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Medical Decision Making in Multiple System Atrophy: developing personalized best medical care with integrated telemedicine and mobile palliative care for individuals with multiple system atrophy - A monocentric, randomized, open-label clinical study with raterblinded evaluation of motor progression over the interventional period

Abstract

End of life challenges MSA patients, their caregivers and treating physicians with many ethical dilemmas: withholding or withdrawing medications, food refusal vs. gastrostomy feeding, invasive ventilation, the donot-resuscitate order.
Advanced care planning (ACP) is an important ongoing process of communication, where patients can inform the clinical team about their values, goals and preferences in medical treatment during serious and chronic illness. ACP is an instrument to promote autonomy of patients and their individual concept of quality of life (QoL), but the ethical perspective has not been systematically focused on in the peculiar setting of people living with MSA yet.
The main research questions in this PA are: what are the wishes and perceptions of a decent end-of-life for people living with MSA? How is it possible to improve the QoL of these people and their caregivers?To answer these questions, people with MSA and their care-givers recruited in the interventional trial of MeDeMSA PA3 will be invited to join semi-structured interviews at the study begin and 12 months into the interventional procedures (Kallio, Pietilä, Johnson, & Kangasniemi, 2016).
The aim is to evaluate the patients’ and caregivers’ preferences for involvement in health-care decisions, which kind of information communication is
relevant for their decision-making process, which is their perception of telemedicine and mobile palliative care, the legal and regulatory aspects thereof and, ultimately, their perspectives on the patient–physician relationship and their concept of QoL, which is essential for ACP.
To achieve these goals the following worksteps are planned: i. A systematic review of the ethical and regulatory state of the art on shared-decision making, ethical guidelines, ACP, laws and regulations related to end-of life and palliation in neurodegenerative disorders; ii. an Autonomy Preference Index survey of people with MSA recruited in PA3 and their care-givers; iii. a dynamic contribution to the clinical MeDeMSA board meetings; iv. an in-depth focus on telemedicine for people with MSA and the assessment of its regulatory and ethical aspects and v. the development of a bioethical framework and educational material for MSA patients and their caregivers. In permanent close cooperation with the other PA of the MeDeMSA RG, the aim of PA5 is to establish a bioethical framework for patient-centered medical decisions in the MeDeMSA circle of care.

Keywords

Advance Care Planning

MSA

Multisystematrophie

Neurodegeneration

Palliativmedizin

Project Leader:

Schwingenschuh Petra

Duration:

01.10.2024-31.03.2028

Programme:

Forschungsgruppen

Type of Research

applied research

Staff

Schwingenschuh, Petra, Project Leader

MUG Research Units

Department of Neurology

Funded by

FWF, Fonds zur Förderung der Wissenschaftlichen Forschung, Wien, Austria

Project results published

> MeDeMSA care study protocol: developing personaliz... J Neural Transm (Vienna). 2025;