Technikakzeptanz und ethische, rechtliche, soziale sowie medizinische Implikationen von Electronic-Health-Technologien aus der Sicht von Parkinson-Patienten
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Abstract
Parkinson's disease, the second most common neurodegenerative disease, is subject to
demographic change and patient numbers will continue to rise. The disease progresses
slowly and places an increasing burden on the daily lives of patients and their caregivers.
Gait disturbance is a key symptom, which can lead to falls and affect other co-morbidities.
In particular, the combination of motor and non-motor symptoms contributes to the
complexity of the disease and requires multimodal therapy. To date, there has been little
use of telehealth tools in home care. Technologies such as wearables could improve
care for people with Parkinson's disease. In addition to the advantages of wearables,
such as long-term monitoring and objective data collection, there are also disadvantages
to telehealth, such as excessive demands and the need to perform.
According to the UTAUT model, patient technology acceptance is influenced by several
factors, although the factors of illness and disability have not yet been considered. To
promote the implementation of telehealth, the background of its use and rejection must
be examined more closely. This qualitative study aimed to investigate whether wearables
as e-health technologies can improve medical care from the perspective of Parkinson's
patients and which ethical, legal, social and medical implications play a role in this
context.
A total of 18 patients with typical and atypical Parkinson's syndrome were included in the
study between March 2022 and April 2023. The patients had to be diagnosed with
Parkinson's for more than one year and not exceed stage 4 according to Hoehn and
Yahr. The age range was set at 18 to 85 years. The sample consisted of 13 men and 5
women, with an average age of 62.61 years.
Patients who refused to use the wearable were still able to take part in the study by
means of a semi-structured interview without a subsequent usage period, resulting in
three so-called ‘non-users’ out of the 18 included patients. The ‘users’, on the other hand,
went through a usage period of five days. The PDMonitor® from PD Neurotechnology®
was employed as the wearable. Follow-up procedures included a final interview with the
study physician and a second semi-structured interview with the patient. In addition,
various clinical tests were carried out and questionnaires were completed. The interviews
were analysed using a structured qualitative content analysis method according to
Kuckartz and Rädiker with the help of the software MAXQDA, a tool for computer-
assisted qualitative data and text analysis. Analysis resulted in a multi-level coding
system.
Our results show that the variable ‘expectation of performance’ plays a significant role
for Parkinson's patients and that a lack of perceivable utility can favour the rejection of
e-health technologies. On the one hand, patients in the early stages could benefit from
wearables in terms of symptom awareness. However, our results show that acute deficits
requiring therapy adjustment are a prerequisite for the use of wearables for many
patients, which in turn underscores the benefits in later stages. Ultimately, both patient
groups may benefit from e-health technologies.
For the patients, it was important not to consciously perceive the wearables in their daily
lives. To ensure this, the design has to be individually adapted to the patients' needs.
Appearance plays a rather subordinate role in this. Ultimately, comfort is the factor that
determines user effort and influences user behavior. For app use, the ability to adjust the
time and dose settings should be provided to ensure flexibility, which can be helpful for
Parkinson's patients. In this case, patients are willing to tolerate more effort to achieve
the desired performance.
Maintaining employment is a crucial factor for the quality of life of many Parkinson's
patients. Our results emphasize that the autonomy of patients using wearables should
be maintained. This includes allowing patients to determine the period of use
independently in order to prevent the behavioral intention from being negatively
influenced by the profession as a social implication and, in the worst case, leading to a
rejection of the technology.
Data protection was emphasized by the patients interviewed. They agreed that absolute
protection cannot be guaranteed and that they are exposed to a potential risk of data
misuse. Traceability of the data collected and transmitted was considered crucial. In this
context, data protection also influences the perceived potential for surveillance and
intrusion into privacy. The latter was safeguarded from the patient's point of view by
maintaining their autonomy through the independent use of wearables.
Wearables were considered useful for acute therapeutic issues and a specific need for
action, with a period of up to three weeks considered useful to meet performance
expectations without increasing the effort required. Patients considered therapy
optimization to be the greatest benefit of wearables, followed by the objectivity of the
data.
Wearables represent a useful addition to standard care but cannot replace it. In the long
term, Parkinson's patients who experience an improvement in their care through the use
of wearables and consciously perceive this positive change may be willing to prefer e-
health care over standard care. At the present time, however, a complete replacement
would be too drastic. As in many other areas, the change towards telemedicine cannot
take place instantly. It is important that patients recognize the individual benefits they
may derive from the use of wearables, and it should be considered individually for each
patient whether the use of e-health technologies is beneficial.
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This item has been published with the following license: In Copyright