Chronic neurological diseases are now the leading source of disability globally. Yet, our healthcare systems are not designed optimally to meet the needs of the many chronic neurological patients. Care is fragmented, with poor interdisciplinary collaboration and lack of timely access to services and therapies. Furthermore, care is typically reactive instead of taking a more proactive approach, while complex problems are managed inadequately due to lack of disease-specific expertise and insufficient use of non-pharmacological interventions. Treatment plans tend to focus on the disease rather than the individual living with it, and patients are insufficiently involved in clinical decision-making. In our new publication in The Lancet Neurology, we have illustrated a new integrated care concept with a patient-centred perspective that includes evidence-based solutions to tackle the limitations of current healthcare delivery for people with chronic neurological conditions. In our paper, we illustrate this by using Parkinson’s disease as a model condition for other types of movement disorders as well as other chronic neurological conditions, for various reasons: Parkinson’s disease may be the fastest growing neurological condition worldwide, the phenotype is characterized by a complex array of both motor and nonmotor features, and chronic care involves a wide range of professional disciplines that operate in all possible layers of healthcare.
The model that we introduced is tailored around eight specific solutions: First, to monitor patients and deliver care within or close to the patient’s own home environment, whenever possible. Second, to educate patients, and to support them in self-management, which relieves anxiety and alleviates pressure on the medical system. Third, to deliver proactive instead of reactive care, thereby preventing disease burden and avoiding escalation to more expensive care (including avoidance of unplanned admissions). Fourth, to support proactive care by remote monitoring using e.g. sensors and e-diaries, allowing for timely detection of medical problems before they derail. Fifth, to deliver care according to each patient’s unique sociodemographic, disease-specific and genetic factors, considered in tandem with their personal objectives and goals, following personalised “precision” approaches. Sixth, to optimize timely access to both generalists and specialists in the management of persons with PD. Seventh, to facilitate that patients can easily contact a single point of access (a personal care manager) who can directly answer simple questions, refer patients to appropriate colleagues, and coordinate the multidisciplinary team advice. Eighth, to seamlessly connect the different layers of healthcare and bundle all solutions into an integrated network, across both professional disciplines and different healthcare settings. We anticipate that this integrated care model will improve the quality of lives of patients and create an attractive working environment for professionals, whilst being affordable for future generations.
We agree that the proposed new model of integrated care holds great promise to revolutionize our approach to the chronic management of patients with Parkinson’s disease, as well as those with different movement disorders or other neurological conditions. The model may be easiest to implement in well-developed and densely populated countries, but we also see definite opportunities to implement important elements of the new integrated care model in developing countries. The introduction of telemedicine (such as videoconferencing to diagnose and support patients remotely) is a prime example of this. The next step is to take this new model to the test, which is currently taking place as part of a large controlled study in the Netherlands (the PRIME project: PRoactive and Integrated Management and Empowerment of people with Parkinson’s disease). This experiment will yield hands-on experience with the new model in a living laboratory, and as such provide important “lessons learned” for a wider implementation elsewhere in the world.
Bloem BR, Henderson EJ, Dorsey ER, Okun MS, Okubadejo N, Chan P, Andrejack J, Darweesh SKL, Munneke M. Integrated and patient-centred management of Parkinson’s disease: a network model for reshaping chronic neurological care. Lancet Neurol. 2020 Jul;19(7):623-634. doi: 10.1016/S1474-4422(20)30064-8. Epub 2020 May 25. PMID: 32464101.