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Cited by 73Clinical Nutrition and GastroenterologyCentral Venous Catheters and HemodialysisPalliative Care and End-of-Life Issues

Percutaneous endoscopic gastrostomies: the burden of treatment from a patient perspective

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Jordan, Sue, Philpin, Sue, Warring, Joanne, Cheung, Wai Yee, Williams, John·2006·Journal of Advanced Nursing
DOI 10.1111/j.1365-2648.2006.04006.x
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Abstract

Aim. This paper reports a study of patients’ experiences of this relatively new technology, and explores possible strategies for defining, delineating and addressing patients’ concerns, problems and needs. Background. The number of patients in the community relying on percutaneous endoscopic gastrostomy for their nutritional needs is increasing, but percutaneous endoscopic gastrostomy feeding is not problem‐free. However, few studies report on its impact from a patient perspective. Methods. Twenty adults with long‐term percutaneous endoscopic gastrostomies were interviewed in their own homes, using both semi‐structured and structured approaches. Qualitative data were analysed thematically and related to a symptom checklist and an established quality of life measure, the Short Form‐12. Findings. Most participants felt that insertion of a percutaneous endoscopic gastrostomy had been life‐saving, but found that percutaneous endoscopic gastrostomy feeding came to dominate their lives and was associated with an appreciable ‘burden of treatment’. Some, but not all, of the problems recounted were unavoidable: percutaneous endoscopic gastrostomy feeding inevitably imposed physical restrictions on mobility; 17/20 participants had experienced serious technical problems with their percutaneous endoscopic gastrostomy tubes. On structured questioning, all interviewees had some, potentially treatable, gastrointestinal symptoms, and eight had continuous problems. In some cases, the burden of treatment was exaggerated by being unanticipated and, for 13 patients, difficulties with care provided by non‐specialist services. Describing this ‘burden of treatment’ for each patient required both a narrative and a structured approach: without the symptom checklists, some important and treatable problems were missed. Both physical and mental health Short Form‐12 scores were low, and mental health scores were congruent with the interview data. Conclusions. It might be possible to reduce the ‘burden of treatment’ identified by incorporating a structured approach to patient monitoring and by reviewing the occupational territories of specialist and non‐specialist practitioners. Further research with larger numbers of participants is needed to explore the integration of narrative and quantitative data when determining patients’ clinical needs.

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  • The effect of enteral nutrition on functionality, mortality, and quality of life remains unclear.

    “Nevertheless, the effect on functionality, mortality, and quality of life remains unclear (144-155).”

    From ESPEN practical guideline: Clinical nutrition and hydration in geriatrics (2022) · cites this paper as [153]

    The Background (page unavailable) says PEG feeding may not enhance quality of life and that studies in stroke survivors question its advantages for survival and morbidity. The paper also describes physical limitations, but it does not establish that effects on functionality remain unclear; its discussion concerns PEG feeding rather than enteral nutrition generally. (LLM, conf=0.83)

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  55. Ó 2006 The Authors. Journal compilation Ó 2006 Blackwell Publishing Ltd 13652648, 2006, 3, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/j.1365-2648.2006.04006.x by Mount Vernon Nazarene University, Wiley Online Library on [23/06/2026]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License · DOI

Authors
Jordan, S., Philpin, S., Warring, J., Cheung, W. Y., & Williams, J.
Affiliations
Swansea University (GB)
ORCID
Venue
Journal of Advanced Nursing
Publisher
Wiley
Published
2006-09-06
Volume
56
Issue
3
Pages
270-281
ISSN
  • 0309-2402 (ISSN-L)
  • 1365-2648
DOI
10.1111/j.1365-2648.2006.04006.x
OpenAlex
W2107083253
Cited by
73
References
67
Citations by year
2026: 3 · 2025: 3 · 2024: 2 · 2023: 3 · 2022: 4 · 2021: 1 · 2020: 3 · 2019: 6 · 2018: 3 · 2017: 3 · 2016: 6 · 2015: 11 · 2014: 3 · 2013: 3 · 2012: 3
FWCI
1.76
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Journal of Advanced Nursing (publishedVersion)
  • PubMed (publishedVersion)
Funders
Office of Research and Development
Topics
  • Health Sciences › Nursing › Nutrition and Dietetics › Clinical Nutrition and Gastroenterology
  • Health Sciences › Health Professions › Emergency Medical Services › Central Venous Catheters and Hemodialysis
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
percutaneous endoscopic gastrostomy, enteral nutrition, patient experience, treatment burden, patient perspectives, gastrointestinal symptoms, tube feeding complications, quality of life, Short Form-12, patient monitoring, non-specialist care, mobility restrictions
MeSH terms
Adult, Aged, Aged, 80 and over, Enteral Nutrition, Female, Gastrostomy, Humans, Intubation, Gastrointestinal, Male, Middle Aged, Quality of Life, Wales, Endoscopy, Gastrointestinal, Patient Satisfaction, Qualitative Research

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