Andre Rietman
16 statements · 1 topic · summaries given as host listed separately
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What we see typically in quality of life research is that they are not that highly correlated life satisfaction and disease severity, for instance, in The parents of children with cardiac issues report sometimes an even higher quality of life than the people from the generic norms.
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Esophageal Atresia
Proxy and self ratings, typically they will correlate with each other but not really that high, so that learns us that those are in fact two perspectives from which we can look at the patient and it's life satisfaction.
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Esophageal Atresia
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Andre's statements about Esophageal Atresia 16 statements
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ERNICA Research Collaboration Webinar on Quality of Life
Statement
Life satisfaction and disease severity are not highly correlated; parents of children with cardiac issues sometimes report even higher quality of life than generic population norms.
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Quotation
What we see typically in quality of life research is that they are not that highly correlated life satisfaction and disease severity, for instance, in The parents of children with cardiac issues report sometimes an even higher quality of life than the people from the generic norms.
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Statement
The two primary uses of quality of life measurements are: comparing people with and without health issues to see disease effects, and finding effects of interventions such as therapy or surgical procedures.
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Statement
The most widely used quality of life instruments in pediatric surgery research include the PedsQL, CHQ (Child Health Questionnaire with infant-toddler and adolescent-adult versions), Kid-KINDL, KIDSCREEN, and EuroQol.
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Common quality of life instruments cover three main areas: physical functioning, mental or emotional functioning, and social functioning.
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Proxy ratings (parent reports) and self-ratings typically correlate with each other but not highly, indicating they represent two different perspectives on the patient's life satisfaction.
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Quotation
Proxy and self ratings, typically they will correlate with each other but not really that high, so that learns us that those are in fact two perspectives from which we can look at the patient and it's life satisfaction.
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Statement
The SF-36 has scales for physical function, emotional and social functioning, plus additional scales for family function and bodily pain.
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The WHO QoL-BREF includes an additional scale about environment and support in the environment, reflecting the International Classification of Function framework.
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The Haquel (Hirschsprung's disease anorectal malformation quality of life questionnaire) was developed in the Netherlands more than 20 years ago and has OK to good Cronbach's alpha for internal consistency.
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The Haquel demonstrates convergent validity through substantial but not excessive correlation with the generic SF-36, and discriminates between subgroups of patients by disease severity.
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The EA-QoL development followed proper methodology including qualitative research, cross-cultural approach, translation, and cognitive debriefing with people in 15 countries to ensure parallel cultural content.
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The SCIA (adult questionnaire for esophageal atresia) was developed because the SF-36 didn't capture many health problems and gastrointestinal/respiratory symptom indexes only captured part of the problems specific to adults with esophageal atresia.
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Quotation
We developed that questionnaire because the SF 36 didn't capture a lot of the health problems. The gastrointestinal and the respiratory symptoms indexes did capture some of the problems, but only part of it.
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Statement
The PedsQL asks children from age 5 to give their opinion about their health, younger than most instruments.
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The DISABKIDS-25 uses five smileys (neutral in middle, two sad and two happy) instead of verbal options, making it easier for people with language processing problems, non-native speakers, or intellectual disabilities.
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Summaries Andre gave as host · 4 summaries
Recaps of other experts' statements, not Andre's own clinical position.
Summaries Andre gave as host · Esophageal Atresia 4 summaries
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ERNICA Research Collaboration Webinar on Quality of Life
Host summary
Andre Rietman summarizes what Dr. Mikaela Dellemark said: Fayed argued that the PedsQL, a widely used instrument, is in fact a measurement of health status rather than quality of life, because it focuses more on cognitive appraisal of function level rather than emotional satisfaction.
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Host summary
Andre Rietman summarizes what Dr. Mikaela Dellemark said: Fayed argued that the PETQL as a really widely used instrument is in fact a measurement of health status and not in that respect, a measurement of of quality of life.
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Host summary
Andre Rietman summarizes what Dr. Mikaela Dellemark said: French researchers proposed an adaptation of the Haquel structure into two main scales (physical and psychosocial) because some questions and scales did not cluster the same way in France as in the Dutch original.
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Host summary
Andre Rietman summarizes what Dr. Mikaela Dellemark said: Large reviews found that up until age 8, children show large diversity in quality of life answers and asking the same questions tomorrow would give totally different results, which is why most questionnaires start from age 8.
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