Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

被引:115
作者
Hogden, Anne [1 ]
Foley, Geraldine [2 ]
Henderson, Robert D. [3 ]
James, Natalie [4 ]
Aoun, Samar M. [5 ]
机构
[1] Macquarie Univ, Australian Inst Hlth Innovat, Sydney, NSW, Australia
[2] Univ Dublin, Trinity Coll Dublin, Discipline Occupat Therapy, Sch Med, Dublin, Ireland
[3] Royal Brisbane & Womens Hosp, Neurol, Brisbane, Qld, Australia
[4] St Josephs Hosp, St Vincents Hlth Network, Motor Neurone Dis MND Serv, Commun & Assist Technol CAT Clin, Sydney, NSW, Australia
[5] Curtin Univ, Sch Nursing Midwifery & Paramed, Fac Hlth Sci, Perth, WA, Australia
关键词
quality of life; interdisciplinary; interprofessional; palliative care; care coordination; motor neuron disease; MOTOR-NEURON DISEASE; QUALITY-OF-LIFE; PRACTICE PARAMETER UPDATE; PALLIATIVE CARE; DECISION-MAKING; FRONTOTEMPORAL DEMENTIA; STANDARDS SUBCOMMITTEE; SYMPTOM MANAGEMENT; CAREGIVER STRAIN; AMERICAN ACADEMY;
D O I
10.2147/JMDH.S134992
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2-3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients' quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered.
引用
收藏
页码:205 / 215
页数:11
相关论文
共 90 条
[1]   EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force [J].
Andersen, Peter M. ;
Abrahams, Sharon ;
Borasio, Gian D. ;
de Carvalho, Mamede ;
Chio, Adriano ;
Van Damme, Philip ;
Hardiman, Orla ;
Kollewe, Katja ;
Morrison, Karen E. ;
Petri, Susanne ;
Pradat, Pierre-Francois ;
Silani, Vincenzo ;
Tomik, Barbara ;
Wasner, Maria ;
Weber, Markus .
EUROPEAN JOURNAL OF NEUROLOGY, 2012, 19 (03) :360-E24
[2]   Supporting family caregivers to identify their own needs in end-of-life care: Qualitative findings from a stepped wedge cluster trial [J].
Aoun, Samar ;
Deas, Kathleen ;
Toye, Chris ;
Ewing, Gail ;
Grande, Gunn ;
Stajduhar, Kelli .
PALLIATIVE MEDICINE, 2015, 29 (06) :508-517
[3]   Family carers' experiences of receiving the news of a diagnosis of Motor Neurone Disease: A national survey [J].
Aoun, Samar M. ;
Breen, Lauren J. ;
Oliver, David ;
Henderson, Robert D. ;
Edis, Robert ;
O'Connor, Margaret ;
Howting, Denise ;
Harris, Rodney ;
Birks, Carol .
JOURNAL OF THE NEUROLOGICAL SCIENCES, 2017, 372 :144-151
[4]   Breaking the news of a diagnosis of motor neurone disease: A national survey of neurologists' perspectives [J].
Aoun, Samar M. ;
Breen, Lauren J. ;
Edis, Robert ;
Henderson, Robert D. ;
Oliver, David ;
Harris, Rodney ;
Howting, Denise ;
O'Connor, Margaret ;
Birks, Carol .
JOURNAL OF THE NEUROLOGICAL SCIENCES, 2016, 367 :368-374
[5]   Receiving the news of a diagnosis of motor neuron disease: What does it take to make it better? [J].
Aoun, Samar M. ;
Breen, Lauren J. ;
Howting, Denise ;
Edis, Robert ;
Oliver, David ;
Henderson, Robert ;
O'Connor, Margaret ;
Harris, Rodney ;
Birks, Carol .
AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION, 2016, 17 (3-4) :168-178
[6]   A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions [J].
Aoun, Samar M. ;
Bentley, Brenda ;
Funk, Laura ;
Toye, Chris ;
Grande, Gunn ;
Stajduhar, Kelli J. .
PALLIATIVE MEDICINE, 2013, 27 (05) :437-446
[7]   Motor Neurone Disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study [J].
Aoun, Samar M. ;
Connors, Sianne Lee ;
Priddis, Lynn ;
Breen, Lauren J. ;
Colyer, Sue .
PALLIATIVE MEDICINE, 2012, 26 (06) :842-850
[8]   Need and value of case management in multidisciplinary ALS care: A qualitative study on the perspectives of patients, spousal caregivers and professionals [J].
Bakker, Minne ;
Creemers, Huub ;
Schipper, Karen ;
Beelen, Anita ;
Grupstra, Hepke ;
Nollet, Frans ;
Abma, Tineke .
AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION, 2015, 16 (3-4) :180-186
[9]   Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives [J].
Bede, Peter ;
Oliver, David ;
Stodart, James ;
van den Berg, Leonard ;
Simmons, Zachary ;
Brannagain, Doiminic O. ;
Borasio, Gian Domenico ;
Hardiman, Orla .
JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY, 2011, 82 (04) :413-418
[10]   Standards of palliative care for patients with amyotrophic lateral sclerosis: results of a European survey [J].
Borasio, GD ;
Shaw, PJ ;
Hardiman, O ;
Ludolph, AC ;
Luis, MLS ;
Silani, V .
AMYOTROPHIC LATERAL SCLEROSIS, 2001, 2 (03) :159-164