Patient-centred management of Parkinson's disease – Authors' reply

We thank our colleagues for their comments on our novel network model for reshaping care for people with Parkinson's disease or other chronic neurological conditions.¹ David Grimes and colleagues discuss the feasibility of implementing Parkinson's disease-specific training of community-based allied health professionals across different health-care settings. Their proposed approach is compatible with our model and is a feasible implementation route to ascertain adequate care delivery by allied health professionals. An important part of the integrated network model is to establish links between Parkinson's disease specialists and generalists working in the community.¹ We agree that using local resources and adapting the specific characteristics of the network, such as number of trained professionals, accordingly is essential. We were encouraged to note that specialised allied health-care programmes, which were originally developed in the Netherlands, could be transferred successfully to a different health-care setting in another country with modifications dictated by the regional availability of resources.²

Alberto Albanese and Daniela Calandrella draw attention to the Lombardy network, which is a promising illustration of several key components of our proposed model: to deliver integrated care, to ascertain continuity of care, and to enable access to appropriate care.¹ However, they might have misinterpreted some other components of our model. The role of a personal care manager in the model is fulfilled by a medical professional (eg, a Parkinson's disease nurse).3, 4 The specific characteristics of the network, including the number of hubs, depend on the prevalence of specific diseases and the travel distances in a country. For example, the approximately 50 000 people with Parkinson's disease in the Netherlands are served not by a single hub but by at least six of these hubs. These hubs are centres of expertise where knowledge should help to remotely support local health-care professionals, allowing them to deliver optimal care nearby the patient. Treatment should be administered as close to home as possible and visits to hubs should remain an exception—eg, for those with a difficult diagnostic trajectory or those in need of complex advanced treatments.

Our colleagues inadvertently create the impression that allied health training is the sole, or most important, part of the integrated care model, whereas it is only one component of a much broader and multifaceted approach that also includes self-management, a personal care manager adopting a proactive approach, and access to specialised services in a remotely situated hub when needed. In line with the recommendation of Grimes and colleagues, an extreme focus on patient participation is at the core of every element of this approach.¹

We agree with Albanese and Calandrella that we should reach international agreement about relevant outcomes to evaluate the cost-effectiveness of different integrated care models, allowing for benchmarking and enabling a crucial process of learning from the differences. We also agree with Grimes and colleagues that the COVID-19 pandemic has created unique opportunities to rapidly implement key elements of the integrated care model. In many ways, the ongoing pandemic already acts as a catalyst to narrow existing gaps between community-based generalists and disease-specialists through virtual peer-to-peer consultations.⁵ The now widely deployed telemedicine approaches will improve the collaboration between tertiary expert centres and general neurologists working in community hospitals, enabling harmonisation of high-level care for people with Parkinson's disease.