Patients experience with long-term percutaneous endoscopic gastrostomy feeding following primary surgery for oral and oropharyngeal cancer.

Percutaneous endoscopic gastrostomy feeding (PEG) has an important role in providing nutritional support in selected patients undergoing treatment for oral and oropharyngeal cancer. Although morbidity data have been published there is very little from the patient perspective. The aim of this project was to devise, pilot and survey a PEG specific questionnaire and relate outcomes to health-related quality of life. A cross-sectional survey was conducted in April 2005 of patients who were alive and disease free and treated by primary surgery for oral and oropharyngeal squamous cell carcinoma between 1992 and June 2004. The survey comprised the University of Washington Quality of Life questionnaire and a 24 item PEG questionnaire. Of 344 alive and disease free patients, 243 (71%) responded. Clinical characteristics of responders and non responders were similar. Mean age of responders was 65 (SD 12) and 59% were male. There were 193 (79%) patients who never had a PEG as part of their treatment, 30 (12%) who had their PEG removed (median 7 months), and 20 (8%) who still had a PEG (median 34 months). Patients with PEGs reported significant deficits in all UW-QOL domains compared to non-PEG or PEG-removed patients and also reported a much poorer quality of life. The major PEG related problems were not those of discomfort, leakage or blockage, but interference with family life, intimate relationships, social activities, and hobbies. More can be done to counsel and support patients with long-term PEG placement.