Quality of life in relation to eating in children and adults born with esophageal atresia - ERNICA Research Collaboration
▶Ep 34 · 36:40
clinicalGeneric quality of life instruments like SF-36 did not detect health-related quality of life issues in adults with EA.↗
▶Ep 34 · 38:20
epidemiologicalMore than 200 adults and family members attended focus group evening sessions at the hospital to discuss EA-related issues.↗
▶Ep 34 · 39:10
clinicalInitial qualitative study with adults identified 144 items related to quality of life in EA.↗
▶Ep 34 · 40:00
clinicalPilot study with 42 adults refined the item list by identifying strong and poor items based on response distribution.↗
▶Ep 34 · 40:50
quoteGoing to a restaurant is really different, different for me than for others. I have to be careful with my, my choices.↗
▶Ep 34 · 41:20
quoteWith my first girlfriend, I pretended to have already eaten at home. I didn't want to offend her parents by not being able to eat their food.↗
▶Ep 34 · 42:00
quoteOne time there wasn't enough time to eat. So after that I started vomiting, and since then they give me the time I need.↗
▶Ep 34 · 44:10
clinicalThe SCIA (condition-specific instrument for adults with EA) contains 33 items across 11 domains with good feasibility, reliability, and validity.↗
▶Ep 34 · 45:20
clinicalThe SCIA covers the ICF framework including body functions, activity, participation, and environmental/personal factors.↗
▶Ep 34 · 46:10
clinicalSCIA translation and cultural validation is underway with 8 European countries to assess cultural bias and enable wider application.↗
▶Ep 34 · 47:30
clinicalThe SCIA eating and drinking domain contains 7 questions addressing practical eating issues in adults with EA.↗