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Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making

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Labra, J, Hogden, A ORCID: 0000-0002-4317-7960, Power, E, James, N and Flood, VM 2020 , 'Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making' , BMJ Open , pp. 1-10 , doi: 10.1136/bmjopen-2019-034751.

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Abstract

Objectives: Gastrostomy decision making is a complicated, multifaceted process for people with motor neuron disease (MND). This study explored demographic and disease-related factors that may impact on gastrostomy uptake; and reasons why people with MND accepted or declined gastrostomy, with a focus on how perceptions of swallowing and nutrition may influence decision making.Design: Prospective, cross sectional, mixed methods.Setting: An Australian multidisciplinary, specialty MND Service.Participants: 33 patients were recommended gastrostomy by the treating medical specialist. 16 of 33 were invited to participate in the prospective decision making study; of whom 10 provided informed consent.Primary and secondary outcome measures: Demographic and disease-related factors contributing to uptake are described. A stepped approach was applied to gain a comprehensive understanding of why people with MND accept or decline gastrostomy. Instruments included standardised assessments, nutrition survey and semistructured interview. Data were collected at three separate appointments, spanning a 3-week period.Results: Gastrostomy uptake was 73% following medical specialist recommendation. Participants took days, weeks or months to consider their preferences, with lengthy hospital waiting times for the procedure. Gender, site of onset and rate of disease progression were observed to contribute to uptake. Age and symptom duration did not. Integration of quantitative and qualitative data suggests that patient perceptions of swallowing and nutrition contribute to gastrostomy acceptance; however, the decision making process is heterogeneous and these factors may not be the sole or primary reasons for acceptance. Other reported factors included: reducing carer burden, improving quality of life, increasing independence, continuing participation in social outings and gaining control.Conclusions: Future research may give greater insight into how healthcare organisations can better facilitate gastrostomy decision making, to meet the needs of people living with MND. Larger, prospective, multisite studies may build on these findings to better inform clinical guidelines and minimise the impacts of delayed gastrostomy insertion.

Item Type: Article
Authors/Creators:Labra, J and Hogden, A and Power, E and James, N and Flood, VM
Keywords: decision-making, PEG, amyotrophic lateral sclerosis, neurodegenerative conditions
Journal or Publication Title: BMJ Open
Publisher: B M J Group
ISSN: 2044-6055
DOI / ID Number: 10.1136/bmjopen-2019-034751
Copyright Information:

© Author(s) (or their employer(s)) 2020. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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