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

Citation

Labra, J and Hogden, A and Power, E and James, N and Flood, VM, Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients' decision making, BMJ Open pp. 1-10. ISSN 2044-6055 (2020) [Refereed Article]


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© 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/

DOI: doi:10.1136/bmjopen-2019-034751

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 Details

Item Type:Refereed Article
Keywords:decision-making, PEG, amyotrophic lateral sclerosis, neurodegenerative conditions
Research Division:Medical and Health Sciences
Research Group:Neurosciences
Research Field:Neurology and Neuromuscular Diseases
Objective Division:Health
Objective Group:Health and Support Services
Objective Field:Health and Support Services not elsewhere classified
UTAS Author:Hogden, A (Dr Anne Hogden)
ID Code:137738
Year Published:2020
Deposited By:Australian Institute of Health Service Management
Deposited On:2020-03-02
Last Modified:2020-04-08
Downloads:0

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