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2020 Integrated Model PRIME-Pk

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2020 Integrated Model PRIME-Pk

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Hindawi

Parkinson’s Disease
Volume 2020, Article ID 8673087, 11 pages
https://doi.org/10.1155/2020/8673087

Research Article
Proactive and Integrated Management and Empowerment in
Parkinson’s Disease: Designing a New Model of Care

Emma Tenison ,1 Agnes Smink,2 Sabi Redwood,1,3 Sirwan Darweesh ,2 Hazel Cottle,4
Angelika van Halteren,2 Pieter van den Haak,2 Ruth Hamlin,4 Jan Ypinga,2
Bastiaan R. Bloem,2 Yoav Ben-Shlomo,1 Marten Munneke,2 and Emily Henderson 1,4
1
Department of Population Health Sciences, Bristol Medical School, University of Bristol, Bristol BS8 1NU, UK
2
Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology,
Center of Expertise for Parkinson & Movement Disorders, Nijmegen, Netherlands
3
National Institute for Health Research Applied Research Collaboration (NIHR ARC West), 9th Floor, Whitefriars, Lewins Mead,
Bristol BS1 2NT, UK
4
Older People’s Unit, Royal United Hospitals Bath NHS Foundation Trust, Combe Park, Bath, UK

Correspondence should be addressed to Emma Tenison; [email protected]

Received 8 November 2019; Accepted 14 February 2020; Published 30 March 2020

Guest Editor: Mari C. Portillo

Copyright © 2020 Emma Tenison et al. This is an open access article distributed under the Creative Commons Attribution License,
which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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 re-
quirement 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.

1. Introduction doubled from 2.5 million individuals in 1990 to 6.1 million


individuals in 2016 [1]. Around 0.3% of the population in
Parkinson’s disease (PD) is the second most common industrialized countries have PD, rising to 1% in those aged
neurodegenerative disease after Alzheimer’s disease. There is over 60 years [2]. Neurological diseases, including PD, are
also a group of conditions that may initially resemble PD and now the leading cause of disability globally [3]; PD reduces
that are collectively referred to as atypical parkinsonism; this life expectancy [4], negatively impacts on health-related
includes rarer conditions such as multiple system atrophy, quality of life [5], and is associated with an increased fre-
progressive supranuclear palsy, and Lewy body dementia. quency of hospital attendance at higher-than-average costs
The global prevalence is estimated to have more than [6].
2 Parkinson’s Disease

There is a growing recognition that current models of disease status, hospitalisation rates, and adherence to
care are not optimised to care for individuals with PD or guidelines, when applied to a range of different conditions,
atypical parkinsonism (in the remainder of this paper, we including diabetes, heart failure, chronic obstructive pul-
will only refer to models for persons with PD, noting that monary disease, rheumatoid arthritis, and chronic diseases
many of the proposed solutions will likely also apply to in general [15]. It can be challenging to deliver effective care
persons with a form of atypical parkinsonism). The het- to people with PD who are often older [16] and also given the
erogeneity of PD necessitates a highly personalised ap- complex and heterogenous nature of this neurological
proach whereby treatment is tailored based on patients’ condition, which encompasses symptoms that span multiple
clinical phenotype and specific symptoms [7]. Current care medical specialisms and multiple morbidities. There is,
models are plagued by several drawbacks: there is often a therefore, potential to improve current care for persons with
lack of continuity of care; issues are detected late and PD by incorporating the theoretical approach of the CCM
managed reactively; care is often not person-centred; and which emphasises the need to support patients to self-
approaches may not adequately involve patients in deci- manage; improve healthcare professionals’ expertise, and
sions around their care [8]. Patients with PD, their relatives utilize clinical information systems [17, 18]. A previous
and healthcare professionals have previously identified research project in Canada has used the “Expanded CCM,”
several unmet needs amongst this patient group, including which combines the framework of the CCM with principles
a need for more support to self-manage; a more collabo- of population health promotion, to develop the Chronic
rative approach between the multidisciplinary team and a Care Model for Neurological Conditions (CCM-NC) [19].
single point of access where questions can be answered and However, as far as we are aware, there has only been one
support is given to find a way in the complex healthcare previous application of the CCM to the population of in-
system [9]. dividuals with PD, implemented amongst US Veterans [20]
Given the complex nature of PD, allied health in- and none within a European setting.
volvement from appropriately skilled professionals, is par- The aim of this paper is to describe the development
amount. Questionnaire surveys among allied health phase of a project setting out to design a new integrated
professionals, including physiotherapists, occupational model of care, termed “PRIME-Parkinson” (Proactive and
therapists, and speech-language therapists who had treated Integrated Management and Empowerment in Parkinson’s
patients with PD within the last year, revealed that over 75% Disease), for people with PD. We have chosen to also include
reported a lack of PD-specific expertise [10]. In the same patients with atypical parkinsonian syndromes, rather than
study, surveys of patients with PD showed that many of restricting our model to patients with idiopathic PD because
those experiencing problems, which would potentially of the many shared healthcare needs of these patient groups,
benefit from therapy input, were not receiving any relevant and also because we acknowledge that there is often diag-
therapy [10]. Suboptimal care appears more common for nostic uncertainty, particularly in the early phases of the
patients who are older, have worse cognition, and have disease [21]. Within the context of this study, PD can,
mobility problems [11]. This highlights the need to improve therefore, be assumed to include all forms of Parkinsonism,
awareness of and referral to allied health professionals and to unless otherwise specified.
ensure access to those with specialist expertise.
A further angle to improving care seeks to empower
patients and their carers. There is an increasing awareness 2. Methods
that patients who have the knowledge, skills, and confidence
to look after their health and feel empowered to do so have In order to develop our model, we first considered the goals
better health outcomes, including being more likely to adopt of healthcare improvement, secondly the deficiencies in
healthy behaviours and attend available screening pro- current PD care, and then used the process of logic mod-
grammes, leading to improved mood and reduced rates of elling to design our intervention. These stages are described
hospitalisation [12]. Amongst a group of patients with PD in further detail below.
who completed the Patient Activation Measure, 42% scored
as either “disengaged and overwhelmed” or “becoming
aware but still struggling” [13], suggesting there is much 2.1. Aims of Healthcare Improvement. The “Triple Aim”
scope to improve involvement and empowerment for people describes the three overarching goals which should be
with PD. pursued in order to achieve improvement in healthcare
A framework on which to base an innovative model of systems: a desire to improve population health, improve the
care was sought in order to gain an understanding of suc- experience of care, whilst reducing the per capita cost of
cessful approaches that have been implemented and tested in healthcare [22]. Acknowledging the risks of work-related
other disease areas. Developed in the 1990s, the Chronic stress and burnout, these aims were expanded by Bod-
Care Model (CCM) was an approach which was designed to enheimer and Sinsky to include the goal of improving the
improve the care of people with chronic conditions and work-life of those who deliver care, thus creating a qua-
change their care from being reactive to acute events to druple aim [23]. It was agreed that the new model of care
planned and proactive [14]. should aim to reach/achieve all four aspirations described in
Since its development, the philosophy of the CCM had the “quadruple aim,” acknowledging that the model would
positive effects on outcomes such as quality of life, functional need to be at least cost neutral, even if not cost saving.
Parkinson’s Disease 3

2.2. Identifying Issues with Current Care. The process begun with movement disorders, including neurologists and ger-
with a face-to-face meeting to discuss the findings of recent iatricians, alongside therapy, nursing colleagues, and
qualitative work exploring the unmet needs of patients with methodologists, from both a team in the United Kingdom
PD [9], alongside personal experiences of delivering care to (UK) (Royal United Hospital, Bath) and a team in the
this group, in order to identify key issues with the current Netherlands (Radboud University Medical Centre, Nijme-
model of care. These were collated into a list of six main gen), worked collaboratively to design a novel and integrated
issues with current care (“the problems”) and, for each one, model of care for patients with PD, including those with PD,
an accompanying statement was written to describe the atypical Parkinsonian syndromes and those with cognitive
collective vision for what would constitute success in this impairment. The decision to include patients with all forms
area (“the challenge”) (Table 1). of Parkinsonism, with the exception of drug-induced Par-
kinsonism, was taken with the aim of making this care model
as generalizable as possible to the day-to-day clinical practice
2.3. Rationale for Logic Model Development. We used
of healthcare professionals in the field of movement dis-
knowledge of unmet needs of patients with PD combined
orders. Likewise, this model is intended to be applicable to
with knowledge of the CCM, and its application to other
patients with PD, regardless of their age or stage of disease,
chronic diseases, to design a model of care for PD. No
acknowledging that younger patients are likely to have
specific author guidelines were used for the development
different needs to those who are older or have additional
phase. In order to graphically represent the components of
frailty or comorbidities.
the intervention, together with the theory around how each
Having agreed upon the issues with current care, we used
component would be expected to elicit change in outcomes,
the structure shown in Figure 1 to define the logic model for
the process of logic modelling was used. Logic models enable
each of the six problems shown in Table 1. This was an
us to consider the causal relationships between components
iterative process which entailed a subgroup of individuals,
of an intervention as well as the barriers and facilitators
who had been involved in the project conception individ-
which may influence its success, and it enables us to build in
ually mapping out potential strategies for all six problems.
methods of process evaluation to allow us to explain un-
These solutions were then compared and refined over a
expected outcomes of a complex intervention [24, 25]. Logic
series of teleconferences, in order to achieve a unified logic
models have been used in the development of a range of
model. Figure 2 shows a simplified version of the logic model
health promotion strategies including interventions to
which was developed for one of the six problems: the late
prevent childhood obesity [26], to prevent and control HIV
detection and reactive management of issues that arise in
[27], and to integrate mental health into management of
people with PD.
chronic disease [28].
Having carefully mapped out the key strategies which
Knowledge of the CCM indicated that multiple com-
would be expected to impact on the problems with current
ponents would need to be incorporated in order to address
care, we considered the resources required to implement
all the issues identified with current PD care. Having
these changes. This led to the categorization of the strategies
multiple components is one feature of a “complex inter-
and activities into the five main components of our proposed
vention” [29], as defined by the Medical Research Council, in
model. The detailed logic model was presented back to the
guidance which was updated last year [30]. It is acknowl-
whole group at a face-to-face meeting four months after the
edged that evaluation of complex interventions can be
process mapping had begun, and following further refine-
challenging [31].
ment, consensus was reached on the final logic model. We
By clearly defining our intervention within the frame-
describe the main elements of our model and its overall
work of a logic model, it is possible to build in compre-
philosophy below.
hensive methods of process evaluation, alongside the
evaluation of the intervention’s effectiveness [24, 32]. This
approach makes it possible to determine which elements of a 3. Results
model do or do not work, draw conclusions about how an
We have designed a novel model of care for PD that brings
intervention might translate to another context, and in the
together components from other chronic diseases which
case of overall ineffectiveness, establish if this is due to the
comprises
intervention itself or simply the way in which it was
implemented [24]. We believe we have used a hybrid ap- (1) Personalised care management
proach to intervention development consistent with what (2) Education and empowerment of patients and carers
O’Caithan and colleagues refer to as the “theory and evi-
(3) Empowerment of healthcare professionals
dence-based” approach so that interventions are based on
combining published research evidence and formal theories (4) A population health approach
(e.g., organisational theories) and “target population-cen- (5) Patient- and professional-friendly technology
tred” so that interventions are based on the views and actions
The means by which these components are delivered will
of the people who will use the intervention [33].
need to be tailored according to the country and region of
care delivery. However, we propose several key elements
2.4. Approach to Logic Model Development. A group of which, together, form the basis of an integrated model of
healthcare specialists with expertise in the care of patients care for PD described in further detail below. Figure S1
4 Parkinson’s Disease

Table 1: Problems with current care model and challenges to be addressed by an integrated model of care.
Problems with current care The challenge is to:
Lack of multidisciplinary collaboration and continuity of care Deliver integrated care and continuity of care
Issues detected late and managed reactively Manage issues early and proactively
Difficult to access healthcare professionals with appropriate expertise in a timely Facilitate access to specialised healthcare
fashion professionals
Lack of empowerment and involvement for patients and carers Educate and empower patients and carers
Care not managed close to home Organise care close to home
“One size fits all” treatment and focus mostly on motor symptoms Deliver personalised care and “precision” medicine

shows a summary version of the full logic model, containing realistic and achievable goals, together with an agreed
these elements. The description of the components of the action plan to address their goal; this information can be
PRIME-Parkinson model is for illustrative purposes; we aim documented in the care plan and shared with the multi-
to publish comprehensive standard operating procedures as disciplinary team who can periodically enter updates and
these are developed. review whether the goals have been achieved and, if not,
what further assistance could help with this. This collab-
orative sharing of information amongst the team enables
3.1. Personalized Care Management. A central component of the Parkinson’s nurse to monitor progress on the action
the model is to arrange adequate personalized care man- plan and proactively intervene if required.
agement for every patient. Care management is the col- Patients with PD travel along their “journey” as the
laborative approach to organise multidisciplinary care for, disease progresses, and their needs change with increasing
and in close collaboration with, the patient and his near ones motor and nonmotor symptom burden. Personalised care
[34]. In the literature, care management and case man- will be ensured by accounting for PD severity and impact,
agement are used interchangeably. Case management, especially their risk of acute deterioration and hospital
however, is focused mainly on supporting patients to nav- admission which will allow the Parkinson’s nurse to adjust
igate and organise their care, whereas care management their approach accordingly and proactively target those in
refers to a broader concept [35]. It includes, alongside the the highest risk group. The aim is to respond to the earliest
direct support of patients, the integration of care among sign of deterioration in the patient’s condition, ideally before
health professionals. In many cases, it is envisaged that a they have the need to present to acute services and to in-
Parkinson’s nurse will have a central role in care stigate timely measures to stabilise the clinical and/or social
management. situation. In situations in which acute admission is neces-
The Parkinson’s nurse facilitates collaboration between sary, the Parkinson’s nurse would be informed, enabling
all healthcare professionals involved in a patient’s care, them to support the inpatient team to achieve continuity of
supports patients to self-monitor and self-manage, pro- care and aim to minimise the length of stay.
vides information to patients and carers, and ensures that
they know how to access the right help at the right time. A
“single point of access” will be available for patients with 3.2. Education and Empowerment of Patients and Carers.
PD, as well as supporting anyone else who may have Patients and their carers will be supported to access relevant
concerns or questions, such as carers, the general practi- information in a variety of formats, including written and
tioner, community teams, and secondary care; the indi- electronic resources, group education, and peer support
vidual who takes the call can triage the enquiry towards the (both one-to-one and group support).
appropriate multidisciplinary team member, with the as- Given the large amount of information available on a
sistance of the Parkinson’s nurse as required. The im- national level, for example, as provided by Parkinson’s UK
portance of specialist nurses in caring for people with PD [37], the goal will be to deliver personalised education by
was acknowledged over 20 years ago in the UK, and they are ensuring that patients are directed towards the most relevant
recognized to fulfil several different roles, which comple- information for them, based on their disease stage, priorities,
ment those of other multidisciplinary team members [36]. health skills, and symptom burden and support them in both
These include providing practical and emotional support to access, comprehension and relevance to their personal
patients and their carers; supporting patient education; circumstances. The specific needs of carers will be addressed
coordination of care and acting as a link between the by offering opportunities for carers to share experiences,
patient, primary, and secondary care; and lifestyle advice access information about financial and practical support and
and goal-setting [36]. learn how to look after their own wellbeing.
The Parkinson’s nurse adopts a person-centred ap- Education will focus on common themes such as
proach by formulating a personalized care plan; this managing medication, staying healthy, self-management,
process allows the Parkinson’s nurse to establish what and advance care planning, as well as targeting certain
matters most to each patient and understand their indi- disease phases/stages (early diagnosis, complex disease
vidual needs and preferences, including for what their phase). This will not just ensure understanding, in order to
treatment is delivered. The Parkinson’s nurse ascertains the promote patient participation in decision-making, but also
patient’s goals for treatment and assists them in setting take a pragmatic approach on what actions patients might
Parkinson’s Disease 5

Intervention

Outcomes
Problem Strategy Activities Outputs (short and
long term)

Context
Hypotheses, barriers, and facilitators
Figure 1: The logic model structure used to design the intervention.

Activities Outputs Outcomes Outcomes


Problem Strategies
(short term) (long term)

Quadruple aim
PD nurse identifies and  number of
1 target patients at highest contacts with PD
Complications
Personalised care risk of complications nurse
detected at an
management
Triage from a single point of Attendance at earlier point Improved patient
access (SPA) and signpost educational and carer
Reduced experience
sessions
2 Educational modules frequency of
Education & e.g. staying healthy, self- Adherence to complications and
empowerment of management, when/how protocols crisis admissions
Issues Improved
detected patients/carers to seek help if concerned Patients and carers population health
Team members
too late feel empowered to
are empowered to
and 3 Evidence-based protocols self-manage, self-
intervene at
managed Empowerment of for common issues monitor and seek Improved work-life
earliest sign of
reactively healthcare help when needed of those delivering
deterioration
professionals Skills to support patients to healthcare
PD nurses and
self-manage Frequency of
team members
communication
Communication platform to feel equipped to
between the team Reduced per capita
4 coordinate care contribute to a
Patient and Complete, up-to- care management cost of healthcare
professional- Electronic “dashboard”: approach
date information
friendly displaying patient “risk
on dashboard
technology score” and summary of
multidisciplinary team input

Figure 2: The logic model structure was applied to one of the six “problems with current care” in order to show potential strategies and
activities to address the problem, the outputs/process measures, and the anticipated outcomes. This figure summarizes the content from the
detailed logic model which was developed.

consider in being proactive rather than reactive. It is also development of evidence-based tools and protocols will
critical that efforts to empower patients consider the standardise the approach to commonly occurring issues,
changing complex nature of where patients are on their focusing on the following issues in particular. These condi-
chronic disease journey. A recent review highlighted the tions have been chosen based on the large impact they have on
development of five different attributes; acceptance, coping, risk of hospitalisation and mortality [39]:
self-management, integration and adjustment [38]. At-
(i) Prevention of falls and resulting fractures
tempts to empower patients may be problematic without
understanding and accounting for these different attributes (ii) Reducing urinary tract infection
and how they are translated into ways of living. (iii) Reducing neuropsychiatric disorders including
delirium, hallucinations, and psychosis
3.3. Empowerment of Healthcare Professionals. We recognise (iv) Reducing mood disorders and anxiety (including
a need to educate and upskill healthcare professionals, in- depression)
cluding clinicians and therapists, to ensure that they have (v) Reducing pneumonia caused by swallowing issues
PD-specific expertise [10] and are able to work in this new
(vi) Reducing social and functional decline
model of care by supporting them in multidisciplinary col-
laboration and delivery of personalised care. In addition, we An online collaboration platform (see section below on
will ensure that up-to-date guidelines will be made readily technology) will allow all health professionals to see at a
accessible for all healthcare professionals. Furthermore, glance who is involved in each patient’s care and what
6 Parkinson’s Disease

priorities have been set for each patient’s care. Regular be communicated to a relevant healthcare professional or
multidisciplinary team meetings will facilitate discussion of carer with a low burden for patients themselves. Whilst not
complex cases and ensure goals of treatment are aligned. appropriate for all, some patients may wish to access video
consultation and others may benefit from being directed
towards freely available, approved apps, specific to their
3.4. A Population Health Approach. A central philosophy in
particular needs. We plan to have smaller substudies that will
our model is to deliver care according to a population health
look at the value of this enhanced digital technology.
approach, which can be defined as: “an approach that entails
Emerging evidence supports this approach. A recent study
both (1) a clinical perspective, focused on delivering care to
demonstrated the value of home sensing devices for early
groups enrolled in a health system; and (2) a broader per-
detection of urinary tract infections in people with dementia
spective, focused on the health of all people in a given
[44].
geographic area and emphasises multi-sector approaches
and incorporation of nonclinical interventions to address
social determinants of health” [40]. This means that a col- 3.6. Application of the PRIME-Parkinson Model. Table 2
laborative group of healthcare professionals in a certain shows a hypothetical case study of a patient with PD and
geographic region feel a responsibility to improve care for all exemplifies some of the problems which such a patient may
patients, carers, and other people within their region. Be- encounter within the existing system. An alternative sce-
cause of this responsibility, these health-care professionals nario is then suggested to demonstrate how implementation
will organise and integrate care in the region and deliver of some components of the PRIME model may have led to a
joint services, e.g., information, educational courses or a better outcome.
helpline, to all patients with PD, carers and the wider
population in the region. There is some initial evidence to
suggest that this approach leads to better outcomes, while 4. Discussion
overall healthcare spending remains the same [40]. A
In the PRIME-Parkinson project, we present a new inte-
population approach will not only consider the upstream
grated model for managing PD and the various forms of
sociocultural determinants, but will also focus on health
atypical Parkinsonism, which incorporates five key
inequalities and equitable access to health care. Whilst we
approaches.
may or may not be able to modify the existing sex-related
Whilst no evidence has yet been gathered on the utility of
differences in PD risk (men being at higher risk) [41], it is
PRIME-Parkinson care, as a whole, it draws on previous
essential that all sections of society access care in relation to
research into specific elements of care and attempts to learn
need and not on the basis of age, sex, socioeconomic status,
from previous positive and negative findings which relate to
ethnicity, or other factors [11]. Any new interventions
each of the five components of the PRIME-Parkinson model
should address existing inequities rather than widen them
as well as responding to the challenges that both patients and
(“intervention generated inequalities”) which may occur if
professionals express around the delivery of care.
more educated patients are better able to make use of these
The first component of the PRIME-Parkinson model is
interventions [42].
that of personalised care management. Despite the lack of
evidence to support the benefit of PD nurse specialists on
3.5. Patient and Professional Friendly Technology. We will clinical outcomes or quality of life, their input has a positive
provide a platform which can be accessed by all healthcare impact on subjective patient wellbeing, as measured with a
professionals involved in a patient’s care, as well as by the global health question [46]. In another small study, which
patients themselves, through which to communicate se- randomised patients to receive nurse practitioner input
curely and align and coordinate care. This platform, whilst versus usual care, 96.2% of patients felt that provision of
not being a substitute for the (electronic) health record, will specialist nurses should be an important priority for the
give an up-to-date insight into the members of the multi- health service [47]. Indeed, guidance from the National
disciplinary team involved in a given patient’s care, allocated Institute for Health and Care Excellence (NICE) states that
actions, and progress on obtaining the goals set out in the patients need access to monitoring and a point of contact for
personalised care plan. We envisage the development of a support and information, suggesting this may be delivered
patient “dashboard” which enables staff to rapidly ascertain a by a Parkinson’s nurse [48].
patient’s risk category, as well as showing all inputs from the In the PRIME-Parkinson model, the intention is for a
multidisciplinary team. We will also support professionals Parkinson’s nurse to take a significant role in care man-
with integrated decision support solutions to assist evidence- agement. A trial in the United States which randomised PD
based care. We note that several efforts are currently ongoing patients to PD nurse-led case management, including de-
to translate abstract plans on the role of technology in the velopment of a personalised care plan, coordination of care,
model into concrete action points. and use of communication tools, found improvement in
Some patients may benefit from monitoring their several PD quality indicators (assessed by review of medical
symptoms in the home environment. We will develop records and by participant survey), but concluded that work
electronic survey-based monitoring, which was beneficial in is needed to determine if this translates into improved
other chronic diseases [43]. Furthermore, monitoring based patient-centred outcomes, such as quality of life and de-
on wearable devices can collect relevant information that can pression scores [49]. A randomised controlled trial in which
Parkinson’s Disease 7

Table 2: A hypothetical case study. Scenario 1 illustrates a chain of events resulting in an adverse outcome for a patient with PD. Scenario 2
offers an example of how this scenario could be managed differently with the application of the PRIME-Parkinson model. FRAX refers to the
University of Sheffield fracture risk assessment tool [45].
Case study
Mrs. Ahmed is a 78-year-old lady who has had idiopathic PD for 5 years. She has recently begun to have a few “minor falls” which she has
put down to “getting older.” She has noticed she sometimes feels dizzy when she stands up but doesn’t like to bother her GP about it and
knows it can be very hard to get an appointment. She considers mentioning it to her PD consultant when she next goes to clinic in 6
months’ time but decides she won’t because she believes the dizziness probably doesn’t have anything to do with her Parkinson’s disease.
Scenario 1 (existing care model)
Mrs. Ahmed begins to feel less confident going out and stops going to social activities. While taking the bins out one evening, she has a bad
fall onto a concrete path, landing on her left side.
Her neighbour calls an ambulance and she is taken to hospital, where she is diagnosed with a neck of femur fracture, requiring an operation.
She develops a lower respiratory tract infection and postoperative delirium, which leads to a prolonged stay in the acute hospital, following
which she is transferred to a community hospital for ongoing rehabilitation.
Scenario 2 (PRIME care model)
Remembering that light-headedness was mentioned at a PRIME-Parkinson-delivered information session she had recently attended, Mrs.
Ahmed contacts the single point of access helpline to discuss her concerns about her recent dizzy spells. This information is logged in the
collaboration platform and relayed to Mrs. Ahmed’s Parkinson’s nurse who telephones her to discuss her symptoms further and discovers
that she has also begun to have a few falls as well as a number of “near misses.” The Parkinson’s nurse explores the impact which these
symptoms are having on her life; Mrs. Ahmed fears that she may not be able to attend her nephew’s wedding next month due to her
dizziness and poor balance.
Together, they agree a plan of action, with the aim of helping Mrs. Ahmed achieve her goal of attending the wedding:
(i) Blood pressure (BP) and medications are reviewed; the Parkinson’s nurse suggests to the GP that he consider stopping amlodipine
and Mrs. Ahmed is given advise about increasing her fluid intake, with a plan to review BP and symptoms following these changes.
(ii) A referral is made to a physiotherapist, with specialist expertise in PD, who suggests a personalised exercise plan to improve her
strength and balance.
(iii) A referral is made to an occupational therapist (OT), with specialist expertise in PD, who visits her at home and advises some
changes to reduce hazards and organises for some handrails to be installed.
(iv) The Parkinson’s nurse advises that Mrs. Ahmed organise an eye test at the opticians.
(v) The Parkinson’s nurse calculates a FRAX score, with PD included as a secondary cause of osteoporosis, and liaises with the GP
regarding the result.
(vi) Mrs. Ahmed is directed to Parkinson’s UK patient information leaflet on “Falls and Parkinson’s,” in case she wishes to read about
further tips to reduce her risk of falling, and is given a leaflet on ways to improve her bone health.
(vii) They agree to have a telephone appointment in 2 weeks to review how she is progressing towards her goal.
(viii) The physiotherapist and OT document their input via the collaborative platform so the Parkinson’s nurse is aware of the actions
which have occurred ready for the telephone follow-up.

the intervention group had access to a PD nurse specialist in helpful as animations and videos, if designed appropriately,
the role of case manager, alongside other interventions, may overcome barriers around literacy. A focus on equitable
including regular home visits, a telephone hotline, and in- access to optimum care for all patients with PD and their
dividual treatment plans, did find an improvement in PD- family highlights the importance of a population health-
related quality of life and motor and nonmotor symptoms at based approach that goes beyond an individualistic medical
6 months [50]. model.
The second component of PRIME-Parkinson, namely, A core vision of our model is to deliver personalised,
education and empowerment of patients and carers, aims to patient-centred care. Qualitative research, involving PD
provide patients with PD and their carers with information patients and their carers, has revealed a desire for these
tailored to their needs [8]. The Patient Education Pro- individuals to be actively involved in the decision-making
gramme for Parkinson’s Disease (PEPP) is an example of an process and for their values and preferences to be respected
intervention designed to address these needs; it consists of [8]. A Cochrane review of trials looking at personalised care
eight sessions delivered by trained healthcare professionals planning interventions for a range of chronic conditions
and draws on cognitive behavioural therapy techniques, suggests a trend towards a positive effect on psychological
covering topics such as self-monitoring, stress management, health and ability to self-manage when a collaborative ap-
and how to be proactive in seeking out information [51]. In a proach is used to plan care [53]. The process of a patient and
randomised controlled trial, the PEPP reduced the burden of clinician jointly agreeing goals, along with actions to address
psychosocial problems for carers with a trend towards them, is an important aspect of developing a personalised
improved quality of life for patients [52]. These effects were care plan [53]. Goal-attainment scaling, a means of nu-
replicated when the PEPP was evaluated in clinical practice merically comparing multiple, individualised outcomes
[51]. We will face the challenges of providing different which are meaningful to patients, has been used in a range of
education packages for different stages of the disease as well patient groups including frail, older adults [54]. A goal-
as making these accessible for different ages, gender, and oriented approach had positive effects, on both goal at-
socioeconomic and ethnic groups. New technology may be tainment and secondary outcomes, when applied to
8 Parkinson’s Disease

cognitive rehabilitation in PD dementia [55] and when continuing professional development, as well as commu-
incorporated into a programme of physical and occupational nities of patients who share knowledge and experiences [60].
therapy for PD [56]. A nonrandomised trial in which the Giladi et al. describe an interdisciplinary team approach for
intervention group received assessment at a tertiary centre PD in Tel Aviv, which is supported by therapists commu-
and formulation of an individual care plan, in addition to nicating and consulting electronically, as well as use of
access to a network of upskilled Allied Health Professionals multidisciplinary team teleconferences to plan immediate
(ParkinsonNet), found no effect on the primary endpoint interventions for patients approaching crisis [63]. A small
after correcting for baseline disease severity; however, any study aiming to deliver person-centred care to underserved
positive treatment effect is likely to have been diluted since PD patients in Florida, by means of home visits conducted
only 73% of the recommendations made by the tertiary team by movement disorder clinicians, used video recordings of
were implemented in the community, highlighting the the visit, uploaded to the patient electronic health record, to
potential benefit of combining such interventions with a care promote discussion of cases at a weekly multidisciplinary
manager role, to ensure the personalised care plan is fol- team meeting [64]. A smart phone-based Parkinson’s
lowed [57]. Tracker App, developed to support self-management, has
The third component of the PRIME-Parkinson model been found to improve medication adherence and patient-
focuses on empowerment for healthcare professionals. perceived quality of consultation when compared to usual
Given the complex range of symptoms experienced by care in a multicentre randomised controlled trial [65]. App-
patients with PD and the limitations of pharmacotherapy, based technology is being used in a trial in which patients in
the need to involve a range of allied health professionals in the intervention arm will have access to a tablet-based,
patient care is well-recognised; there has been a move away individualised physiotherapy training programme alongside
from a monodisciplinary approach, in which a clinician an existing therapy programme [66]. This gives a further
retains overall responsibility for patient care, with occasional example of the way in which technology may support the
referral to an allied health professional for input, towards a delivery of proactive and integrated care and suggests the
more integrated approach in which all professionals in- potential to investigate the benefit of enhanced technology in
volved in a patient’s care work collaboratively, keeping the substudies embedded within PRIME-Parkinson.
patient at the centre of all decision-making [58]. An um- Whilst some elements of the proposed model have been
brella review of systematic reviews, looking at integrated trialled before, with varying degrees of success, it is possible
care and its impact on hospitalisation in chronic diseases, that real benefit will only be seen when the separate com-
noted that interventions which involved a multidisciplinary ponents are combined to form a truly integrated model of
team component were more effective for management of care. This hypothesis is supported by a review of systematic
specific conditions, such as heart failure, than for managing reviews which found that multicomponent interventions for
chronic disease in general, concluding that it is essential for chronic disease were more effective at reducing hospitali-
multidisciplinary team members to have condition-specific zation and length of stay than interventions focusing on only
expertise [59]. The ParkinsonNet strategy, developed in the one intervention [59]. While combining multiple compo-
Netherlands and first tested in 2004, sought to create a nents into one model of care, we propose that the exact
structure for the upskilling of healthcare professionals in- combination and balance of each component that a patient
volved in caring for patients with PD, initially physiother- receives should be individualised to them which reflects the
apists and later other allied health professionals [60, 61]. A essence of truly personalised care.
cluster randomised controlled trial involving 16 clusters, The PRIME-Parkinson model has a number of features
randomised to receive ParkinsonNet physiotherapy versus of a complex intervention, as defined by the Medical Re-
usual care for 6 months, did not demonstrate a positive effect search Council [29]: multiple components, whose applica-
on functional status or quality of life, although did show a tion will be tailored differently according to the patient
reduction in costs [62]. However, only one-third of patients profile, as well as the unpredictable way in which these
in the intervention group received ParkinsonNet physio- elements may interact with one another when combined
therapy, therefore reducing the difference between control within the context of clinical practice. Evaluation within the
and active groups; additionally, training of physiotherapists framework of a logic model, as described here, reflects our
occurred not long before enrolment of patients which may commitments to robust assessment of the effectiveness of
not have allowed sufficient time to develop specialist ex- different components of the PRIME-Parkinson care model.
pertise [62]. Whilst the need for multidisciplinary team
input in PD would seem clear, our model emphasizes the
need for these multidisciplinary team members to receive 5. Conclusion
augmented, PD-specific training and to ensure that input is
coordinated and person-centred. A new integrated model of care, PRIME-Parkinson, has been
The PRIME-Parkinson model aims to use patient and designed for patients with PD, using the framework of a logic
professional-friendly technology to enhance delivery of model. The PRIME-Parkinson model comprises
education, promote collaboration between healthcare pro-
(1) Personalised care management
fessionals, and facilitate coordination of care. The Parkin-
sonNet programme has utilised technology, in the form of (2) Education and empowerment of patients and carers
online communities of healthcare professionals to facilitate (3) Empowerment of healthcare professionals
Parkinson’s Disease 9

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Figure S1 summarizes the full logic model for the PRIME-
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