Person-centred decision support tools for terminal, progressive neurological disease: a study protocol

A. Hogden, D. Greenfield, J. Caga, X. Cai

Research output: Contribution to conferencePosterpeer-review


Objectives: Progressive neurological conditions such as motor neurone disease (MND) are challenging to well-timed and effective patient decision-making. Our aim is to create decision tools to support patients, families and health professionals through symptom management and quality of life choices.

Methods: The study is being conducted June 2015 to May 2016, using a modified Delphi process. Rounds of iterative consultation with participants will be used to arrive at consensus on decision tool content and format.

Results: A seven-step process is being used to develop the decision support tools. Participants will form expert panels, to provide feedback on which the development and validation of the tools will be based. Panel members will be drawn from MND patients, family carers and health professionals, support association workers, peak body representatives, and MND clinical researchers and decision tool researchers. The tools will be developed according to the International Patient Decision Aid Standards criteria. They will draw on MND evidence-based research, best practice guidelines and user-centred
design principles.
Topics to be considered by the expert panels include: disease-slowing medication; secretion management options; assisted ventilation; artificial nutrition and hydration; advance care planning; genetic testing; and voice banking. Completed tools will provide information on the benefits, risks, costs and legal issues for each option, and incorporate patients’ personal values and family wishes into their decision.

Conclusion: The decision tools will provide a useful and informative package to clarify patients’ preferences, and assist patients to make difficult decisions in a timely way. Moreover, the process used to develop the decision support tools will provide insight into the benefits and challenges of co-production with patients, carers and health professionals as tool users. Person-centred care is promoted by the inclusion of tool users and tool designers on the expert panels, and the consultative process used to develop the tools will ensure they are useful and feasible for clinical care. By enhancing engagement between patients, families and health professionals, patients will be assisted to make complex
and confronting decisions in a timely way. Patients and families will be informed of the consequences of pursuing, and of declining, available medications, procedures, services and equipment. This is expected to lead to improved coordination of care throughout the disease trajectory, and prevention of avoidable emergency hospital admissions.
Besides supporting decision making in MND, the tools, and their process of development, could have wider clinical application for a range of degenerative neurological conditions, and have potential to be expanded to countries and
language groups beyond the initial study.
Original languageEnglish
Number of pages1
Publication statusPublished - 2016
Event33rd International Society for Quality in Health Care Conference: Change and Sustainability in Healthcare Quality: the Future Challenges - Tokyo, Japan
Duration: 16 Oct 201619 Oct 2016


Conference33rd International Society for Quality in Health Care Conference


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