Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making
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...
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BMJ Publishing Group
2020-02-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/2/e034751.full |
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| author | Natalie James Emma Power Anne Hogden Julie Labra Victoria M Flood |
| author_facet | Natalie James Emma Power Anne Hogden Julie Labra Victoria M Flood |
| author_sort | Natalie James |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-5f32bf717c854e1d98f4d11606b031ca |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-02-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-5f32bf717c854e1d98f4d11606b031ca2025-02-11T23:45:10ZengBMJ Publishing GroupBMJ Open2044-60552020-02-0110210.1136/bmjopen-2019-034751Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision makingNatalie James0Emma Power1Anne Hogden2Julie Labra3Victoria M Flood41 MRC Centre for Neuromuscular Diseases, National Hospital for Neurology and Neurosurgery, London, UKSpeech Pathology, University of Technology Sydney, Sydney, New South Wales, AustraliaAustralian Institute of Health Service Management, University of Tasmania, Sydney, New South Wales, AustraliaMotor Neurone Disease Service, St Joseph`s Hospital, Auburn, New South Wales, AustraliaSydney School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, New South Wales, AustraliaObjectives 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.https://bmjopen.bmj.com/content/10/2/e034751.full |
| spellingShingle | Natalie James Emma Power Anne Hogden Julie Labra Victoria M Flood Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making BMJ Open |
| title | Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making |
| title_full | Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making |
| title_fullStr | Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making |
| title_full_unstemmed | Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making |
| title_short | Gastrostomy uptake in motor neurone disease: a mixed-methods study of patients’ decision making |
| title_sort | gastrostomy uptake in motor neurone disease a mixed methods study of patients decision making |
| url | https://bmjopen.bmj.com/content/10/2/e034751.full |
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