Patient-centred management of Parkinson's disease
Authors: David Grimes, Angelo Antonini, Joaquim J Ferreira, Álvaro Sanchez-Ferro, Timothy Lynch, Oliver Rascol, Evžen Růžička, Carsten Eggers, Tiago A Mestre
Journal: The Lancet Neurology (2020)

The Personal View by Bloem and colleagues1Bloem BR Henderson EJ Dorsey ER et al.Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care.Lancet Neurol. 2020; 19: 623-634Summary Full Text Full Text PDF PubMed Scopus (114) Google Scholar on integrated and patient-centred management of Parkinson's disease proposes a health system organisation 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 professionals based on a Parkinson's disease centre of excellence integrated with community hospitals. We share the values put forward as pillars for a framework change in the care of Parkinson's disease and other chronic neurological diseases but would like to offer additional 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 training of allied health professionals a fundamental piece of the model. Although we agree with the need for training, this ideal scenario could be impractical in many health-care environments. The infrastructure needed for training these professionals is substantial 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 primary care physicians) and allows for self-management. 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 health-care teams, clinical researchers, health economists, and sociologists. Patient-centredness is paramount to fulfil this vision, and co-designed methodologies should be a framework to develop a care model tailored to patient needs at disease onset and beyond.3Mestre T, Grosjean S, Bonneville L, Grimes D, Bate E, Lê M. eCARE-PD, a digital health platform for patient empowerment and online health tracking: experiences with co-design. International Parkinson and Movement Society 2019 International Congress; Nice, France; Sept 22–26, 2019 (abstr 2116).Google Scholar, 4Kessler D Hauteclocque J Grimes D Mestre T Côtéd D Liddy C Development of the integrated Parkisnon's care network (IPCN): using co-design to plan collaborative care for people with Parkinson's disease.Qual Life Res. 2019; 28: 1355-1364Crossref PubMed Scopus (32) Google Scholar 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 community and that any care model must be pragmatic and tailored to the patient's needs. Pragmatism is key in delivering chronic neurological care. DG reports consultation fees from Valeo Pharma, Sandoz, Department of Justice Canada Government of Canada Clinical trials, CIHR, Biotie Therapies, Genzyme Corporation, and Sanofi. DG reports grants from the Canadian Institute of Health Research, Parkinson Canada, Brain Canada, PSI Foundation, Parkinson Research Consortium, EU Joint Programme–Neurodegenerative Disease Research, and University of Ottawa Brain and Mind Research Institute (UOBMRI). JJF owns stocks in and reports consultancy fees from Ipsen, GlaxoSmithKline, Novartis, Teva, Lundbeck, Solvay, Abbott, BIAL, Merck–Serono and Merz. JJF reports grants from GlaxoSmithKline, Grunenthal, Teva, and Fundação Merck Sharp Dome. AA reports consultancy and speaker fees from Union Chimique Belge (UCB), Boehringer Ingelheim, AbbVie, Zambon, Bial, Ever Pharma, Neuroderm, Therevance, Biogen. AA reports research grants from Chiesi Pharmaceuticals, Lundbeck, Horizon, and the Italian Ministry of Education. AA serves as consultant for Boehringer–Ingelheim for legal cases on pathological gambling.ÁS-F owns stocks in Leuko Labs and Leuko Imaging System and reports speaker fees froms Abbvie, UCB, Novartis. ÁS-F reports grants from EU Joint Programme Neurodegenerative Disease Research (JPND), and European Institute of Innovation and Technology Health, and royalties from the Massachusetts Institute of Technology.TL is on the advisory boards for An2H, receives speaker fees from UCB, and reports grants from the Michael J Fox Foundation, Health Research Board Ireland, and JPND. ER reports consultancy fees from Abbvie, Acadia, and Axon, and grants from Horizon 2020, JPND, Michael J Fox Foundation, Czech Health Research Council, and Grant Agency of the Czech Republic. OR is on the advisory board for AbbVie, Adamas, Acorda, Addex, AlzProtect, Apopharma, Astrazeneca, Axovant, Bial, Biogen, Britannia, Buckwang, Cerespir, Clevexel, Denali, INC Reasearch, Lundbeck, Lupin, Merck, MundiPharma, Neuratris, Neuroderm, Novartis, Ono Pharma, Osmotica, Parexel, Pfizer, Prexton Therapeutics, Quintiles, Roche, Sanofi, Servier, Sunovion, Théranexus, Takeda, Teva, UCB, Vectura, Watermark Research, XenoPort, and Zambon. OR reports grants from Agence Nationale de la Recherche, CHU de Toulouse, France-Parkinson, INSERM-DHOS Recherche Clinique Translationnelle, Michael J Fox Foundation, Programme Hospitalier de Recherche Clinique, European Commission, Cure Parkinson UK. OR has received a grant to participate in a symposium and contribute to the review of an article International Parkinson Disease and Movement Disorders Society. CE receives consultancy fees from AbbVie and Philyra, and speaker fees from AbbVie, Daiichi Sankyo, Bayer Vital, and Philyra. CE reports grants from Deutsche Parkinson Vereinigung, German Ministry for Education and Science, Horizon 2020, German Research Society, and German Parkinson Society. TM received speaker fees from AbbVie, and the International Parkinson and Movement Disorder Society. TM receives consultancy fees from CHDI Foundation, Sunovion, Valeo Pharma, and is part of the advisory board for AbbVie, Biogen, Roche, Medtronic, and received grants from EU Joint Programme–Neurodegenerative Disease Research, UOBMRI, Ontario Research Fund, Canadian Institute of Health Research, Michael J Fox Foundation, Parkinson Canada, Parkinson Disease Foundation/Parkinson Study Group, LesLois Foundation, Physicians Service Incorporated Foundation, and Parkinson Research Consortium. Patient-centred management of Parkinson's diseaseWe read with interest the Personal View by Bastiaan Bloem and colleagues on integrated and patient-centred management of Parkinson's disease.1 We have designed the structure and operation of the Parkinson's disease network in Lombardy, Italy,2 and wish to compare the two models. Both networks consider a hub-and-spoke model of distributed health-care services and are designed to be implemented in high-income European regions with prevalently public health-care systems. However, there are some considerable differences between the two models. Full-Text PDF Patient-centred management of Parkinson's disease – Authors' replyWe 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. Full-Text PDF Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological careChronic neurological diseases are the leading cause of disability globally. Yet, our health-care systems are not designed to meet the needs of many patients with chronic neurological conditions. Care is fragmented with poor interdisciplinary collaboration and lack of timely access to services and therapies. Furthermore, care is typically reactive, and complex problems are managed inadequately because of a scarcity of disease-specific expertise and insufficient use of non-pharmacological interventions. Full-Text PDF