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

Author:

Kobylecki Christopher12ORCID,Chelban Viorica34ORCID,Goh Yee Yen3,Michou Emilia56ORCID,Fumi Riona7,Theilmann Jensen Marte7,Mohammad Rahema3,Costantini Alyssa7,Vijiaratnam Nirosen7,Pavey Samantha8,Pavese Nicola9ORCID,Leigh P. Nigel10,Rowe James B.11,Hu Michele T.12,Church Alistair13,Morris Huw R.7,Houlden Henry3

Affiliation:

1. Division of Neuroscience, Manchester Academic Health Science Centre University of Manchester Manchester UK

2. Department of Neurology, Manchester Centre for Clinical Neurosciences Northern Care Alliance NHS Foundation Trust Salford UK

3. Department of Neuromuscular Diseases, Queen Square Institute of Neurology University College London London UK

4. Neurobiology and Medical Genetics Laboratory “Nicolae Testemitanu” State University of Medicine and Pharmacy Chisinau Republic of Moldova

5. Division of Diabetes, Endocrinology and Gastroenterology University of Manchester Manchester UK

6. Department of Speech and Language Therapy, School of Health Rehabilitation Sciences University of Patras Patras Greece

7. Department of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology University College London London UK

8. Multiple System Atrophy Trust London UK

9. Clinical Ageing Research Unit Newcastle University Newcastle UK

10. Department of Neuroscience Brighton and Sussex Medical School Brighton UK

11. Department of Clinical Neurosciences, Cambridge Centre for Parkinson‐Plus, Cambridge University Hospitals NHS Trust University of Cambridge Cambridge UK

12. Division of Neurology, Nuffield Department of Clinical Neurosciences University of Oxford Oxford UK

13. Department of Neurology Royal Gwent Hospital Newport UK

Abstract

AbstractBackgroundMultiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) show a high prevalence and rapid progression of dysphagia, which is associated with reduced survival. Despite this, the evidence base for gastrostomy is poor, and the optimal frequency and outcomes of this intervention are not known. We aimed to characterise the prevalence and outcomes of gastrostomy in patients with these three atypical parkinsonian disorders.MethodWe analysed data from the natural history and longitudinal cohorts of the PROSPECT‐M‐UK study with up to 60 months of follow‐up from baseline. Survival post‐gastrostomy was analysed using Kaplan–Meier survival curves.ResultsIn a total of 339 patients (mean age at symptom onset 63.3 years, mean symptom duration at baseline 4.6 years), dysphagia was present in >50% across all disease groups at baseline and showed rapid progression during follow‐up. Gastrostomy was recorded as recommended in 44 (13%) and performed in 21 (6.2%; MSA 7, PSP 11, CBS 3) of the total study population. Median survival post‐gastrostomy was 24 months compared with 12 months where gastrostomy was recommended but not done (p = 0.008). However, this was not significant when correcting for age and duration of symptoms at the time of procedure or recommendation.ConclusionsGastrostomy was performed relatively infrequently in this cohort despite the high prevalence of dysphagia. Survival post‐gastrostomy was longer than previously reported, but further data on other outcomes and clinician and patient perspectives would help to guide use of this intervention in MSA, PSP and CBS.

Funder

Multiple System Atrophy Trust

PSP Association

Publisher

Wiley

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