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What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Citation

Hodgen, A and Greenfield, D and Nugus, P and Kiernan, M, What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives, Patient Preference and Adherence, 6 pp. 829-838. ISSN 1177-889X (2012) [Refereed Article]


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Copyright 2012 Hogden et al. Licensed under Creative Commons Attribution-NonCommercial 3.0 Unported (CC BY-NC 3.0) https://creativecommons.org/licenses/by-nc/3.0/

DOI: doi:10.2147/PPA.S37851

Abstract

Background: Patients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patientsí ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS. Methods: An exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes. Results: Decision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patientsí reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patientsí personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs. Conclusion: Decision-making for symptom management and quality of life in ALS care is enhanced when the patientís personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

Item Details

Item Type:Refereed Article
Keywords:consumer perspectives, patient decision-making, multidisciplinary care, amyotrophic lateral sclerosis
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:110961
Year Published:2012
Web of Science® Times Cited:18
Deposited By:Tasmanian School of Business and Economics
Deposited On:2016-08-24
Last Modified:2017-11-03
Downloads:46 View Download Statistics

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