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.