Recognizing the diverse and changing needs of the growing Parkinson’s population
Parkinson’s disease (PD) affects more than 6 million people worldwide*. This number has more than doubled over the past 25 years and projections predict a similar increase over the next 30, making it the fastest growing neurological condition. People with Parkinson’s (PwP) are a high needs population; they have reduced quality of life compared to aged-matched controls, are more likely to be admitted to hospital with longer stays and have more than double the healthcare associated costs. This burden extends to family and friends who commonly act as informal caregivers. As the prevalence and burden of PD continues to increase, so does the need for effective healthcare services to deliver care to PwP.

PD has some characteristics which make providing healthcare challenging. Each PwP has a unique experience in terms of symptom burden, response to treatment and prognosis, including time to important progression points such as postural instability, falls and dementia. People’s needs are not static and often change in a non-linear way throughout the disease course. Given Parkinson’s is primarily a disease of older people, there is added clinical complexity from multimorbidity, frailty and polypharmacy. The Parkinson’s specialist team also care for people with other conditions under the umbrella of parkinsonism, which have a different symptom burden, a more accelerated course and a poorer prognosis. The evidence base for multi-disciplinary team (MDT) led care is growing and we need care models that can successful implement this. The care we provide to PwP and related conditions needs to be able to respond to the diverse and changing needs of this growing population.

Issues with current care
There is a growing evidence base from mixed methods research and expert opinion that current PD care is inadequate. Despite the recognized heterogeneity within the PD population, care often takes a ‘one-size fits all’ approach. Services provide similar input to those with a recent diagnosis and those with complex disease with cognitive impairment, hallucinations and falls. There appears to be a lack of flexibility in the service to be responsive to moments of increased need and to avoid hospital admissions. Moreover, the management of PD is viewed in isolation, often overlooking the fact that PwP have a higher number of co-morbidities and prevalence of polypharmacy. Care is also often reactive to issues - PwP are only referred to therapists who can provide falls prevention intervention once they have started falling. PwP report finding care to be fragmented and lacking coordination and have difficulty getting timely access to specialist support. They urgently want a single point of access to help and support.

The quest for a solution
In recognition of the challenges in providing care to PwP and in an aim to overcome current shortcomings, our research group (The Ageing and Movement Research Group) at the University of Bristol have designed a new model of care in collaboration with a team at Radboud Medical Centre in the Netherlands. Although the interventions differ slightly between countries, the newly designed care model, PRIME-Parkinson, aims to provide PRoactive, Integrated Management and Empowerment to PwP. PRIME care aims to use case management and measurement of individualised risk of complications to guide a personalised approach to care. It also aims to take an MDT-led holistic approach to care, be responsive to changing needs and provide timely access to specialist advice through a single point of access phone line. It aims to empower PwP and their caregivers through individualised patient education, signposting and personalised care plans.

Does PRIME care improve outcomes?
Although designed to overcome shortcomings in current care, there remains equipoise as to whether or not the PRIME model of care can improve outcomes for PwP. To answer this question, we are running a randomized controlled trial (RCT) based at Royal United Hospitals, Bath in the United Kingdom. We have enrolled 214 people with parkinsonism to receive either ‘usual care’ or ‘PRIME care plus usual care’ for 24 months. Our aim is to determine if PRIME care can improve the primary outcome of personal goal attainment compared with ‘usual care’. Our secondary outcomes include hospital admissions and measures across multiple domains of health-related quality of life and symptom burden. We will also look at whether PRIME care is cost effective in an economic evaluation.

How, why, for whom and under what conditions?
Beyond the binary question as to whether or not PRIME care improves outcomes, we seek to answer the questions of how, why, for whom and under what conditions PRIME care may bring about change through an embedded ‘process evaluation’. We will collect information on implementation of the intervention (i.e. what was actually delivered). Having purposively recruited those from underserved groups, we will explore whether or not the intervention is able to reach these groups of individuals and whether outcomes differ between groups. We will also collect data on process measures, which are intermediate outcomes that help us to understand through what mechanisms PRIME care does or does not bring about change. We will also capture contextual factors such as the existing infrastructure in the local PD service. Aside from finding out whether or not PRIME care works, we hope to understand more about how we should be delivering care to improve outcomes for PwP.

Read more about how the intervention was designed here:
Proactive and Integrated Management and Empowerment in Parkinson's Disease: Designing a New Model of Care - PubMed (nih.gov)

Read more about the design of the trial here:
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 - PubMed (nih.gov)

Follow our progress here:
PRIME Parkinson UK – Proactive and Integrated Management and Empowerment in Parkinson’s Disease (bristol.ac.uk)

Twitter: @PdPrime

*WPC reports this number to be higher, closer to 10 million people living with PD globally as per Parkinson’s Europe and Parkinson’s Foundation.  WHO reported well over 8.5 million people with PD were living on the planet as per 2019.

Dr Katie Lloyd MBChB MRCP (UK) BSc Clinical Research Fellow at the Bristol Medical School, UK, presented her work as part of a guided poster tour at the WPC 2023 in Barcelona.
Twitter: @katieelloyd 

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®