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On the need for person-centered approaches to the care of patients living with motor neurone disease. A Commentary on Aoun, S. et al. (2018) EJPCH 6 (2) 320-328 & Aoun, S. (2018) EJPCH 6 (4) 675-684

Andrew Miles, Jonathan Elliot Asbridge

Abstract


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Keywords


Accompaniment, amyotrophic Lateral Sclerosis (ALS), anxiety, care, carers, centre of care, clinical communication, clinical tools, clinical training, compassionate communities, coping, cure, depression, diagnosis, disease trajectory, distress, economics,

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References


Charcot, J.M. (1874). Amyotrophies spinales deuteropathiques sclérose latérale amyotrophique & Sclérose latérale amyotrophique. Bureaux du Progrès Médical 2 (Oeuvres Complétes) 234-266.

Charcot, J.M. (1897). Sclérose latérale amyotrophique. In: Oeuvres Complètes, Vol 2, pp. 249-266. Paris: Bureaux du Progrès Mèdical. (In English: Amyotrophic lateral sclerosis: symptomatology). In: Sigerson G, trans. Lectures on Diseases of the Nervous System. London: New Sydenham Society; 1881: 192–204

Hardiman, O., Al-Chalabi, A., Chio, A., Corr, E.M., Logroscino, G., Robberecht, W., Shaw, P.J., Simmons, Z. & van den Berg, L.H. (2017). Amyotrophic lateral sclerosis. Nature Reviews Disease Primers 3,17071.

Kiernan, M.C., Vucic S, Cheah, B.C., Turner, M.R., Eisen, A, Hardiman, O., Burrell, J.R. & Zoing, M.C. (2011). Amyotrophic lateral sclerosis. Lancet 377, 942–955.

Ravits, J.M. & La Spada, A.R. (2009). ALS motor phenotype heterogeneity, focality, and spread. Deconstructing motor neuron degeneration. Neurology 73 (10) 805-811.

Cronin, S., Hardiman, O. & Traynor, B.J. (2007). Ethnic variation in the incidence of ALS. A systematic review. Neurology 68, 1002-1007.

Traynor, B.J., Codd, M.B., Corr, B., Forde, C., Frost, E. & Hardiman, O. (1999). Incidence and prevalence of ALS in Ireland, 1995–1997. A population-based study. Neurology 52, 504-509.

. Piemonte and Valle d’Aosta Register for Amyotrophic Lateral Sclerosis (PARALS). (2001). Incidence of ALS in Italy. Evidence for a uniform frequency in Western countries. Neurology 56, 239-244.

Armon, C. (2004). Amyotrophic lateral sclerosis. In: Neuroepidemiology: From principles to practice. Nelson, L.M., Tanner, C.M., Van Den Eeden, S.K., McGuire, V.M., Eds., pp. 162-187. New York: Oxford University Press.

. Beghi, E., Millul, A., Micheli, A., Vitelli, E. & Logroscino, G., for the Slalom Group. (2007). Incidence of ALS in Lombardy, Italy. Neurology 68, 141-145.

Logroscino, G., Beghi, E., Zoccolella, S., Palagano, R., Fraddosio, A., Simone, I.L., Lamberti, P., Lepore, V., Serlenga, L. & the SLAP Registry. (2005). Incidence of amyotrophic lateral sclerosis in southern Italy: a population based study. Journal of Neurology, Neurosurgery and Psychiatry 76, 1094-1098.

Forbes, R.B., Colville, S., Parratt, J. & Swingler, R.J. (2007). The incidence of motor neuron disease in Scotland. Journal of Neurology 254, 866-869.

Logroscino, G., Traynor, B.J., Hardiman, O., Chio, A., Couratier, P., Mitchell, J.D., Swingler, R.J. & Beghi, E. (EURALS). (2008). Descriptive epidemiology of amyotrophic lateral sclerosis: new evidence and unsolved issues. Journal of Neurology, Neurosurgery and Psychiatry 79, 6-11.

Alonso, A., Logroscino, G., Jick, S.S. & Hernan, M.A. (2009). Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population-based study. European Journal of Neurology 16 (6) 745-751.

. Kiernan, M. C. (2018). Progress towards therapy in motor neuron disease. Nature Reviews Neurology 14, 65–66

Aoun, S., Hogden, A. & Kho, L.K. (2018). “Until there is a cure, there is care”. A person-centered approach to supporting the wellbeing of people with Motor Neurone Disease and their family carers. European Journal for Person Centered Healthcare 6 (2) 320-328.

Aoun, S. (2018). The palliative approach to caring for motor neurone disease: from diagnosis to bereavement. European Journal for Person Centered Healthcare 6 (4) 675-684.

Bryan, C.S. (1997). Osler: Inspirations from a Great Physician. Oxford University Press, Oxford.

Aoun, S.M., Bentley, B., Funk, L., Toye, C., Grande, G. & Stajduhar, K.J. (2013). A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliative Medicine 27 (5) 437-446.

Harris, M., Thomas, G., Thomas, M, Cafarella, P., Stocks, A., Greig, J. & McEvoy, R.D. (2018). Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: A scoping review and synthesis. Palliative & Supportive Care 16 (2) 228-237.

Bakker, M., Creemers, H., Schipper, K., Beelen, A., Grupstra, H., Nollet, F. & Abma, T. (2015). Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers, and professionals. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 16, 180-186.

Wee, B. (2017). Ambitions for palliative and end of life care: a relentless focus on the person. European Journal for Person Centered Healthcare 5 (4) 429-432.

Kellehear, A. (2013). Compassionate communities: end-of-life care as everyone’s responsibility. QJM 106 (12) 1071-1075.

Abel, J. (2018). Compassionate communities and end-of-life care. Clinical Medicine 18 (1) 6-8.

Hilbers, J., Rankin-Smith, H., Horsfall, D. & Aoun, S. (2018). “We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia. European Journal for Person Centered Healthcare 6 (4) 685-692.

Kellehear, A. (2018). Commentary on: Hilbers, J., Rankin-Smith, H., Horsfall, D. & Aoun, S. (2018). “We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia. European Journal for Person Centered Healthcare 6 (4) 693-694.

Miles, A. (2018). Dying, death and bereavement - on a modern person-centered approach to the end of life. Commentary on: Hilbers, J., Rankin-Smith, H., Horsfall, D. & Aoun, S. (2018). “We are all in this together”: Building capacity for a community-centred approach to caring, dying and grieving in Australia. European Journal for Person Centered Healthcare 6 (4) 685-692. European Journal for Person Centered Healthcare 7 (1) 211-216.

Horsfall, D. (2018). Developing compassionate communities in Australia through collective caregiving: a qualitative study exploring network-centred care and the role of the end of-life sector. Annals of Palliative Medicine 7 (Supplement 2) S42-S51.

Aoun, S., Breen, L., White, I., Rumbold, B. & Kellehear, A. (2018). What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the Compassionate Communities approach. Palliative Medicine 32 (8) 1378-1388.

Aoun, S.M., Breen, L.J., Howting, D., Edis, R., Oliver, D., Henderson, R., O’Connor, M., Harris, R. & Birks, C. (2016). Receiving the news of a diagnosis of motor neurone disease: What does it take to make it better? Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 17, 168-178.

Aoun, S.M., Breen, L.J., Oliver, D., Henderson, R.D., Edis, R., O’Connor, M., Howling, D., Harris, R. & Birks, C. (2017). Family carers’ experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey. Journal of Neurological Sciences 372, 144-151.

Aoun, S.M., Breen, L.J., Edis, R., Henderson, R., Oliver, D., Harris, R., Howting, D., O’Connor, M. & Birks, C. (2016). Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists’ perspectives. Journal of Neurological Sciences 367, 368-374.

Connor, S.R. & Bermedo, M.C.S. (2014). Global Atlas of Palliative Care at the End of Life. Worldwide Palliative Care Alliance. Available at: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

Rooney, J., Byrne, S., Heverin, M., Tobin, K., Dick, A., Donaghy, C. & Hardiman. O. (2015). A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Norther Ireland. Journal of Neurology, Neurosurgery and Psychiatry 86 (5) 496-501.

Aoun, S.M., Deas, K., Kristjanson, L.J. & Kissane, D.W. (2017). Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool. Palliative & Supportive Care 15 (1) 32-43.

Miles, A. & Asbridge, J.E. (2014). Carers - vital partners in increasing the person-centeredness of health and social care systems. European Journal for Person Centered Healthcare 2 (4) 421-424.

Miles, A. & Asbridge, J.E. (2018). Person-centeredness in health and social care - what exactly is it that patients and their carers want? European Journal for Person Centered Healthcare 6 (1) 1-4.

Aoun, S.M., Grande, G., Howting, D., Deas, K., Toye, C., Troeung, L., Stajduhar, K. & Ewing, G. (2015). The impact of the carer support needs assessment tool (CSNAT) in community palliative care using a stepped wedge cluster trial. PLoS One 10 (4) e123012.

Aoun, S.M., Ewing, G., Grande, G., Toye, C. & Bear, N. (2018). The Impact of Supporting Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death. Journal of Pain and Symptom Management 55 (2) 368-378.

Miller, R.G., Jackson, C.E., Kasarskis, E.J., England, J.D., Forshew, D., Johnston, W., Kalra, S., Katz, J.S., Mitsumoto, H., Rosenfeld, J., Shoesmith, C., Strong, M.J., Woolley, S. C., & the Quality Standards Subcommittee of the American Academy of Neurology (2009). Practice Parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): Report of the Quality Standards Subcommittee of the American Academy of Neurology.” Neurology 73 (15) 1227-1233.

Mitsumoto, H., Bromberg, M., Johnston, W., Tandan, R., Byock, I., Lyon, M., Miller, R.G., Appel, S.H., Benditt, J., Bernat, J.L., Borasio, G.D., Carver, A.C., Clawson, L., Del Bene, M.L., Kasarskis, E.J., Legrand, S.B., Mandler, R., McCarthy, J., Munsat, T. & Newman, D. (2005). Promoting excellence in end-of-life care in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 6 (3) 145-154.

Miles, A. & Asbridge, J. E. (2016). The chronic illness problem. The person-centered solution. European Journal for Person Centered Healthcare 4 (1) 1-5.

Kurt, A., Nijboer, F., Matuz, T. & Kubler, A. (2007). Depression ¨ and anxiety in individuals with amyotrophic lateral sclerosis: epidemiology and management. CNS Drugs 21 (4) 279-291.

Roos, E., Mariosa, D., Ingre, C., Lundholm, C., Wirdefeldt, K., Roos, P.M. & Fang, F. (2016). Depression in amyotrophic lateral sclerosis. Neurology 86 (24) 2271-2277.

de Godoy Rousseff Prado, L., Bicalho, I,C,S.B., Vidigal-Lopes, M., de Godoy Rousseff Prado, V., Gomez, R.S., Cruz de Souza, L. & Teixeira, A.L. (2017). Depression and anxiety in a case series of amyotrophic lateral sclerosis: frequency and association with clinical features. Einstein (Sao Paulo) 15 (1) 58-60.

Simmons, Z., Bremer, B.A., Robbins, R.A., Walsh, S.M. & Fischer, S. (2000). Quality of life in ALS depends on factors other than strength and physical function. Neurology 55 (3) 388-392.

Chio, A., Gauthier, A., Montuschi, A., Calvo, A., Di, V., Ghiglione, P., & Mutani, R. (2004). A cross sectional study on determinants of qualify of life in ALS. Journal of Neurology, Neurosurgery and Psychiatry 75 (11) 1597-1601.

Roach, A.R., Averill, A.J., Segerstrom, S.C. & Kasarskis, E.J. (2009). The dynamics of quality of life in ALS patients and caregivers. Annals of Behavioral Medicine 37 (2) 197-206.

Gallagher, D. & Monroe, B. (2006). Psychosocial care. In: Palliative Care in Amyotrophic Lateral Sclerosis: From Diagnosis to Bereavement. Oliver, D., Borasio, G.D. & Walsh, D. Eds. 2nd Edition. pp. 143-168. Oxford University Press, Oxford, UK.

ESPCH Clinical Conferences and Guidance Documents Programme (2019 - 2029). For information on the nature of the programme and its associated methodologies, and for academic collaboration and philanthropic/commercial involvement, contact Professor Andrew Miles, ESPCH Senior Vice President/Secretary General: andrew.miles@pchealthcare.org.uk.




DOI: http://dx.doi.org/10.5750/ejpch.v7i1.1735

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