Objective: To develop a novel care approach using a nurse led telephone helpline specialized and dedicated to persons with Parkinson’s Disease (PD).

Background: PD is characterized by a wide variety of motor and non-motor symptoms, often poorly recognized and treated, which cause significant burden on the quality of life (QoL) in patients and their caregivers. Despite the fact that direct and indirect health costs across Europe related to PD are high and increasing, many PD patients still experience a gap in the accessibility to specialized health services.

Method: A team of Movement Disorder Specialists (MDS), neurologists and nurses, from Italy, UK and the Netherlands met to discuss and evaluate current unmet needs in PD care. They identified a telephone support line as the most suitable model in terms of cost/benefit to improve the quality of life of patients. The service is delivered by Parkinson Disease Nurse Specialists (PDNS) who will receive specific Parkinson’s training in expert centres. A pilot group of 10 persons with PD affiliated with a Parkinson Center in Milan was enrolled to test the model.

Results: The novel nursing telecare model developed a customized application to guide and capture data from each interaction with the PDNS. The PDNS utilises a decision tree integrated into a digital platform structured on an evidence-based approach and clinical expertise. Decision trees topics were selected covering the most frequent problems reported by PD patients.After informed consent has been acquired, the PDNS completes a registration document containing the demographic, social, family and clinical information. Patients are free to call the support line to ask advice on a range of topics including Constipation, Sleep disorders, etc.

Conclusion: We introduce an innovative model of telenursing specifically dedicated to PD persons and caregivers that can be integrated into current health care systems. The objective of improving patients’ quality of life and preventing complications and inappropriate health care interventions can potentiallyreduce healthcare costs. Further studies are needed to demonstrate the efficacy of the model on clinical and financial outcomes.

References: Bloem BR, Stocchi F. Move for Change Part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson’s Disease. European Journal of Neurology 2015, 22: 133–141

« Back to 2019 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-an-innovative-telephone-support-line-for-people-with-parkinsons-disease/