Abstract
BackgroundPalliative care education among all stakeholders involved in the care of patients with late-stage Parkinson’s disease is not adequate. In fact, there are many unmet educational and training needs as confirmed with a targeted, narrative literature review.MethodsTo address these needs we have developed the “Best Care for People with Late-Stage Parkinson’s Disease” curriculum toolkit. The toolkit is based on recommendations and guidelines for training clinicians and other healthcare professionals involved in palliative care, educational material developed in recent research efforts for patients and caregivers with PD and consensus meetings of leading experts in the field. The final version of the proposed toolkit was drafted after an evaluation by external experts with an online survey, the feedback of which was statistically analysed with the chi-square test of independence to assess experts’ views on the relevance and importance of the topics. A sentiment analysis was also done to complement statistics and assess the experts positive and negative sentiments for the curriculum topics based on their free text feedback.ResultsThe toolkit is compliant with Kern’s foundational framework for curriculum development, recently adapted to online learning. The statistical analysis of the online survey, aiming at toolkit evaluation from external experts (27 in total), confirms that all but one (nutrition in advanced Parkinson’s disease) topics included, as well as their objectives and content, are highly relevant and useful.ConclusionsIn this paper, the methods for the development of the toolkit, its stepwise evolution, as well as the toolkit implementation as a Massive Open Online Course (MOOC), are presented. The “Best Care for People with Late-Stage Parkinson’ s disease” curriculum toolkit can provide high-quality and equitable education, delivered by an interdisciplinary team of educators. The toolkit can improve communication about palliative care in neurological conditions at international and multidisciplinary level. It can also offer continuing medical education for healthcare providers.
Highlights
Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson’s disease is not adequate
The first version of the toolkit was largely based on recent surveys, recommendations and guidelines for palliative care education and training of healthcare professionals, as well as on content recently developed for educating patients and caregivers on Parkinson’s disease (PD)
The evaluation of the resulting training content and course modules which demonstrated performance gain on all items considered [7] as well as the assessment of palliative care education related recommendations and publications [8–11] and the results of previous projects on education for PD [12, 13] led to the first version of the curriculum
Summary
Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson’s disease is not adequate. The World Health Organization (WHO) has made a strong commitment towards developing palliative care structures as an important component of integrated treatment for young and old patients at any stage of illness [1]. This commitment includes Parkinson’s disease (PD) with patients and their caregivers having considerable (and mounting) unmet physical, psychosocial and spiritual needs, and experiencing great problems with coordination and continuity of care [2, 3]. It has been demonstrated that patients with chronic neurologic disorders suffer from the burden of disease progression without the hope for a cure. Symptom management and palliative care approaches should be discussed from the beginning of the illness
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