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Nutrition with Gastrostomy Feeding Tubes for Amyotrophic Lateral Sclerosis in Canada

  • Timothy Benstead (a1), Caitlin Jackson-Tarlton (a2) and Desmond Leddin (a3)

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is a rapidly progressing degenerative motor neuron disease that results in significant muscle weakness. Defects in energy metabolism and difficulties in swallowing eventually lead to a reduction in body mass. Weight loss exacerbates symptoms and serves as an independent negative prognostic factor. Percutaneous endoscopic gastrostomy (PEG) is often inserted in patients with ALS to either supplement or replace oral feeding. However, the criteria for PEG placement and timing of insertion are important clinical decisions that have not been fully studied. Given the absence of guiding evidence, the aim of this project was to better understand how Canadian ALS clinics make decisions regarding gastrostomy feeding. Methods: ALS clinical directors across Canada were asked if they had written guidelines for timing of PEG insertion and if not, what criteria they use to make this decision. Responses from 10 of 17 centres contacted were received. Results: The approach to supplemental nutrition management in Canadian clinics varies in the absence of formal guidelines. Only one centre has a written set of centre-specific protocols in place. Most clinics considered some combination of respiratory decline, weight loss, dysphagia and/or patient readiness when reaching a decision. However, the absolute threshold and mechanism of measuring the individual criteria differed between clinics. Conclusions: Practices generally reflect international published recommendations but vary on the emphasis of specific criteria. Further research is required to determine the optimal timing and criteria to place gastrostomy feeding tubes in the ALS population.

Alimentation par sonde de gastrostomie chez les patients atteints de sclérose latérale amyotrophique au Canada. Contexte : La sclérose latérale amyotrophique (SLA) est une maladie dégénérative progressive du neurone moteur qui entraîne une faiblesse musculaire importante. Les anomalies du métabolisme énergétique et les difficultés à avaler causent éventuellement une diminution de la masse corporelle. La perte de poids exacerbe les symptômes et constitue un facteur pronostique négatif indépendant. On a souvent recours à la gastrostomie percutanée endoscopique (GPE) chez les patients atteints de SLA, soit pour fournir un supplément alimentaire ou pour remplacer l’alimentation par voie orale. Cependant, les critères utilisés pour avoir recours à la GPE et le moment d’y avoir recours sont des décisions cliniques importantes qui n’ont pas encore été étudiés à fond. Étant donné l’absence de données pouvant orienter la décision, le but de ce projet était de mieux comprendre comment la décision d’avoir recours à la GPE est prise dans les cliniques canadiennes de SLA. Méthodologie : Nous avons demandé aux directeurs de cliniques de SLA à travers le Canada s’ils avaient des directives écrites pour déterminer le moment d’avoir recours à la GPE et si ce n’est pas le cas, quels critères ils utilisaient pour prendre cette décision. Nous avons reçu des réponses de 10 des 17 centres que nous avions contactés. Résultats : L’approche à la gestion de la supplémentation nutritionnelle dans les cliniques canadiennes demeure variable en raison de l’absence de lignes directrices formelles. Un seul centre avait mis en place ses propres protocoles écrits à ce sujet. La plupart des cliniques considéraient différentes combinaisons de facteurs, soit le déclin respiratoire, la perte de poids, la dysphagie et/ou si le patient est prêt à subir cette intervention au moment où la décision est prise. Cependant, le seuil absolu et le mécanisme de mesure des critères individuels étaient différents d’une clinique à l’autre. Conclusions : Les pratiques des différentes cliniques reflètent en général les recommandations internationales publiées, mais elles varient concernant l’emphase mise sur des critères spécifiques. Il faudra procéder à des études supplémentaires pour déterminer le moment optimal et les critères à utiliser pour la mise en place de sondes d’alimentation par gastrostomie chez les patients atteints de SLA.

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Copyright

Corresponding author

Correspondence to: Timothy Benstead, Room 3828, Halifax Infirmary, 1796 Summer Street, Queen Elizabeth II Health Sciences Centre, Halifax, Nova Scotia B3H 3A7. E-mail: tbenstea@dal.ca.

References

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Keywords

Nutrition with Gastrostomy Feeding Tubes for Amyotrophic Lateral Sclerosis in Canada

  • Timothy Benstead (a1), Caitlin Jackson-Tarlton (a2) and Desmond Leddin (a3)

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