Abstract
Abstract
Introduction
Dysphagia frequently occurs in movement disorders, leading to malnutrition and aspiration. Percutaneous endoscopic gastrostomy (PEG) provides nutrition directly into the stomach, bypassing the dysfunctional swallow. However, PEG insertion is a complex decision, both clinically and ethically. Although PEG outcomes are reported in other neurological disorders, there is limited research in atypical Parkinsonian syndromes such as Multiple Systems Atrophy (MSA), Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD). Insertion rates remain variable, reflecting a paucity of research and lack of consistent guidelines. Basic mortality and morbidity data would help inform practice. To our knowledge, this is the first international study of PEG insertion and its impact on survival and aspiration pneumonia in atypical Parkinsonian syndromes.
Method
International retrospective study of 72 patients with MSA, PSP or CBD. Survival was recorded from reported onset of dysphagia to death. Secondary outcomes included hospital admission rate for aspiration pneumonia.
Results
Median survival was 17.4 months (95% CI 14.0 to 24.9) in non-PEG patients versus 48.8 months (95% CI 44.8 to not reached) in PEG patients, hazard ratio (HR) 0.38 (95% CI 0.18 to 0.81; p = 0.013). PEG was not associated with reduced risk of aspiration pneumonia, 0.76 versus 0.68 admissions per patient-year, incidence rate ratio (IRR) 1.41 (95% CI 0.74 to 2.68; p = 0.297).
Conclusion
PEG insertion may improve survival in atypical Parkinsonian syndromes, though we found no evidence of reduced aspiration risk. Given the rarity of these conditions, international registries may help to determine the safety and efficacy of PEG use.
Comments
PEG feeding
Could it be that the survival was influenced by frailty/co-morbidities?
Selection bias
Thank you for your comment Alison. You are absolutely right to consider frailty and co-morbidities. As this was a retrospective study, there is likely to be selection bias in who was offered or deemed suitable for PEG. Immortal time bias also contributes to the apparent survival advantage we observed. Therefore, these findings should not be interpreted as evidence that PEG should be placed more frequently.
However, our data do suggest that in appropriately selected patients, PEG is not harmful and can be associated with prolonged survival. Further prospective studies are needed to better understand which patients benefit most.
Mechanisms for improving survival.
This study is really interesting and addresses an important clinical question. The finding that PEG insertion appears to improve survival but not aspiration rates raises interesting questions about the underlying mechanisms — for example, whether improved nutrition, rather than aspiration prevention, may account for the difference in outcomes. It would be interesting to hear your thoughts on where future research in this area might be most valuable.
Nutrition
Thank you for your comment and for raising an important point. Other Neurological disorders such as Amyotrophic Lateral Sclerosis have a good evidence base that show early PEG insertion is associated with weight gain/stabilisation. I think that future research would need to look at nutritional outcomes, to investigate this further.
Quality of life
I agree with the comments above, this is a really interesting study but as you mention in your conclusion due to the rarity of the conditions patient numbers are small. In future research the acceptability of PEG and subsequent quality of life would be interesting patient reported outcomes.
Quality of life
Thank you for your comment, I agree that quality of life is a key factor for decision making. Again, there is more research looking at patients with Amyotrophic Lateral Sclerosis. Those studies found a range of patient attitudes towards PEG. Some felt physically altered by its presence and disliked being dependent on others to manage feeding. Others found that PEG alleviated the distress of mealtimes.
Interesting work! Perhaps…
Interesting work! Perhaps the risk of aspiration isn't affected as PEG insertion doesn't alter the ability to manage one's own secretions, which will continue to be an issue whether or not there is the option for PEG feeding. I agree that internationalised data on the efficacy & safety of PEG use in Parkinsonism would be very useful for understanding the true effect of the intervention on morbidity, mortality, and if possible, on QoL measures.
Silent aspiration
Thank you for your comment. As you describe, silent aspiration of oral secretions remains a risk regardless of PEG insertion. Our finding is aligned with previous large studies that have shown no reduction in aspiration risk with generalised populations.