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Master Thesis

Qualité de vie des enfants en nutrition parentérale à domicile : développement d'un outil d'évaluation pédiatrique

Abstract : Introduction- The number of children with intestinal failure has increased in recent years. Home parenteral nutrition (HPN) is the reference treatment. The management of HPN children therefore involves significant changes for children and their family, which may affect their quality of life (QOL). At this time, there are no validated pediatric instruments available to assess the QOL of HPN children and their families. The objective of this study is to select relevant questions to be included in an assessment tool for HPN children and their families. Methods-. We used a literature review and then Delphi method to select relevant items. For the Delphi study, the experts were healthcare professionals and families from expert centers in France. A threshold of 80% defined consensus. Experts could propose additional items during the first round. Results- After a literature review, we identified and submitted to the experts 81 potential elements from 12 domains related to QOL of HPN children and their family. Thirty-six experts from 7 centers participated to the first round of Delphi method, and 23 to the second. Forty-seven items were validated in the first round, 14 were added between the first and second rounds. Finally, 82 items were selected for the questionnaire. Discussion- This national study identified relevant items to assess the QOL of HPN children and their families. A provisional questionnaire has been developed and will need to be tested and validated in a future study.
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https://dumas.ccsd.cnrs.fr/dumas-02438554
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  • HAL Id : dumas-02438554, version 1

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Anaïs Maffre. Qualité de vie des enfants en nutrition parentérale à domicile : développement d'un outil d'évaluation pédiatrique. Sciences du Vivant [q-bio]. 2019. ⟨dumas-02438554⟩

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