key: cord-0699731-jneokt3j
authors: Grimes, David; Antonini, Angelo; Ferreira, Joaquim J; Sanchez-Ferro, Álvaro; Lynch, Timothy; Rascol, Oliver; Růžička, Evžen; Eggers, Carsten; Mestre, Tiago A
title: Patient-centred management of Parkinson's disease
date: 2020-10-21
journal: Lancet Neurol
DOI: 10.1016/s1474-4422(20)30359-8
sha: 9a32d01132ee6cc06735927916ea54c636ec3089
doc_id: 699731
cord_uid: jneokt3j

nan

environ ments. The infra struc ture needed for training these professionals is sub stantial and highly trained health professionals could become quickly overwhelmed with patients.

To overcome the practical limitations of multispecialty care for Parkinson's disease, we propose a regional care network that starts by optimising existing allied health programmes and community resources (including pri mary care physicians) and allows for selfmanagement. We believe this approach would enable implementation of care integration in most health-care models and could be a cost-effective alternative with positive outcomes. We envision a toolkit to guide the application of these care principles to local care settings. Its development requires a multinational, multidisciplinary effort with healthcare teams, clinical researchers, health economists, and sociologists. Patientcentredness is paramount to fulfil this vision, and co-designed methodologies should be a frame work to develop a care model tai lored to patient needs at disease onset and beyond. 3, 4 The COVID-19 pandemic has prompted a change in care delivery with increased uptake of telemedicine and online care resources. It is fundamental to address the question of what the most beneficial and feasible care delivery model is and, consequently, if Parkinson's disease tertiary centres should remain the hub of care. The current scenario is an opportunity to test the hypothesis that a major component of Parkinson's disease care has shifted to the home and com munity and that any care model must be pragmatic and tailored to the patient's needs. Pragmatism is key in delivering chronic neurological care. DG its detection upon arrival in hospital, which also contributed to a relative low prevalence of hypotension in our study. The median ages seem to be commensurate between our study and the study by Spaite and colleagues; however, the patients enrolled in these two large datasets are very differ ent: patients with traumatic brain injury of all severities and all ages 1 were considered in our study, whereas patients with mild traumatic brain injury or those aged younger than 10 years were excluded from Spaite and colleagues' study. 3 A better comparison is the CENTER-TBI study in Europe, 5 for which the cohort had a median age of 50 years (IQR 30-66) and 1254 (28%) of 4509 patients were older than 65 years, compared with a median age of 48 years (33-61) and 17% of patients who were older than 65 years in our study in China. 1 We believe that comparative analysis between various clinical trials is truly meaningful when individual trial design and baseline characteristics are taken into consideration.

We are pleased that the geographical variation observed in our study raised the inter est of our European colleague. More analyses based on contemporary cohort data and previous studies will be of great value, and greater emphasis should be placed on current international collaborations and compara tive effectiveness studies, as they are more feasible and anticipated than ever in this field.

We declare no competing interests. 

The Personal View by Bloem and colleagues 1 on integrated and patientcentred management of Parkinson's dis ease proposes a health system organisa tion to address complex care in chronic neurological disorders, using Parkinson's disease as an example. The proposed hub-and-spoke model envisions the integration of health pro fes sionals based on a Parkinson's disease centre of excellence inte grated with community hospitals. We share the values put forward as pillars for a frame work change in the care of Parkinson's disease and other chronic neuro logical diseases but would like to offer addi ti onal insights for their wider dissemination and implementation. As mentioned by Bloem and colleagues, it is necessary to adapt any model of integrated health care to local circumstances. However, how the different components of the model might be implemented is unclear and, in our opinion, the most crucial barrier for the effective use of comprehensive care in Parkinson's disease management.

For example, Bloem and colleagues make Parkinson's disease specific train ing of allied health profes sionals a funda mental piece of the model. Although we agree with the need for training, this ideal scenario could be impractical in many health-care www.thelancet.com/neurology Vol 19 November 2020 originally designed in 2004 as a lowcost net work of physical therapists in the Netherlands. 3 It consists of a collection of regional communitybased networks of dedicated allied health profes sionals (physiother apists, occupational therapists, speechlanguage therapists, dietitians, and nurses) who are specifically trained on Parkinson's disease management. In this model, the personal case manager is a non-medical professional and there is one hub for the entire country (population of 17·28 million people, area of 41 543 km²). The connection between a patient with Parkinson's disease and their doctor is mediated by a caring nurse. By contrast, the Lombardy network was developed topdown. The regional health authority commissioned it in accordance with a national provision on chronic diseases. The model structure is based on data analysis done by the commission ing authority from statistics related to Parkinson's disease and health-care providers in Lombardy. In this model, the personal case manager is the patient's doctor and there are 12 hubs throughout the Lombardy region (population of 10·06 million, area of 23 844 km²).

Bloem and colleagues did not clearly identify objective measures to monitor efficacy and efficiency of network operations. The Lombardy network described in detail criteria for Parkinson's disease diagnosis and staging, referral of non-motor symptoms, management of deviceaided therapies, data collection, and quality assessing and governance. Similar outcome measures should be used to compare these two networks. To this end, the Dutch model could possibly adopt the objective measures used in Lombardy and allow comparisons of the two European experiences.

Financial sustainability was a concern in both models. Structured networks could reduce costs, improve timely access to treatment, enable earlier diagnosis, enhance patient

Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care

Developing and evaluating complex interventions: the new Medical Research Council guidelines

eCARE-PD, a digital health platform for patient empowerment and online health tracking: experiences with co-design. International Parkinson and Movement Society

Development of the integrated Parkisnon's care network (IPCN): using co-design to plan collaborative care for people with Parkinson's disease

JJF reports grants from GlaxoSmithKline, Grunenthal, Teva, and Fundação Merck Sharp Dome. AA reports consultancy and speaker fees from Union Chimique Belge (UCB)