PEG feeding in multiple sclerosis - too little, too late?
Christine Collin, Consultant in Neurological Rehabilitation Medicine;
Rachel Botell, Specialist Registrar in Neurological Rehabilitation Medicine;
Royal Berkshire and Battle Hospitals NHS Trust, Reading
Way Ahead 2005;9(1):4-5
Introduction
This article discusses dysphagia and multiple sclerosis (MS), looking at the timing of percutaneous endoscopic gastrostomy (PEG) insertion using a care pathway that has been created in our neurological rehabilitation service for motor neurone disease (MND) patients.
The frequency of dysphagia is not well known, but some studies suggest that swallowing problems occur in 34 - 43% of patients, with increased association with brainstem dysfunction and pronounced severity of illness1, 2. It is a troublesome and upsetting symptom, its severity can fluctuate but may lead to significant health issues including starvation, chest infections due to recurrent aspiration and sometimes death. Up to half of patients with swallowing difficulties may not complain of any symptoms2 and are at great risk of silent aspiration. Early detection of swallowing problems will reduce the development of complications.
Investigation and management of swallowing problems
Although videofluoroscopy is taken to be the gold standard investigation, simple clinical assessment, a careful patient history and a short swallowing test, provide a useful screening tool3. An interdisciplinary assessment by the neurological rehabilitation team will provide a comprehensive management plan which depends on the extent of the problem, whether it is likely to resolve in time because it is a temporary feature of a relapse, or is a more permanent feature due to progressive disease. The speech and language therapist and dietician make important contributions to assessment, treatment and management. Useful options include altering patient position when feeding, modifying consistency of food and fluids, providing help with feeding, temporary use of a nasogastric tube and sometimes recommending PEG insertion. There may be difficult ethical issues to consider, particularly if the person with MS has reduced mental capacity.
We have not found any significant studies on the interventions for dysphagia in MS, but there have been systematic reviews investigating dysphagia management in acute stroke and other neurological disease4, 5. These found that PEG feeding was superior to nasogastric feeding and resulted in improved survival.
Percutaneous endoscopic gastrostomy
PEG insertion for feeding was first described in 1980 by Gauderer et al6, and has been increasingly used. It is particularly well suited to those with significant co-morbidities, which would otherwise increase their risk of surgical complications. It is relatively straightforward and requires only minimal sedation. Morbidity and mortality rates are usually low, at 3 - 5.9% and 0.3 - 1% respectively7-9, but there have been reports of high 30-day morbidity and mortality, associated with malnutrition and low albumin at the time of PEG insertion or a previous history of aspiration10-14. One retrospective review documented 30-day mortality rates at 16%, associated with a 75% increase in PEG placement over a 5-year period15. These figures suggest that we should review the selection criteria of these patients very carefully to reduce the risk of complications.
Over the past two years our specialist neurological rehabilitation and gastroenterology team have developed a service for PEG provision in patients with progressive neurological disease. Our aim has been to identify patients with swallowing problems early and make plans for intervention before complications such as aspiration or malnutrition arise.
Development of a care pathway for safe timing of PEG insertion in MND - can we use it in MS patients?
We conducted a retrospective review of all MND patients who underwent PEG insertion between October 2002 and May 2003 and found a high early mortality rate that led us to look at the special characteristics of this group. We found high levels of malnutrition and poor respiratory function with forced vital capacity (FVC) more than 50% below predicted level16. This was sometimes because the patient had refused the intervention and had delayed having it for as long as possible. Surviving patients in general did not have these high-risk features. These findings led us to review our practice and we devised a care pathway to identify early those likely to require future nutritional support, recognise the early signs of swallowing impairment, and provide PEG insertion safely before development of high-risk features (Figure 1).
We chose four parameters to measure - upper limb skills, swallow, weight and respiratory function. A decline in any of these areas would suggest a problem in maintaining nutrition, from an inability to feed oneself, to swallowing difficulties, poor airways protection, and weak cough. Once a significant reduction in any of the parameters is noticed, the option of PEG insertion is discussed with the patient, including the risks and benefits of early or delayed intervention. This approach promotes patient autonomy by improving information provision to aid decision-making. This method of early PEG provision allows transitional feeding through the PEG to supplement nutrition before the patient's swallow deteriorates to an unacceptable level.
The care pathway is currently being audited and although the data collection is not yet complete, figures so far show an increase in the number of PEGs inserted before the development of high-risk features, allowing transitional feeding in more cases and there have been no procedure related deaths.
We are now starting to use this approach in other patient groups, in particular those with MS. The first three parameters of the care pathway can be directly translated to identify those who have early swallowing or feeding problems and are likely to require future PEG insertion. The fourth parameter is more specific to the respiratory weakness that develops in MND, but will sometimes be applicable in MS. One small observational study of MS patients found that over half of these had an element of respiratory impairment on spirometry and that it was more common in those with severe disease, cerebellar and cognitive impairment17. Therefore respiratory function should also be assessed in MS prior to PEG insertion, either by symptoms or objective measurement. This care pathway also reflects many of the recommendations made in the recently published MS National clinical guidelines18.
Improving quality of life in MS by avoiding nutritional impairment
It seems that many MS patients have dysphagia, but a significant number may go undiagnosed. This increases their risk of malnutrition, aspiration pneumonia and eventually death. Intervention to prevent these complications is available, but it is essential to make early plans for PEG insertion to reduce procedure-related morbidity and mortality. Monitoring disease progression using the care pathway should identify patients for PEG before they develop high-risk features and will also allow improved patient autonomy. The key is to be aware of this problem and intervene sooner rather than later; otherwise it will be too little, too late.
References
- Calcagno P, et al.
Dysphagia in multiple sclerosis - prevalence and prognostic factors.
Acta Neurol Scand 2002; 105(1): 40-43. - Thomas FJ, et al.
Dysphagia and nutritional status in multiple sclerosis.
J Neurol 1999; 246(8): 677-682. - Mari F, et al.
Predictive value of clinical indices in detecting aspiration in patients with neurological disorders.
J Neurol Neurosurg Psychiatry 1997; 63(4):456-460. - Bath PM, et al.
Interventions for dysphagia in acute stroke. (Cochrane Review)
In: The Cochrane Library, Issue 3 2002; Oxford: Update Software. - Cummins C, et al.
Percutaneous endoscopic gastrostomy (PEG): feeding in the enteral nutritional of dysphagic stroke patients.
Birmingham: University of Birmingham; 1999. - Gauderer MW, et al.
Gastrostomy without laparotomy: a percutaneous endoscopic technique.
J Pediatr Surg 1980; 15(6): 872-875. - Foutch PG, et al.
Percutaneous endoscopic gastrostomy (PEG). A new procedure comes of age.
J Clin Gastroenterol 1986; 8(1): 10-15. - Larson DE, et al.
Percutaneous endoscopic gastrostomy. Indications, success, complications, and mortality in 314 consecutive patients.
Gastroenterology 1987; 93(1): 48-52. - Ponsky JL, et al.
Percutaneous approaches to enteral alimentation.
Am J Surg 1985; 149(1): 102-105. - Beau P, et al.
[Malnutrition is an independent risk factor of early complications following percutaneous endoscopic gastrostomy].
Gastroenterol Clin Biol 2001; 25(10): 891-895. French. - Thomson MA, et al.
Percutaneous endoscopic gastrostomy feeding in a district rehabilitation service.
Clin Rehabil 2002; 16(2): 215-220. - Friedenberg F, et al.
Serum albumin is predictive of 30-day survival after percutaneous endoscopic gastrostomy.
J Parenter Enteral Nutr 1997; 21(2): 72-74. - Light VL, et al.
Predictive factors for early mortality after percutaneous endoscopic gastrostomy.
Gastrointest Endosc 1995; 42(4): 330-335. - Jarnagin WR, et al.
The efficacy and limitations of percutaneous endoscopic gastrostomy.
Arch Surg 1992; 127(3): 261-264. - Sheehan JJ, et al.
Percutaneous endoscopic gastrostomy: 5 years of clinical experience on 238 patients.
Ir Med J 2003; 96(9): 265-267. - Chio A, et al.
Safety and factors related to survival after percutaneous endoscopic gastrostomy in ALS.
Neurology 1999; 53(5): 1123-1125. - Grasso MG, et al.
Cerebellar deficit and respiratory impairment: a strong association in multiple sclerosis?
Acta Neurol Scand 2000; 101(2):98-103. - Multiple sclerosis. National clinical guideline for diagnosis and management in primary and secondary care.
London: The Royal College of Physicians; 2004.
Join the Way Ahead mailing list
(UK addresses only)
Disclaimer
Way Ahead articles are reproduced as published. They are not updated to take account of subsequent developments. Use appropriate caution in acting on the information in any article.
