Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients

Dellenmark‐Blom, Michaela; Chaplin, John; Gatzinsky, Vladimir; Jönsson, Linus; Wigert, Helena; Apell, Jeanette; Sillén, Ulla; Abrahamsson, Kate

doi:10.1016/j.jpedsurg.2015.09.023

Cited by 40 publications

(68 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…In line with these findings decreased HRQoL with increasing number of surgeries was reported in children with CHD [17]. An explanation might be that more absence from social contexts such as school and friends [60], may entail a perception of reduced social inclusion. Furthermore, a significant association was found between mothers' BAI and the children's and adolescents' reported physical ability.…”

Section: Discussionsupporting

confidence: 77%

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents

et al. 2019

View full text Add to dashboard Cite

Purpose VACTERL association is a rare and complex condition of congenital malformations, often requiring repeated surgery and entailing various physical sequelae. Due to scarcity of knowledge, the study aim was to investigate self-reported health-related quality of life (HRQoL), anxiety, depression and self-concept in children and adolescents with VACTERL association and self-reported anxiety and depression in their parents. Methods Patients aged 8-17 years with VACTERL association and their parents were recruited from three of four Swedish paediatric surgical centres during 2015-2019. The well-established validated questionnaires DISABKIDS, Beck Youth Inventories, Beck Anxiety Inventory and Beck Depression Inventory were sent to the families. Data were analysed using descriptives, t tests and multivariable analysis. Results were compared with norm groups and reference samples. Results The questionnaires were returned by 40 patients, 38 mothers and 33 fathers. The mean HRQoL was M = 80.4, comparable to children with asthma (M = 80.2) and diabetes (M = 79.5). Self-reported psychological well-being was comparable to the norm group of Swedish school children, and was significantly higher than a clinical sample. Factors negatively influencing children's HRQoL and psychological well-being were identified. The parents' self-reports of anxiety and depression were comparable to non-clinical samples. Conclusions Although children and adolescents with VACTERL association reported similar HRQoL to those of European children with chronic conditions, their psychological well-being was comparable to Swedish school children in general. Nevertheless, some individuals among both children and parents were in need of extra support. This attained knowledge is valuable when counselling parents regarding the prognosis for children with VACTERL association.

show abstract

Section: Discussionsupporting

confidence: 77%

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents

et al. 2019

View full text Add to dashboard Cite

show abstract

“…The criteria for severity of EA were developed by a multidisciplinary team including paediatric surgical expertise and with regard to previous research of the severity of EA, as described in an earlier study (Dellenmark‐Blom et al . ). Stratified by child gender, five families of children with mild–moderate EA and five of children with severe EA were selected in three age groups (0–7, 8–12, 13–17 years) to be invited and participate in a focus group study.…”

Section: Methodsmentioning

confidence: 97%

“…; Dellenmark‐Blom et al . ). The project employs the approach of the well‐established European DISABKIDS project, within which quality of life – ‘health care needs, utilization and satisfaction’ – and coping questionnaires for children with chronic conditions were developed (Petersen et al .…”

Section: Introductionmentioning

confidence: 97%

Coping strategies used by children and adolescents born with esophageal atresia – a focus group study obtaining the child and parent perspective

Dellenmark‐Blom

Chaplin

Jönsson

et al. 2016

Child

View full text Add to dashboard Cite

Focus group methodology contributed to an increased understanding of disease-specific coping processes among children and adolescence with EA. Findings illustrate that they use several coping strategies, some of which they seem to adopt at early age and use in disease-related contexts of physical, social and emotional character. Such coping may influence health and HRQOL in children with EA. In view of the importance of establishing good coping strategies early in life, health care professionals should integrate coping aspects into care management. Future studies are warranted.

show abstract

“…Despite that, they have a high rate of secondary upper airway anomalies. 1 Both restrictive and obstructive pulmonary abnormalities have been described, [2][3][4][5] and 30 to 40% of the children report chronic and/or barky cough, wheezing, and recurrent respiratory infections. Asthma is common among both children and adults.…”

Section: Introductionmentioning

confidence: 99%

“…Asthma is common among both children and adults. 2,[6][7][8] Thus, patients with EA-TEF can develop a variety of respiratory symptoms in the infant period or later. It is known that a complete airway evaluation should be performed in all of these patients.…”

Section: Introductionmentioning

confidence: 99%

Tracheoscopic Findings and Their Impact on Respiratory Symptoms in Children with Esophageal Atresia

et al. 2019

View full text Add to dashboard Cite

Introduction Esophageal atresia (EA) is often accompanied by tracheobronchial malformations leading to stridor, recurrent bronchitis, and occasionally to life-threatening obstructive apnea after surgical repair. The aim of this study was to identify the presence of tracheomalacia in patients with EA and tracheoesophageal fistula (TEF) pre- and postoperatively and to find endoscopic correlates leading to clinical airway symptoms. Methods In a cohort of 362 patients with EA-TEF who underwent 595 tracheoscopies at the Children's Hospital of Cologne between January 1983 and December 2002, impaired tracheal lumen, localization of TEF, tracheal pulsations, and corresponding clinical symptoms were retrospectively analyzed. Results The incidence of tracheomalacia was higher in patients with EA and TEF (Gross B–D) compared with patients with EA alone (Gross A) and average tracheal collapse does not significantly change before and after surgical repair of the esophagus in all types. Patients with cyanosis while eating and obstructive apnea presented with an average tracheal collapse of 89%. The presence of respiratory symptoms such as cough, stridor, or bronchitis was not associated with a higher grade of tracheal collapse compared with patients without any airway symptoms (average tracheal collapse of 37% in symptomatic patients vs. 33% in nonsymptomatic patients). Conclusion Tracheomalacia tends to be present independently of surgical procedure. Tracheomalacia should be measured by tracheoscopy (in % of tracheal collapse). Patients with a tracheal collapse of >80%, a ventral pulsation, and obstructive apnea or cyanosis in combination, are at risk for life-threatening situations and further surgical treatment should be considered.

show abstract

Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients

Cited by 40 publications

References 24 publications

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents

Children and adolescents with VACTERL association: health-related quality of life and psychological well-being in children and adolescents and their parents

Coping strategies used by children and adolescents born with esophageal atresia – a focus group study obtaining the child and parent perspective

Tracheoscopic Findings and Their Impact on Respiratory Symptoms in Children with Esophageal Atresia

Contact Info

Product

Resources

About