Decision Making about Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis

Qualitative Health Research

Volumn 26, Issue 10, 2016, Pages 1366-1381

  Martin, Naomi H ^a   Lawrence, Vanessa ^a   Murray, Joanna ^a   Janssen, Anna ^b   Higginson, Irene ^a   Lyall, Rebecca ^c   Burman, Rachel ^a   Leigh, P Nigel ^d   Al Chalabi, Ammar ^a   Goldstein, Laura H ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

^b ST THOMAS HOSPITAL   (United Kingdom)

^c KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST   (United Kingdom)

^d UNIVERSITY OF SUSSEX   (United Kingdom)

Author keywords

decision making; health care professionals; health care, users' experiences; illness and disease, life threatening terminal; neurology; palliative care; qualitative analysis; South East England; thematic analysis

Indexed keywords

AMYOTROPHIC LATERAL SCLEROSIS; DECISION MAKING; GASTROSTOMY; HUMAN; NONINVASIVE VENTILATION; QUALITY OF LIFE;

AMYOTROPHIC LATERAL SCLEROSIS; DECISION MAKING; GASTROSTOMY; HUMANS; NONINVASIVE VENTILATION; QUALITY OF LIFE;

EID: 84977151196     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732315583661     Document Type: Article

References (29)

1. Albert S. M., Murphy P. L., Del Bene M. L., Rowland L. P., (1999). A prospective study of preferences and actual treatment choices in ALS. Neurology, 53, 278-283.
2. Albert S. M., Murphy P. L., Del Bene M. L., Rowland L. P., Mitsumoto H., (2001). Incidence and predictors of PEG placement in ALS/MND. Journal of Neurological Sciences, 191, 115-119.
3. Bourke S. C., Williams T. L., Bullock R. E., Gibson G. J., Shaw P. J., (2002). Non-invasive ventilation in motor neuron disease: Current UK practice. Amyotrophic Lateral Sclerosis, 3, 145-149.
4. Bradley W. G., Anderson F., Gowda N., Miller R. G., & The ALS CARE Study Group. (2004). Changes in the management of ALS since the publication of the AAN ALS Practice Parameter 1999. Amyotrophic Lateral Sclerosis, 5, 240-244.
5. Braun V., Clarke V., (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
6. Buiting H. M., Rurup M. L., Wijsbek H., van Zuylen L., den Hartogh G., (2011). Understanding provision of chemotherapy to patients with end stage cancer: Qualitative interview study. British Medical Journal, 342, Article d1933.
7. Chio A., Calvo A., Moglia C., Gamna F., Mattei A., Mazzini L.,. Paral S., (2012). Noninvasive ventilation in amyotrophic lateral sclerosis: A 10 year population based study. Journal of Neurology, Neurosurgery & Psychiatry, 83, 377-381. doi: 10.1136/jnnp-2011-300472
8. Corr B., Frost E., Traynor B. J., Hardiman O., (1998). Service provision for patients with ALS/MND: A cost-effective multidisciplinary approach. Journal of the Neurological Sciences, 160 (Suppl. 1), S141-S145.
9. Foley G., Timonen V., Hardiman O., (2014). Acceptance and decision making in amyotrophic lateral sclerosis from a life-course perspective. Qualitative Health Research, 24, 67-77.
10. Forbes R. B., Colville S., Swingler R. J., (2004). Frequency, timing and outcome of gastrostomy tubes for amyotrophic lateral sclerosis/motor neurone disease: A record linkage study from the Scottish Motor Neurone Disease Register. Journal of Neurology, 251, 813-817. doi: 10.1007/s00415-004-0429-9
11. Greenaway L. P., Martin N. H., Lawrence V., Janssen A., Al-Chalabi A., Leigh P.N., Goldstein L. H., (2015). Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: Patients' perspectives. Journal of Neurology, 262 (4), 1002-1013. doi: 10.1007/s00415-015-7665-z
12. Hogden A., Greenfield D., Nugus P., Kiernan M. C., (2012). Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: The views of health professionals. Patient Preference and Adherence, 6, 691-701.
13. Jackson C. E., Lovitt S., Gowda N., Anderson F., Miller R. G., Bradley W. G.,. Pioro E., (2006). Factors correlated with NPPV use in ALS. Amyotrophic Lateral Sclerosis, 7, 80-85.
14. Johnson J., Leigh P. N., Shaw C. E., Ellis C., Burman R., Al-Chalabi A., (2012). Eating-derived pleasure in amyotrophic lateral sclerosis as a predictor of non oral feeding. Amyotrophic Lateral Sclerosis, 13, 555-559.
15. Lechtzin N., Wiener C. M., Clawson L., Davidson M. C., Anderson F., Gowda N.,. ALS CARE Study Group. (2004). Use of noninvasive ventilation in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 5, 9-15.
16. Lemoignan J., Ells C., (2010). Amyotrophic lateral sclerosis and assisted ventilation: How patients decide. Palliative and Supportive Care, 8, 207-213.
17. Lulé D., Ehlich B., Lang D., Sorg S., Heimrath J., Kübler A.,. Ludolph A. C., (2013). Quality of life in fatal disease: The flawed judgement of the social environment. Journal of Neurology, 260, 2836-2843. doi: 10.1007/s00415-013-7068-y
18. Martin N. H., Landau S., Janssen A., Lyall R., Higginson I., Burman R.,. Goldstein L. H., (2014). Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in Amyotrophic Lateral Sclerosis (ALS): A prospective population study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 15, 376-387. doi: 10.3109/21678421.2014.886700
19. McDonald E. R., Hillel A., Wiedenfeld S. A., (1996). Evaluation of the psychological status of ventilatory-supported patients with ALS/MND. Palliative Medicine, 10, 35-41.
20. Motor Neurone Disease Association. (2010). Information Sheet Number 11: PEG and alternative feeding-Making the decision. Retrieved from http://www.mndassociation.org/Resources/MNDA/Life%20with%20MND/information-sheet-11-peg-and-alternative-feeding-making-the-decision.pdf
21. Murphy P. L., Albert S. M., Weber C. M., Del Bene M. L., Rowland L. P., (2000). Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology, 55, 1581-1584.
22. NVivo Qualitative Data Analysis Software (Version 9). (2010). QSR International Pty Ltd, Victoria, Australia.
23. Oliver D., Campbell C., Sykes N., Tallon C., Edwards A., (2011). Decision-making for gastrostomy and ventilatory support for people with motor neurone disease: Variations across UK hospices. Journal of Palliative Care, 27, 198-201.
24. O'Neill C. L., Williams T. L., Peel E. T., McDermott C. J., Shaw P. J., Gibson G. J.,. Bourke S. C., (2012). Non-invasive ventilation in motor neuron disease: An update of current UK practice. Journal of Neurology, Neurosurgery & Psychiatry, 83, 371-376.
25. Roche J. C., Rojas-Garcia R., Scott K. M., Scotton W., Ellis C. E., Burman R.,. Al-Chalabi A., (2012). A proposed staging system for amyotrophic lateral sclerosis. Brain, 135, 847-852. doi: 10.1093/brain/awr351
26. Ruffell T. O., Martin N. H., Janssen A., Wijesekera L., Knights C., Burman R.,. Goldstein L. H., (2013). Healthcare professionals' views on the provision of gastrostomy and noninvasive ventilation to amyotrophic lateral sclerosis patients in England, Wales and Northern Ireland. Journal of Palliative Care, 29 225-231.
27. Self Management UK. (2013). Available from http://selfmanagementuk.org/
28. Van Rosendaal G. M. A., Verhoef M. J., Kinsella T. D., (1999). How are decisions made about the use of percutaneous endoscopic gastrostomy for long-term nutritional support? American Journal of Gastroenterology, 94, 3225-3228.
29. Vesey S., Leslie P., Exley C., (2008). A pilot study exploring the factors that influence the decision to have PEG feeding in patients with progressive conditions. Dysphagia, 23, 310-316.