Introduction Patients with NMD's suffer from feeding difficulties and respiratory failure which worsens prognosis. A survival advantage with PEG feeding has been suggested in case reports but there are concerns regarding safety and complications in this high risk group in or at risk of ventilatory failure. We have therefore reviewed the outcomes of NSPIs in our tertiary teaching hospital.
Methods 33 NSPIs were identified upto 2012. Disease background, baseline lung physiology, NIV use, peri-procedure details, complications and survival at 365 days were analysed. A subset analysis examining bulbar vs. non bulbar MND, baseline FVC and NIV use against survival at 365 days was also carried out.
Results 33 patients with NMD (MND 79%, DMD 9%, Myotonic Dystrophy 6%, others 6%) were included. Mean age was 59 (range 21–80). Mean pre-procedure FVC was 57% ( 22–95 ), SNIP was 3.9kPa (1.8–6.2kPa). Mean pre-procedure pO2 was 10kPa (7.3–12.4), pCO2 5.7kPa (4.2–7.5) and HCO3 27.6mmol/L (23.8–31). 52% were previously on NIV. Mean pre-procedure NIV settings were IPAP 18cmH20, EPAP 3cmH20. Mean post procedure settings were 19 and 3cmH20 respectively. 11% needed supplemental oxygen for a short period post procedure. Sedation was used in 95% and no medical reversals were needed. Complication rates were 9%, 3%, 10% and 9% (immediate, 6 weeks, 6 months, 1yr) respectively. Of those who were NIV naïve initially, 13% went home established on NIV. Survival at 365 days post procedure was 64%. Subset analysis of outcomes in bulbar vs. non-bulbar MND, FVC < or > 50% and NIV for procedure only vs. discharge with NIV has not shown any statistically significant differences, although absolute numbers are small.
Conclusions High risk NMD patients can have PEGs inserted safely. Our complications and one year survival rates are better compared with current published evidence in lower risk groups. We believe this is due to intensive support and monitoring during the procedure and use of NIV. Although survival is largely related to disease progression, further analysis is required with larger numbers to fully assess the impact of PEG feeding on it.