Parkinson’s Disease: We Care!

In a benchmark relative to eight other chronic disorders, Parkinson’s disease has emerged as one of the most debilitating conditions, with a tremendous negative influence on quality of life, both in terms of its motor disability and nonmotor disability [1]. Additionally, Parkinson’s disease is among the fastest growing neurological conditions in the world [2]. Taken together, Parkinson’s disease exerts an enormous global impact on the lives of millions of patients and their families, and to mounting costs for society. It is therefore time for action! [3].

The way forward can grossly be visualised as two parallel tracks (Fig. 1). Efforts that are part of the first track aim to further unravel the aetiology and pathophysiology underlying Parkinson’s disease, as a basis for development of new therapies that will slow down or even arrest disease progression. Such therapies should be given to those who are already clinically affected, and might eventually be used to postpone or even prevent manifestation of the first motor symptoms among those at high risk of developing Parkinson’s disease. We have discussed several promising developments in this field here in the Journal of Parkinson’s Disease. Examples of such developments described in our journal include improved fundamental insights in what is happening in the parkinsonian brain, a better understanding of the potential role played by the gut microbiome, and the repurposing of existing drugs such as exenatide or nilotinib as possible new disease-modifying agents [4– 7]. Encouraging as these developments may be, we realize that this road is paved with tremendous challenges. The reality is that many favourable preclinical results will be followed by failures in clinical trials, and that even positive outcomes in patients typically require many years before full clinical implementation is reached.

Fig.1

Schematic illustration of the two parallel tracks (a fundamental one and an applied one) that need to be followed simultaneously to create a better future for persons living with Parkinson’s disease.

Pending further successes in the first track focused on research into disease mechanisms and therapies that interfere with the underlying pathogenesis, it is also essential to invest into the other track, which aims to develop better care for the many patients who currently experience the impact of Parkinson’s disease (Fig. 1). Improved service models are urgently needed, to reduce disease complications, improve quality of life, and to reduce costs for society [8]. Given this great importance of optimal care, we are pleased to present a special issue of the Journal of Parkinson’s Disease that is focused entirely on care management issues. All reviews have a very pragmatic scope, aiming to offer practical advice to readers that you can hopefully apply in your clinical practice the next time you see a person living with Parkinson’s disease. This special volume deals not only with common and vexing issues such as sleep disturbances, visual disorders or orthostatic hypotension, but also addresses newer topics such as the importance of personalized care management. Of course, modern management means much more than just caring for our patients; we increasingly realise that optimal care can only be achieved by working closely together with patients and their families, in a process of co-creation and participatory care, with obviously different but equally important contributions by both professionals and patients. This is precisely why this special issue kicks off with a contribution by patient advocates John Andrejack and Soania Mathur, to reflect the “voice of the customer” as the ultimate stakeholder in our efforts to optimise the care for and with patients with Parkinson’s disease.