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Development of a model to guide decision-making in amyotrophic lateral sclerosis multidisciplinary care

Citation

Hogden, A and Greenfield, D and Nugus, P and Kiernan, M, Development of a model to guide decision-making in amyotrophic lateral sclerosis multidisciplinary care, Health Expectations, 18, (5) pp. 1769-1782. ISSN 1369-6513 (2014) [Refereed Article]

DOI: doi:10.1111/hex.12169

Abstract

© 2015 John Wiley & Sons Ltd.Background: Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS . Objective: The aim was to examine the question: how can decision making that is both effective and patient-centred be enacted in ALS multidisciplinary care? Setting and participants: Fifty-four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi-structured interviews. Interviews were transcribed, coded and analysed thematically. Results: Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision-making process; patient-centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non-specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: 'Participant Engagement'; 'Option Information'; 'Option Deliberation'; and 'Decision Implementation'. Discussion: Effective and patient-centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient-centred decision making, by incorporating patients' cyclic decision-making patterns and facilitating carer inclusion in decision processes. Conclusions: The model captures the complexities of patient-centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.

Item Details

Item Type:Refereed Article
Keywords:Change, Challenges, Healthcare, Healthcare reform, Accreditation, Survey reliability
Research Division:Medical and Health Sciences
Research Group:Other Medical and Health Sciences
Research Field:Medical and Health Sciences not elsewhere classified
Objective Division:Health
Objective Group:Health and Support Services
Objective Field:Health and Support Services not elsewhere classified
Author:Greenfield, D (Professor David Greenfield)
ID Code:110067
Year Published:2014
Web of Science® Times Cited:3
Deposited By:Tasmanian School of Business and Economics
Deposited On:2016-07-12
Last Modified:2016-07-12
Downloads:0

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