Patient journey to a specialist amyotrophic lateral sclerosis multidisciplinary clinic: An exploratory study

BMC Health Services Research

Volumn 15, Issue 1, 2015, Pages

  Galvin, M ^a,b   Madden, C ^b   Maguire, S ^b,c   Heverin, M ^b   Vajda, A ^b   Staines, A ^a   Hardiman, O ^b,c  

^a DUBLIN CITY UNIVERSITY   (Ireland)

^b TRINITY COLLEGE DUBLIN   (Ireland)

^c BEAUMONT HOSPITAL   (Ireland)

Author keywords

Amyotrophic lateral sclerosis (ALS); Chart review; Ireland; Medical interview; Multidisciplinary clinic; Patient journey

Indexed keywords

ADULT; AGED; AMBULATORY CARE; AMYOTROPHIC LATERAL SCLEROSIS; FEMALE; HEALTH CARE DELIVERY; HUMAN; IRELAND; MALE; MIDDLE AGED; OUTPATIENT DEPARTMENT; PATIENT ATTITUDE; PATIENT REFERRAL; QUALITY OF LIFE; RETROSPECTIVE STUDY; STATISTICS AND NUMERICAL DATA; TIME TO TREATMENT; UTILIZATION;

ADULT; AGED; AMBULATORY CARE; AMBULATORY CARE FACILITIES; AMYOTROPHIC LATERAL SCLEROSIS; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; IRELAND; MALE; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE; QUALITY OF LIFE; REFERRAL AND CONSULTATION; RETROSPECTIVE STUDIES; TIME-TO-TREATMENT;

EID: 84951023175     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/s12913-015-1229-x     Document Type: Article

References (21)

1. Elamin M, Bede P, Byrne S, Jordan N, Gallagher L, Wynne B, et al. Cognitive changes predict functional decline in ALS a population-based longitudinal study. Neurology. 2013;80(17):1590-7. doi:10.1212/WNL.0b013e31828f18ac.
2. Rooney J, Byrne S, Heverin M, Corr B, Elamin M, Staines A et al. Survival Analysis of Irish Amyotrophic Lateral Sclerosis Patients Diagnosed from 1995-2010. Plos One. 2013;8(9). doi:10.1371/journal.pone.0074733.
3. O'Toole O, Traynor BJ, Brennan P, Sheehan C, Frost E, Corr B, et al. Epidemiology and clinical features of amyotrophic lateral sclerosis in Ireland between 1995 and 2004. J Neurol Neurosurg Psychiatry. 2008;79(1):30-2. doi:10.1136/jnnp.2007.117788.
4. Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. Eur J Neurol. 2012;19(3):350-375. doi:10.1111/j.1468-1331.2011.03501.x.
5. Hardiman O, van den Berg LH, Kiernan MC. Clinical diagnosis and management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2011;7(11):639-49.
6. McDermott CJ, Shaw PJ. Diagnosis and management of motor neurone disease. BMJ. 2008;336(7645):658-62. doi:10.1136/bmj.39493.511759.BE.
7. Rooney J, Byrne S, Heverin M, Tobin K, Dick A, Donaghy C, et al. A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland. J Neurol Neurosurg Psychiatry. 2015;86(5):496-501. doi:10.1136/jnnp-2014-309601.
8. Traynor B, Alexander M, Corr B, Frost E, Hardiman O. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. J Neurol Neurosurg Psychiatry. 2003;74(9):1258-61.
9. Bede P, Oliver D, Stodart J, van den Berg L, Simmons Z, Brannagain DO, et al. Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry. 2011;82(4):413-8. doi:10.1136/jnnp.2010.232637.
10. Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65(8):1264-7. doi:10.1212/01.wnl.0000180717.29273.12.
11. Househam E, Swash M. Diagnostic delay in amyotrophic lateral sclerosis: what scope for improvement? J Neurol Sci. 2000;180(1):76-81.
12. Donaghy C, Dick A, Hardiman O, Patterson V. Timeliness of diagnosis in Motor Neurone Disease: a population-based study. Ulster Med J. 2008;77(1):18.
13. Mitchell JD, Callagher P, Gardham J, Mitchell C, Dixon M, Addison-Jones R, et al. Timelines in the diagnostic evaluation of people with suspected amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND)-a 20-year review: Can we do better? Amyotroph Lateral Scler. 2010;11(6):537-41.
14. O'Brien MR, Whitehead B, Jack BA, Mitchell JD. From symptom onset to a diagnosis of amyotrophic lateral sclerosis/motor neuron disease (ALS/MND): experiences of people with ALS/MND and family carers - a qualitative study. Amyotroph Lateral Scler. 2011;12(2):97-104. doi:10.3109/17482968.2010.546414.
15. Bromberg M. Accelerating the diagnosis of amyotrophic lateral sclerosis. Neurologist. 1999;5(2):63-74.
16. Shaw PJ, Wood-Allum C. Motor neurone disease: a practical update on diagnosis and management. Clin Med. 2010;10(3):252-8.
17. Larson EB, Yao X. Clinical empathy as emotional labor in the patient-physician relationship. Jama-Journal of the American Medical Association. 2005;293(9):1100-6. doi:10.1001/jama.293.9.1100.
18. Kalitzkus V, Matthiessen PF. Narrative-based medicine: potential, pitfalls, and practice. Perm J. 2009;13(1):80-6.
19. Montgomery K. How doctors think: Clinical judgment and the practice of medicine. Oxford University Press; New York 2006.
20. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101.
21. th October 2015