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Aims: To describe the frequency, timing and outcome from gastrostomy in amyotrophic lateral sclerosis/motor neurone disease (ALS/MND).Methods: The Scottish MND Register, a population based disease register (1989- 1998), with record linkage to the Scottish Morbidity 1 dataset of hospital discharges coded for gastrostomy procedure was used. Descriptive statistics of patients undergoing gastrostomy were extracted. Survival analysis used Kaplan Meier and Cox proportional hazards methods. Results: For patients diagnosed between 1989- 98, 142 percutaneous endoscopic gastrostomy(PEG) insertion episodes were identified in 1226 patients, 130 of which occurred before the censoring date of 31 December 1999. Annually, on average, 5 % of all revalent patients underwent gastrostomy, and this rate appeared to double between 1989- 98. The cumulative incidence of gastrostomy was 11 % . Mean age at PEG tube insertion was 66.8 years, with a mean disease duration of 24 months. Median survival from PEG tube insertion was 146 days. The 1 month mortality after gastrostomy was 25 % . Gastrostomy did not confer a survival advantage compared with no gastrostomy. Conclusions: We found that gastrostomy feeding tubes are being inserted more frequently in people with ALS/MND. An unexpectedly high early mortality was detected which probably reflects a lack of selection bias compared with previously published data. It is possible that changes in the practice of gastrostomy placement since 1998 result in better outcomes for patients with ALS/MND. Prospective studies are required to assess the risks and benefits of enterai nutrition in ALS/MND.
Aims: To describe the frequency, timing and outcome from gastrostomy in amyotrophic lateral sclerosis / motor neurone disease (ALS / MND). Methods: The Scottish MND Register, a population based disease register (1989- 1998), with record linkage to the Scottish Survival analysis used for Kaplan Meier and Cox proportional hazards methods. Results: For patients diagnosed between 1989-98, 142 percutaneous endoscopic gastrostomy (PEG) insertion episodes were identified in 1226 patients, 130 of them occurred before the censoring date of 31 December 1999. Annually, on average, 5% of all revalent patients underwent gastrostomy, and this rate had to double between 1989-98. The cumulative incidence of gastrostomy was 11%. Mean age at PEG tube insertion was 66.8 years, with a mean disease duration of 24 months. Median survival from PEG tub e found was gastrostomy feeding tubes are being inserted more often people with ALS / MND. An unexpectedly high early mortality was detected which probably reflects a lack of selection bias compared with previously published data. It is possible that changes in the practice of gastrostomy placement since 1998 result in better outcomes for patients with ALS / MND. Prospective studies are required to assess the risks and benefits of enterai nutrition in ALS / MND.