ArticleBMJ open2020
Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients' decision making.
Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
12 citing papers in PubMed, 3 syntheses or guidelines pooled it, 20 citations in OpenAlex.
- A Systematic Review of Attributes Influencing Preferences for Treatments and Interventions in People With Amyotrophic Lateral Sclerosis (ALS).Muscle & nerve · 2025Pooled it
- Pooled it
- Advance directives in amyotrophic lateral sclerosis - a systematic review and meta-analysis.BMC palliative care · 2024Pooled it
- Foregrounding Communication Access in Person-Centred Decision Making for People with Motor Neurone Disease: A Narrative Review.Healthcare (Basel, Switzerland) · 2026Review
- Motivation and challenges in decision making for gastrostomy tube placement and use: a focus on patients with cancer and dysphagia.BMC medical informatics and decision making · 2026Article
- Decision-making of artificial nutrition and hydration in hospice care: A qualitative study of Chinese patients and family caregivers.Asia-Pacific journal of oncology nursing · 2025Article
- Co-Design and Non-Randomised Pilot Evaluation of Resources Developed to Optimise Saliva Management in People with Motor Neurone Disease.Healthcare (Basel, Switzerland) · 2025Article
- The Leeds Motor Neuron Disease Percutaneous Endoscopic Gastrostomy Pathway: Improving Clinical Outcomes and Experience in a UK Center.Neurology. Clinical practice · 2025Article
- Factors Influencing Decision Making for Gastrostomy Tube Placement for People Living with Serious Illness: A Scoping Review.Journal of palliative medicine · 2025Article
- Factors influencing decisions people with motor neuron disease make about gastrostomy placement and ventilation: A qualitative evidence synthesis.Health expectations : an international journal of public participation in health care and health policy · 2023Review
- Article
- Using the Concept of Health Literacy to Understand How People Living with Motor Neurone Disease and Carers Engage in Healthcare: A Longitudinal Qualitative Study.Healthcare (Basel, Switzerland) · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 5 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesGastrostomy 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.
designProspective, cross sectional, mixed methods.
settingAn Australian multidisciplinary, specialty MND Service.
participants33 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.
resultsGastrostomy 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.
conclusionsFuture 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.