The Quality of Life of Advanced Head and Neck Cancer Patients Having Received Percutaneous Endoscopic Gastrostomy for Nutritional Support

Abstract

Purpose: To study the experience, as it relates to quality of life (QoL) of patients living with Percutaneous Endoscopic Gastrostomy (PEG) tubes for nutrition support during treatment for head and neck cancer. OBJECTIVE: PEG tubes have become a preferred option for intermediate term nutritional support for those undergoing aggressive head and neck cancer treatment. The nutritional and medical outcome benefits of PEG tubes have become well established. The experience of receiving nutritional support via PEG tube from the patients' perspective has not been studied sufficiently. Anecdotal feedback from the outpatient population with PEG tubes has been very positive and patients have reported that PEG placement is a worthwhile treatment. Our study objective was to explore the general experience and quality of life of patients living with a PEG tube. It is proposed that a better understanding of the patient perspective contributes to the success of the intervention and overall improvement in patient care. Methods: A neutral questionnaire with closed and open-ended questions was developed, tested, and used to collect data in person, over the phone and via the internet. Quantitative data were analyzed to determine whether the patients' experiences were positive, neutral or negative. Chi square was used to test for significance. A frequency count of qualitative data was also done. Results: Of the 51 participants, 84% felt the PEG tube had a positive/neutral effect on their QoL. 90% felt that the PEG tube was “very much” or “quite a bit” worthwhile. Additionally, 96% would recommend it to another patient. Of the 12 questions reflecting domains of QoL impacted by living with a PEG tube, 11 were answered positively or neutrally by greater than 70% of participants. Comments from patients included: “it's a lifesaver”, “it's a great invention”, “the benefits outweigh the negatives”, “just do it”. Conclusion: The experience of patients in this study, who received a PEG tube during their treatment for head and neck cancer, is generally positive or neutral. This will assist with the decision-making for patients considering a PEG tube and for clinicians evaluating its impact. These results also provide support and encouragement for outpatient PEG tube placement programs.