Mortality and Institutionalization After Percutaneous Endoscopic Gastrostomy in Parkinson's Disease and Related Conditions

Abstract

BackgroundBackground: Percutaneous endoscopic gastrostomy (PEG) can facilitate feeding and medication administration in dysphagic patients with Parkinson's disease and related disorders. Information on survival, institutionalization, and complications post PEG might inform feeding decisions. Method Method: A total of 93 patients with Parkinson's disease and related disorders were identified by review of PEG registers and by searching the administrative databases in 2 large UK university hospitals (2005)(2006)(2007)(2008)(2009)(2010)(2011)(2012)(2013)(2014)(2015)(2016)(2017); 83 case notes were available for retrospective review. Care processes and outcomes were assessed. ResultsResults: The following were the diagnoses: 58 (70%) had Parkinson's disease, 10 (12%) had progressive supranuclear palsy, 5 (6%) had multiple system atrophy, 3 (4%) had dementia with Lewy bodies, and 7 (8%) had vascular parkinsonism. The median age was 78 years (interquartile range 72-82); 29 (35%) were women. Care processes included a future care plan in place prior to admission for 18 patients (22%), and PEG was placed during emergency admission in 68 patients (82%). The outcomes included median survival at 422 days; 30-day mortality rate was 6% (5 patients); and of 56 patients admitted from home, 18 (32%) were discharged to institutions (nursing or care homes). The most common complication was aspiration pneumonia for 18 (22%) of patients. Age, sex, diagnosis, admission type, comorbidities, and place of residence did not predict survival. Discharge to own home and follow-up by the home enteral feeding team were associated with longer survival. Conclusion Conclusion:We recommend markers of advanced disease should prompt advanced care planning. Discussions about PEG feeding should include information about post-PEG survival, complications, and risk of institutionalization. Further research is needed on quality-of-life post PEG and ways to reduce aspiration pneumonia. All PEG patients should have nutrition team follow-up.

Frequency and outcomes of gastrostomy insertion in a longitudinal cohort study of atypical parkinsonism

“…The median post-gastrostomy survival of around 400 days reported in a more recent retrospective study of MSA and PSP is also lower than we report here [8]. However, our data suggest that in selected patients with MSA, PSP and CBS, survival post-gastrostomy may be longer than previously suggested.…”

“…A recent study of gastrostomy insertion for parkinsonian syndromes in two UK centres over 12 years found a median survival of around 400 days in MSA (n = 5) and PSP (n = 10) compared with 571 days in PD (n = 58) [8].…”

“…In a retrospective analysis across two tertiary French centres, a total of 15 patients with MSA, 5 with PSP and 3 with CBS underwent gastrostomy over a 7‐year period, with a median survival of 186 days [7]. A recent study of gastrostomy insertion for parkinsonian syndromes in two UK centres over 12 years found a median survival of around 400 days in MSA ( n = 5) and PSP ( n = 10) compared with 571 days in PD ( n = 58) [8].…”

Palliative Care of End Stage Parkinsonism: An Overview Including the Five Pillars Framework

“…In general, PEG feeding in advanced dementia does not improve survival, quality of life, or improve care partner outcomes 33,34 . Similarly, in two large United Kingdom university hospitals, about a third of PD patients admitted from home who received PEG were still discharged to institutions, and almost a quarter experienced aspiration pneumonia 35 . One reason for these suboptimal outcomes is that aspiration is related not only to food and drink, but also to secretions and reflux, which tube feeds do not effect and in fact could worsen.…”

“…33,34 Similarly, in two large United Kingdom university hospitals, about a third of PD patients admitted from home who received PEG were still discharged to institutions, and almost a quarter experienced aspiration pneumonia. 35 One reason for these suboptimal outcomes is that aspiration is related not only to food and drink, but also to secretions and reflux, which tube feeds do not effect and in fact could worsen. In the authors' experience, PEG may be a reasonable option for very select patients with sufficient likelihood to withstand the procedure, when maintaining nutritional needs interferes with quality of life (eg, patient and spouse spending hours on meals).…”