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Palliative care in Parkinson’s disease

Periodic Reporting for period 1 - PD_Pal (Palliative care in Parkinson’s disease)

Reporting period: 2019-01-01 to 2020-06-30

Parkinson’s Disease (PD) is the second most common neurodegenerative disorder and is characterized in its advanced stages by motor and non-motor complications causing progressive loss of autonomy in activities of daily living, poor quality of life, marked caregiver distress, and high utilization of medical services. Similar to cancer patients, albeit for much longer duration, PD patients have considerable (and mounting) unmet physical, psychosocial and spiritual needs, and experience great problems with continuity of care.
The overall ambition of PD_Pal is to validate a new model of palliative care which would be easily integrated with traditional management when disability limits mobility and independence. PD_Pal will provide an added layer of support to patients, their loved ones, and treating clinicians.
PD_Pal randomised controlled trial will provide evidence on the effectiveness of specialized, multidisciplinary, outpatient palliative care intervention (Advance Care Planning) in improving family satisfaction, symptom management and quality of life. PD_Pal will also further prove the feasibility and economic sustainability of this approach by the active involvement of patients lay associations as well relevant medical societies.
PD_Pal team includes leading experts in both neurology and palliative care with key-roles in both national and international PD working groups. PD_Pal will develop a new set of evidence-based Guidelines and a Massive Online Course (MOOC) for Palliative Care in PD involving in the process experts from the European Association for Palliative Care, the European Academy of Neurology and the Movement Disorders Society. Thus, PD_Pal is best positioned to transfer this knowledge to all European countries and ensure that “PD_Pal Guidelines” will translate into best practice. The PD_Pal MOOC “Best Care for People with Late Stage Parkinson” will be integrated into the WHO supported interdisciplinary post-graduate palliative care curriculum.
Guidelines and recommendations development activities have been initiated with a review of literature and mapping of relevant topics to be investigated among the different stakeholders (clinicians, caregivers and patients) and among literature. An intense networking activity has been done in the first part of the project to create a diverse and rich environment of expert around PD_Pal project. In order to receive the endorsement of guidelines from the Movement Disorder Society task force, we have contacted and formally invited the Task Force to support and contribute to the guideline development since project start. Also, the consortium established strong link between European Academy of Neurology, European Association of Palliative Care, Movement Disorders Society and PD_Pal. In order to proceed with a comprehensive review of the status of the art and an integrated point of view on Palliative Care for Parkinson’s disease people, we’ve collected and reviewed documentation containing the most recent advances in the field of palliative care for neurological diseases. Much of the work done to design the PD_Pal Clinical Study, was aimed at studying the best tools of intervention and data collection for the identification of prognostic factors in the study population. Based on the literature and discussion with experts in the field of palliative care, we decided to enrich the nurse-led intervention with a workbook for patients. A training program for the PD_Pal nurses was developed, the workbook was pretested with patients and the execution of the nurse-training has started.
Regarding the Health Technology Assessment entailing the use of PDmonitor®, PD Neurotechnology has already initiated the conduct of its own clinical trials in order to evaluate the cost effectiveness of a telemonitoring solution, the PDMonitor® and the improvement in QoL for patients and caregivers. Furthermore, the PD_Pal clinical trial data will also be used for economic analysis from a health and social care cost perspective. Finally, the Massive Online Open Course has been designed by the clinical team and is being developed as an advanced Palliative Care training module related to Parkinson as a part of wider interdisciplinary graduate and post-graduate palliative care curriculum. The online course is built on top of the open source learning platform Open edX, created in 2012 by MIT and Harvard University.
Timely identification of PD patients and their palliative care needs is the first key for the success of the intervention. Fully understanding the palliative care needs is the other key. The relevant costs are increased when time and need are not correctly addressed as long as Parkinson's disease advances. PD_Pal will draft guidelines and recommendations to guide the need and timing of clinical and hospice referrals and define the role of the specialists and of the multidisciplinary palliative care team members with emphasis on Social Sciences and Humanities. Moreover, given the interaction with the European Academy of Neurology the new guidelines will be easily transmitted to all European National neurological society to be translated into clinical practice. The Guidelines will also be endorsed by the Movement Disorders Society’s (MDS) Task Force on Palliative Care and will thus have International validity and more chances of being integrated in different healthcare systems.
Prognostic risk factors and indicators, particularly for 6-month survival to alert physicians for potentially appropriate referrals as well as for high-risk patients and caregivers will be studied. The candidate prognostic factors and indicators will be validated within the PD_Pal clinical study. PD_Pal is based on the intervention ParkinsonSupport which was developed in the Netherlands and consists of specifically trained neurology nurse practitioners (NPs) who provide and coordinate transmural, integrated and proactive palliative care, including Advance Care Planning (ACP). Similar interventions are gaining interest and provide evidence on the high satisfaction with and retention in the program. PD_Pal, among others, will prospectively assess person-centred outcomes, the quality of life of patients and caregiver, the effect of using telemedicine on sustainability, and cost effectiveness.
In PD_Pal, the primary analysis will be from a health and social care cost perspective, with secondary analyses from a societal perspective. The objective of the PD_Pal intervention is to improve health and quality of life of both patients and caregivers as well as revalidate the provision of long-term care and the effectiveness of the proposed procedures and organisational or supportive system. The Health Technology Assessment will inform policy makers by providing them with objective, transparent, and scientifically based information in order to support their future decision for palliative care models. The assessment of the technology will be a multidisciplinary process that will summarise information about the medical, social, economic and ethical issues related to the use of PDMonitor in a systematic, transparent, unbiased, robust manner. In the PD_Pal approach information, education, and an open debate with patients and caregivers are the cornerstones of the palliative care intervention. This will provide knowledge about the motor status and complications, and address the specific physical and emotional needs of PD patients, in need of palliative care