter; Evans, Martin; Dover, Stephen

doi:10.1097/scs.0000000000002886

Cited by 20 publications

(9 citation statements)

References 10 publications

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“…These variables may be determinant of the outcomes among craniosynostoses patients, as well, in the future. However, in cases with syndromic craniosynostosis, facial differences may not influence the subjective QOL 15 .…”

Section: Introductionmentioning

confidence: 99%

Outcomes of 40 Nonsyndromic Sagittal Craniosynostosis Patients as Adults: A Case-Control Study With 26 Years of Postoperative Follow-up

et al. 2018

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Section: Introductionmentioning

confidence: 99%

Outcomes of 40 Nonsyndromic Sagittal Craniosynostosis Patients as Adults: A Case-Control Study With 26 Years of Postoperative Follow-up

et al. 2018

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“…Another characteristic concomitant deformation is polisyndactylia of the feet and hands and/or other limbs abnormalities concerning bones and joints. The parents of patients, as well as patients themselves, often indicate that, in addition to their physical consequences, the above deformities also have psychological and social consequences [16,17,18].…”

Section: Discussionmentioning

confidence: 99%

Subjective Assessment of Head and Facial Appearance in Children with Craniosynostoses after Surgical Treatment

Larysz

Nieroba

2018

Healthcare

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Background: Craniosynostoses are congenital defects in the construction of the skull involving premature fusion of one or more cranial sutures. Premature fusion of sutures causes characteristic skull deformation(s). This affect the structure and thus the appearance of the entire head and face. The aim of this study was to analyze parents’ subjective assessments of head and facial appearance in children with craniosynostoses before and after surgery. Parents also assessed the interpersonal relationship of their children with peers and adults (after surgery). Methods: This study was conducted among parents of 230 children treated in Poland, in two multidisciplinary centers. Detailed statistical analysis was conducted among children who had undergone surgery. Independent variables were age (at survey) of the child (three years and less, four years, and five years and more) and type of craniosynostosis (isolated and syndromic). A chi-square independence test was used. Data was collected using surveys. Results: In the opinion of most parents, the appearance of their child’s head and face after surgery did not differ or differed only slightly from that of their peers. The results of subjective assessment of appearance of children’s face and head after reconstructive treatment remains comparable in three subgroups of patients according to the age. It seems that specific head shape according to the type of craniosynostosis does not have an impact on relations with peers and adults. Conclusion: Surgical treatment of children with craniosynostoses improves the appearance of their head and face. This improvement seems not to depend on the type of isolated craniosynostosis, and is constant over time.

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“…Even though this condition has an enormous influence on the patient's life, only a few studies have had long-term follow-ups through adolescence and adulthood [23]. Few studies have investigated how metopic or sagittal, non-syndromic craniosynostosis affects the aesthetics, self-esteem, and psychological well-being of adult patients [5,19,[23][24][25].…”

Section: Introductionmentioning

confidence: 99%

Appearance or attitude: what matters to craniosynostosis patients? Association of self-esteem, depressive symptoms, and facial aesthetics in patients with sagittal and metopic synostosis

et al. 2022

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Purpose The aim of this study was to investigate the presence of depressive symptoms and self-esteem, and their association with facial asymmetry in adults who were operated on in early childhood due to metopic and sagittal craniosynostosis. Methods The study population consisted of 49 non-syndromic patients of whom 41 had premature fusion of the sagittal and 8 of metopic suture. There were 64 controls from the Finnish National Register. Self-esteem, depressive symptoms, and subjective satisfaction with one’s appearance were evaluated by using the Rosenberg self-esteem questionnaire (RSE), the short form of Beck Depression Inventory (R-BDI), and a purpose-designed questionnaire on satisfaction with facial and overall appearance. Aesthetic evaluation was done from standard photographs using panels. The facial symmetry was calculated by using 3D photogrammetric methods. Results Patients did not have a lower self-esteem or experience significantly more moderate or severe depressive symptoms. However, 20% of the patients and 6% of the controls (p = 0.041) experienced mild depressive symptoms. There was no difference between self-assessed evaluation of appearance between the groups. Only weak correlation was found between facial asymmetry and RSE or R-BDI results (cc = 0.27–0.42, p < 0.05). The self-assessed evaluation of facial and overall appearance correlated strongly with the R-BDI results. Conclusion Non-syndromic craniosynostosis patients are as satisfied with their appearance in adulthood as the control group and do not experience a lower self-esteem or more depressive symptoms. Facial asymmetry does not correlate with low self-esteem or clinically significant depressive symptoms in adulthood. Subjective evaluation of one’s appearance correlated with depressive symptoms. Age and gender do not influence the former results. Overall, patients are satisfied with their appearance.

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The Quality of Life in Adult Patients With Syndromic Craniosynostosis From Their Perspective

Abstract: The counterintuitive findings show that adult syndromic patients with similar cognitive capacity perceive their quality of life as being above that experienced in a normative UK nonsyndromic population with no correlation to the degree of facial difference.

Cited by 20 publications

References 10 publications

Outcomes of 40 Nonsyndromic Sagittal Craniosynostosis Patients as Adults: A Case-Control Study With 26 Years of Postoperative Follow-up

Outcomes of 40 Nonsyndromic Sagittal Craniosynostosis Patients as Adults: A Case-Control Study With 26 Years of Postoperative Follow-up

Subjective Assessment of Head and Facial Appearance in Children with Craniosynostoses after Surgical Treatment

Appearance or attitude: what matters to craniosynostosis patients? Association of self-esteem, depressive symptoms, and facial aesthetics in patients with sagittal and metopic synostosis

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