The impact of gastrostomy in motor neurone disease: Challenges and benefits from a patient and carer perspective

BMJ Supportive and Palliative Care

Volumn 6, Issue 1, 2016, Pages 52-59

  Stavroulakis, Theocharis ^a   Baird, Wendy O ^b   Baxter, Susan K ^b   Walsh, Theresa ^a   Shaw, Pamela J ^a   McDermott, Christopher J ^a  

^a UNIVERSITY OF SHEFFIELD   (United Kingdom)

^b UNIVERSITY OF SHEFFIELD   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ATTITUDE TO HEALTH; CAREGIVER; COMPLICATION; DEGLUTITION DISORDERS; EVALUATION STUDY; FEMALE; GASTROSTOMY; HUMAN; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; PSYCHOLOGY; RETROSPECTIVE STUDY; TREATMENT OUTCOME; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; CAREGIVERS; DEGLUTITION DISORDERS; EVALUATION STUDIES AS TOPIC; FEMALE; GASTROSTOMY; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; RETROSPECTIVE STUDIES; TREATMENT OUTCOME;

EID: 84958794058     PISSN: 2045435X     EISSN: 20454368     Source Type: Journal    
DOI: 10.1136/bmjspcare-2013-000609     Document Type: Article

References (29)

1. McDermott CJ, Shaw PJ. Diagnosis and management of motor neurone disease. BMJ 2008;336:658-62.
2. Kirker FJ, Oliver DJ. The development and implementation of a standardized policy for the management of dysphagia in motor neurone disease. Palliat Med 2003;17:322-6.
3. Hughes T. Neurology of swallowing and oral feeding disorders: assessment and management. J Neurol Neurosurg Psychiatry 2003;74(Suppl 3):iii48-52.
4. Skelton J. Nursing role in the multidisciplinary management of motor neurone disease. Br J Nurs 2005;14:20-4.
5. Squires N. Dysphagia management for progressive neurological conditions. Nurs Stand 2006;20:53-7.
6. Ekberg O, Hamdy S, Woisard V, et al. Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia 2002;17:139-46.
7. Andersen PM, Borasio GD, Dengler R, et al. EFNS task force on management of amyotrophic lateral sclerosis: guidelines for diagnosing and clinical care of patients and relatives. Eur J Neurol 2005;12:921-38.
8. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 2009;73:1218-26.
9. Gordon PH, Mitsumoto H. Chapter 20. Symptomatic therapy and palliative aspects of clinical care. In: Eisen AA, Shaw PJ, eds. Handbook of Clinical Neurology. Elsevier B.V., 2007:389-424.
10. Katzberg HD, Benatar M. Enteral tube feeding for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev 2011;(1):CD004030.
11. Mitsumoto H, Davidson M, Moore D, et al. Percutaneous endoscopic gastrostomy (PEG) in patients with ALS and bulbar dysfunction. Amyotroph Lateral Scler Other Motor Neuron Disord 2003;4:177-85.
12. Radunovic A, Mitsumoto H, Leigh PN. Clinical care of patients with amyotrophic lateral sclerosis. Lancet Neurol 2007;6:913-25.
13. Brooks BR, Miller RG, Swash M, et al. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000;1:293-9.
14. Bowling A. Research methods in health: investigating health and health services. Buckingham & Philadelphia: Open University Press, 2002.
15. Mason J. Qualitative Researching. London: SAGE, 2002.
16. Boyatzis RE. Transforming qualitative information: thematic analysis and code development. Thousand Oaks, London & New Delhi: SAGE, 1998.
17. Guest G, MacQueen KM, Namey EE. Applied Thematic Analysis. Thousand Oaks: SAGE, 2011.
18. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77-101.
19. Guest G, Bunce A, Johnson L. How Many Interviews Are Enough?: An Experiment with Data Saturation and Variability. Field Methods 2006;18:59-82.
20. Stavroulakis T, Baird WO, Baxter SK, et al. Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support Palliat Care 2014;4:57-63.
21. Greenwood DI. Nutrition management of amyotrophic lateral sclerosis. Nutr Clin Pract 2013;28:392-9.
22. Barr JT, Schumacher GE. The need for a nutrition-related quality-of-life measure. J Am Diet Assoc 2003;103:177-80.
23. Brotherton A, Abbott J, Aggett P. The impact of percutaneous endoscopic gastrostomy feeding upon daily life in adults. J Hum Nutr Diet 2006;19:355-67.
24. Winkler MF. American Society of Parenteral and Enteral Nutrition Presidential Address: food for thought: it's more than nutrition. JPEN J Parenter Enteral Nutr 2007; 31:334-40.
25. Stavroulakis T, Walsh T, Shaw PJ, et al. Gastrostomy use in motor neurone disease (MND): a review, meta-analysis and survey of current practice. Amyotroph Lateral Scler Frontotemporal Degener 2013;14:96-104.
26. PEG and alternative feeding-making the decision. Secondary PEG and alternative feeding-making the decision September 2012. http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/Information%20Sheet%2011%20-%20PEG%20and%20alternative%20feeding%20-%20making%20the%20decision.pdf
27. Eating, swallowing and breathing. Secondary Eating, swallowing and breathing May 2012 2008. http://healthtalkonline.org/peoples-experiences/nerves-brain/motor-neurone-disease-mnd/eating-swallowing-and-breathing
28. PEGs, RIGs and ventilation. Secondary PEGs, RIGs and ventilation May 2012 2008. http://healthtalkonline.org/peoples-experiences/nerves-brain/motor-neurone-disease-mnd/pegs-rigs-and-ventilation
29. Anonymous. MND Care Pathway and Clinical Guideline Examples. Secondary MND Care Pathway and Clinical Guideline Examples 2014. http://www.mndassociation.org/for-professionals/sharing-good-practice/care-pathway-andclinical-guideline-examples