From
EUPSA/ERNICA
Quality of life in relation to eating in children and adults born with esophageal atresia - ERNICA Research Collaboration
With Dr. Andre Riedmann & Dr. Mikaela Delbeck Blom · hosted by Dr. Jens Stingermann
Part of
Esophageal Atresia 55 items
Chapter 1 of 6 · Patient & Family Education
Webinar introduction
Welcome and Introduction to Quality of Life Webinar Series
Expert statements on this page
No expert statements were drawn from this page.
Host summaries · secondary, not cited in answers
Educational content from recorded physician discussions — not medical advice. Talk to your (or your child's) care team about your situation.
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What the experts said
Quality of life in EA patients is not stable but develops and fluctuates across the lifespan, with eating difficulties varying by developmental stage and daily routine changes (kindergarten, school transitions).
Sham feeding in infancy facilitated post-gastric-pull-up swallowing function, eliminating problems understanding how to swallow after surgical reconstruction.
Neurologist recommendation to maintain milk-only diet rather than forcing solid foods during episodes of cyanosis with swallowing in first 12 months was clinically beneficial.
Peer modeling (siblings or other children) is important for children with EA to learn eating behaviors.
Pulmonology expertise is critical for EA patients because eating without adequate breathing is a significant issue.
Patient-driven trial-and-error learning (e.g., determining what foods to eat between football match halves to avoid dumping) is more effective than nutritionist recommendations that did not work in practice.
Sport is more effective than formal therapy for EA patients because patients prefer sport activities.
Adult EA patients lack access to expert medical centers; pediatric pulmonologists currently provide care for adult EA patients with pneumonia due to absence of adult specialist support.
Focus groups with EA patients and parents identified eight main domains of eating-related quality of life: school cafeteria experiences, children's parties, food limitation, food restriction, vomiting, fluid intake, nutritional intake, gastrostomy, and choking.
EA-QOL questionnaires include age-specific eating domains: 7 items for children aged 2-7 years and 8 items for children aged 8-18 years, answered on 5-point Likert scale with 4-week recall period.
EA-QOL eating items have been linguistically validated in 16 languages, supporting content and concept transferability across country settings.
Number of different digestive symptoms present in a child explains 43-58% of variation in eating quality-of-life scores in regression analysis.
Number of different respiratory symptoms explains only 7-8% of variation in eating quality-of-life scores, not reaching statistical significance in children aged 2-7 years.
In children aged 2-7 years, gastrostomy insertion independently predicts worse health-related quality of life in relation to eating.
In children aged 8-17 years, no primary anastomosis (child report) and prematurity combined with esophageal dilatation (parent report) independently predict worse eating-related quality of life.
Swedish nationwide study found no significant difference in eating-related quality of life between children with and without delayed EA reconstruction, though sample was small and heterogeneous.
Children with delayed EA reconstruction required nutritional intake support in school in 60% of cases, significantly higher than children with primary anastomosis.
Focus groups with 30 families identified 9 situational contexts where children with EA use coping strategies, most frequently in nutritional intake situations.
77% of children with EA use coping strategies in nutritional intake situations, employing a mean of 6 different strategies indicating large coping repertoire.
Generic health-related quality-of-life instruments (SF-36) failed to identify quality-of-life issues in adults with EA.
More specific gastrointestinal and respiratory questionnaires identified some quality-of-life issues in adults with EA but did not cover the full clinical picture.
Acceptance of nutritional intake problems increases with child age, while need for seeking social support in eating situations decreases correspondingly.
Active coping strategy of attempting to imitate peers in eating situations is most consistently associated with better health-related quality of life in relation to eating.
Focus group event for adult EA patients and families attracted over 200 attendees to hospital.
Initial qualitative study with adult EA focus groups identified 144 quality-of-life items.
Disengagement coping strategies (avoidance of nutritional intake situations, expressing fear or worry, distancing from eating or food) form a correlation cluster and associate with worse eating-related quality of life, most often independent of disease severity.
Pilot study with 42 adults refined SCIA instrument to 36 items by identifying items with appropriate distribution (not extreme responses, not too rare).
Monitoring and treating digestive morbidity may positively affect eating-related quality of life outcomes in EA patients.
Encouraging children to take active approach to eating problems rather than using disengagement coping may improve eating-related quality of life.
Validation study with 447 adults from 4 Dutch hospitals resulted in final SCIA instrument with 33 items.
SCIA instrument demonstrates good feasibility, reliability, and validity for measuring health-related quality of life in adults with EA.
SCIA covers ICF framework domains: body functions, activity, participation, and environmental and personal factors, resulting in 11 domains for EA.
SCIA translation and cultural validation is planned across 8 European countries to assess whether items are culturally biased.
SCIA eating and drinking domain contains 7 questions answered on Likert scale.
Quality-of-life questionnaires should display items with normative values to help clinicians identify when patient differs from general population or other EA patients, facilitating targeted clinical conversations.
Avoidance coping is defined as avoiding food or food situations that cause problems.
Distancing coping is defined as hiding or throwing away food.
Self-assurance for EA patients to repeatedly attempt foods that previously caused bolus obstruction is crucial for learning, but requires safe clinical environment first.
Medical staff's first task is making eating safe for EA patients; once safe, repeated trial-and-error should be encouraged as part of learning process.
In children with chronic conditions generally, avoidance and distancing coping strategies typically relate to poor outcomes, while active coping and problem-solving relate to better health-related quality of life.