Indicators of need and timing of percutaneous endoscopic gastrostomy (PEG) in people with Huntington's disease: A medical chart review study

Background In the International guidelines for nutrition in Huntington's disease (HD) PEG-tubes may be considered in persons with HD (pwHD) with severe swallowing difficulties, but there are no general recommendations for when to initiate PEG-tube placement. Little is known about factors that have led to PEG-tube placements in pwHD. Objective To study the indications and timing of the PEG-tube placement in pwHD through medical chart review. Further aims were to investigate symptoms related to dysphagia, and documentation on informed consent to placement of the PEG-tube. Methods Retrospective medical chart review on adult form of HD at two centers for HD in Sweden, from five years prior to the PEG-tube placement up to the closure of the data collection (minimum of 6 months post PEG). Results Dysphagia-related chart notes were extracted from the medical charts of 14 pwHD. Indications for the PEG-tube placement were severe dysphagia (n = 11), weight loss (n = 10), preventive action initiated by the healthcare team (n = 5), own request by pwHD (n = 3) and recurrent aspiration pneumonia (n = 1). BMI was fluctuating both prior to and post PEG. Information about PEG-tube was documented 3 months to 4¼ years before PEG and documentation on informed consent was registered on 11 pwHD. Conclusion Frequency of dysphagia-related symptoms did not increase closer to PEG-tube placement and weight trends were inconclusive. Neither could be considered sufficient as an indicator of timing of PEG-tube placement. A request by the pwHD in combination with weight loss and/or severe dysphagia appeared to be a strong indicator for PEG-tube placement.