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How good is quality-of-life for children receiving home parenteral nutrition? - A pilot study

Léa Chantal Tran1, Gill Lazonby2, Remy Morello3

  • 1Department of Paediatric Gastroenterology and Nutrition, The General Infirmary at Leeds, Great George Street, Leeds LS1 3EX, West Yorkshire, UK; Department of Pediatrics, CHU d'Amiens, Amiens, Picardie, France.

Clinical Nutrition ESPEN
|January 22, 2019
PubMed

Insights

Home parenteral nutrition (HPN) significantly impacts children's quality of life (QOL), particularly affecting daily living activities and social functioning. Medical care aspects did not significantly alter QOL, highlighting a need for integrated social support for these families.

Area of Science:

  • Pediatric Gastroenterology
  • Quality of Life Research
  • Home Healthcare

Background:

  • Children on home parenteral nutrition (HPN) face complex nutritional, social, and financial challenges.
  • Existing tools like the HPN-QOL questionnaire assess adult HPN patient quality of life (QOL).
  • Social and clinical support may not adequately address the needs of pediatric HPN patients and their families.

Purpose of the Study:

  • To adapt and utilize the HPN-QOL questionnaire to evaluate the influence of HPN on the QOL of pediatric patients.
  • To explore the specific domains of QOL affected by HPN in children.

Main Methods:

  • The Baxter's HPN-QOL questionnaire was modified for a pediatric HPN population.
  • Demographic data, etiology of intestinal failure, and duration of HPN were collected.
  • QOL was assessed using functional and symptom scales, HPN-specific items, and overall QOL Numerical Rating Scales.

Main Results:

  • QOL was significantly impaired in daily living activities (eating, dressing, mobility) for pediatric HPN patients.
  • QOL was not significantly affected in school attendance, fatigue, pain, or body image domains.
  • No significant QOL differences were observed between patients with and without enterostomy; patients reported good support from hospital nutrition teams.

Conclusions:

  • Medical aspects of HPN care did not significantly impact patient QOL.
  • QOL impairment in pediatric HPN is linked to activities of daily living and social functioning.
  • There is a need for better integration of medical and social care to support families of children receiving HPN.
Abstract

Keywords:
Home parenteral nutritionIntestinal failureNutrition teamQuality-of-LifeShort bowel syndrome

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