Rationale and design to evaluate the PRIME Parkinson care model: a prospective observational evaluation of proactive, integrated and patient-centred Parkinson care in The Netherlands (PRIME-NL).

BACKGROUND: Culminating evidence shows that current care does not optimally meet the needs of persons with parkinsonism, their carers and healthcare professionals. Recently, a new model of care was developed to address the limitations of usual care: Proactive and Integrated Management and Empowerment in Parkinson's Disease (PRIME Parkinson). From 2021 onwards, PRIME Parkinson care will replace usual care in a well-defined region in The Netherlands. The utility of PRIME Parkinson care will be evaluated on a single primary endpoint (parkinsonism-related complications), which reflects the health of people with parkinsonism. Furthermore, several secondary endpoints will be measured for four dimensions: health, patient and carer experience, healthcare professional experience, and cost of healthcare. The reference will be usual care, which will be continued in other regions in The Netherlands. METHODS: This is a prospective observational study which will run from January 1, 2020 until December 31, 2023. Before the new model of care will replace the usual care in the PRIME Parkinson care region all baseline assessments will take place. Outcomes will be informed by two data sources. We will use healthcare claims-based data to evaluate the primary endpoint, and costs of healthcare, in all persons with parkinsonism receiving PRIME Parkinson care (estimated number: 2,000) and all persons with parkinsonism receiving usual care in the other parts of The Netherlands (estimated number: 48,000). We will also evaluate secondary endpoints by performing annual questionnaire-based assessments. These assessments will be administered to a subsample across both regions (estimated numbers: 1,200 persons with parkinsonism, 600 carers and 250 healthcare professionals). DISCUSSION: This prospective cohort study will evaluate the utility of a novel integrated model of care for persons with parkinsonism in The Netherlands. We anticipate that the results of this study will also provide insight for the delivery of care to persons with parkinsonism in other regions and may inform the design of a similar model for other chronic health conditions.

Proactive and Integrated Management and Empowerment in Parkinson's Disease protocol for a randomised controlled trial (PRIME-UK) to evaluate a new model of care.

BACKGROUND: People living with Parkinson's disease experience progressive motor and non-motor symptoms, which negatively impact on health-related quality of life and can lead to an increased risk of hospitalisation. It is increasingly recognised that the current care models are not suitable for the needs of people with parkinsonism whose care needs evolve and change as the disease progresses. This trial aims to evaluate whether a complex and innovative model of integrated care will increase an individual's ability to achieve their personal goals, have a positive impact on health and symptom burden and be more cost-effective when compared with usual care. METHODS: This is a single-centre, randomised controlled trial where people with parkinsonism and their informal caregivers are randomised into one of two groups: either PRIME Parkinson multi-component model of care or usual care. Adults ≥18 years with a diagnosis of parkinsonism, able to provide informed consent or the availability of a close friend or relative to act as a personal consultee if capacity to do so is absent and living in the trial geographical area are eligible. Up to three caregivers per patient can also take part, must be ≥18 years, provide informal, unpaid care and able to give informed consent. The primary outcome measure is goal attainment, as measured using the Bangor Goal Setting Interview. The duration of enrolment is 24 months. The total recruitment target is n=214, and the main analyses will be intention to treat. DISCUSSION: This trial tests whether a novel model of care improves health and disease-related metrics including goal attainment and decreases hospitalisations whilst being more cost-effective than the current usual care. Subject to successful implementation of this intervention within one centre, the PRIME Parkinson model of care could then be evaluated within a cluster-randomised trial at multiple centres.

Personalized care management for persons with Parkinson's disease: A telenursing solution.

Poor recognition and inadequate treatment of motor and non-motor symptoms negatively impact on the quality of life of persons with Parkinson's Disease (PD). Furthermore, failure to incorporate timely detection and management of symptoms increases the risk of partially avoidable complications. A promising approach to overcome these pitfalls is telenursing, which entails proactive care delivery by a PD Nurse Specialist (PDNS) through telephone contacts. We hypothesized that adding telenursing to usual care could fill a gap in currently available services, including offering patients easy accessibility to a nurse with specific expertise in PD. We explored this hypothesis by prospectively assessing the effects of a telenursing intervention on motor and non-motor symptoms in a patient with PD. During a threemonth intervention period which comprised 13 telephone contacts, the patient reported a remarkable reduction in number of falls, from 99 falls per three months to 3 falls per three months; and a reduction in non-motor symptoms. The main working mechanism was presumably rather indirect and mediated via alleviation of anxiety, achieved by the individually tailored information and problem-solving strategies provided by the PDNS. Our observations should encourage large-scale evaluations to assess the long-term effectiveness and cost-effectiveness of telenursing interventions in persons with PD.

Personalized Care Management for Persons with Parkinson's Disease.

There is a growing awareness that delivery of integrated and personalized care is necessary to meet the needs of persons living with Parkinson's disease. In other chronic diseases than Parkinson's disease, care management models have been deployed to deliver integrated and personalized care, yielding positive effects on patients' health outcomes, quality of life and health care utilization. However, care management models have been highly heterogeneous, as there is currently no clear operationalization of its core elements. In addition, most care management models are disease-specific and not tailored to the individual needs and preferences of a patient. In this viewpoint we present an integrated and personalized care management model for persons with Parkinson's disease costing of five core elements: (1) care coordination, (2) patient navigation, (3) information provision, (4) early detection of signs and symptoms through proactive monitoring and (5) process monitoring. Following the description of each core element, implications for implementing the model into practice are discussed. Finally, we provide clinical and methodological considerations on the evaluation of care management models.

The Impact of Sex and Gender on the Multidisciplinary Management of Care for Persons With Parkinson's Disease.

The impact of sex and gender on disease incidence, progression, and provision of care has gained increasing attention in many areas of medicine. Biological factors-sex-and sociocultural and behavioral factors-gender-greatly impact on health and disease. While sex can modulate disease progression and response to therapy, gender can influence patient-provider communication, non-pharmacological disease management, and need for assistance. Sex and gender issues are especially relevant in chronic progressive diseases, such as Parkinson's disease (PD), because affected patients require multidisciplinary care for prolonged periods of time. In this perspective paper, we draw from evidence in the field of PD and various other areas of medicine to address how sex and gender could impact PD care provision. We highlight examples for which differences have been reported and formulate research topics and considerations on how to optimize the multidisciplinary care of persons with PD.

Proactive and Integrated Management and Empowerment in Parkinson's Disease: Designing a New Model of Care.

Parkinson's disease is the second most common neurodegenerative condition after Alzheimer's disease. The number of patients will rise dramatically due to ageing of the population and possibly also due to environmental issues. It is widely recognised that the current models of care for people with Parkinson's disease or a form of atypical parkinsonism lack continuity, are reactive to problems rather than proactive, and do not adequately support individuals to self-manage. Integrated models of care have been developed for other chronic conditions, with a range of positive effects. A multidisciplinary team of professionals in the United Kingdom and the Netherlands, all with a long history of caring for patients with movement disorders, used knowledge of deficiencies with the current model of care, an understanding of integrated care in chronic disease and the process of logic modelling, to develop a novel approach to the care of patients with Parkinson's disease. We propose a new model, termed PRIME Parkinson (Proactive and Integrated Management and Empowerment in Parkinson's Disease), which is designed to manage problems proactively, deliver integrated, multidisciplinary care, and empower patients and their carers. It has five main components: (1) personalised care management, (2) education and empowerment of patients and carers, (3) empowerment of healthcare professionals, (4) a population health approach, and (5) support of the previous four components by patient- and professional-friendly technology. Having mapped the processes required for the success of this initiative, there is now a requirement to assess its effect on health-related and quality of life outcomes as well as determining its cost-effectiveness. In the next phase of the project, we will implement PRIME Parkinson in selected areas of the United Kingdom and the Netherlands.