File(s) not publicly available
Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care
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.
History
Publication title
Health ExpectationsVolume
18Pagination
1769-1782ISSN
1369-7625Department/School
College Office - College of Business and EconomicsPublisher
Wiley-Blackwell Publishing Ltd.Place of publication
United KingdomRepository Status
- Restricted