Table 1

Study descriptive framework with final list of attributes and attribute levels

AttributesAttribute levelsIcon description
Planned major operations related to the conditionNo planned major operations Embedded Image
One planned major operation Embedded Image
Two planned major operations Embedded Image Embedded Image
Six planned major operations Embedded Image
Planned minor operations related to the conditionNo planned minor operations Embedded Image
One planned minor operation Embedded Image
Two planned minor operations Embedded Image Embedded Image
Six planned minor operations Embedded Image
Emergency major operations related to the conditionNo emergency major operations Embedded Image
One emergency major operation Embedded Image
Two emergency major operations Embedded Image Embedded Image
Six emergency major operations Embedded Image
Emergency minor operations related to the conditionNo emergency minor operations Embedded Image
One emergency minor operation Embedded Image
Two emergency minor operations Embedded Image Embedded Image
Six emergency minor operations Embedded Image
Infections treated in hospitalNo infections treated in hospital Embedded Image
One infection treated in hospital Embedded Image
Two infections treated in hospital Embedded Image Embedded Image
Six infections treated in hospital Embedded Image
Child’s quality of lifeGood quality of life Embedded Image
Fair quality of life Embedded Image
Poor quality of life Embedded Image
How long the child survived after their diagnosisMore than 20 years, without any expectation that their surgical condition would shorten their life expectancy Embedded Image
20 years Embedded Image
5 years Embedded Image
1 year Embedded Image
6 months Embedded Image
1 month Embedded Image