The ParkinsonNet Concept: Development, Implementation and Initial Experience

Abstract

The quality and efficiency of allied health care in Parkinson's disease (PD) must be improved. We have developed the ParkinsonNet concept: a professional regional network within the catchment area of hospitals. ParkinsonNet aims to: (1) improve PD-specific expertise among allied health personnel, by training a selected number of therapists according to evidence-based guidelines; (2) enhance the accuracy of referrals by neurologists; (3) boost patient volumes per therapist, by stimulating preferred referral to ParkinsonNet therapists; and (4) stimulate collaboration between therapists, neurologists, and patients. We describe the procedures for developing a ParkinsonNet network. Our initial experience with this new concept is promising, showing an increase in PD-specific and a steady rise in the patient volume of individual therapists. © 2010 Movement Disorder Society

Full text

The ParkinsonNet Concept: Development, Implementation and
Initial Experience
Maarten J. Nijkrake, PT, MSc,
1,2
Samyra H.J. Keus, PT, MSc,
1,3
Sebastiaan Overeem, MD, PhD,
1
Rob A.B. Oostendorp, PT, PhD,
4
Thea P.M. Vliet Vlieland, PhD,
5
Wim Mulleners, MD, PhD,
6
Edo M. Hoogerwaard, MD, PhD,
7
Bastiaan R. Bloem, MD, PhD,
1
*
and Marten Munneke, PT, PhD
1,2,4
1
Department of Neurology, Donders Institute for Brain, Cognition and Behavior,
Radboud University Nijmegen Medical Centre (RUNMC), Nijmegen, The Netherlands
2
Departments of Rehabilitation and Allied Health Occupations, RUNMC, The Netherlands
3
Departments of Physical Therapy and Neurology, Leiden University Medical Center, Leiden, The Netherlands
4
Research Centre of Allied Health Sciences, Scientific Institute for Quality of Healthcare, RUNMC, Nijmegen, The Netherlands
5
Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands
6
Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, The Netherlands
7
Department of Neurology, Rijnstate Hospital, Alysis Zorggroep, Arnhem, The Netherlands
Abstract: The quality and efficiency of allied health care in
Parkinson’s disease (PD) must be improved. We have devel-
oped the ParkinsonNet concept: a professional regional net-
work within the catchment area of hospitals. ParkinsonNet
aims to: (1) improve PD-specific expertise among allied
health personnel, by training a selected number of therapists
according to evidence-based guidelines; (2) enhance the ac-
curacy of referrals by neurologists; (3) boost patient volumes
per therapist, by stimulating preferred referral to Parkinson-
Net therapists; and (4) stimulate collaboration between
therapists, neurologists, and patients. We describe the proce-
dures for developing a ParkinsonNet network. Our initial ex-
perience with this new concept is promising, showing an
increase in PD-specific and a steady rise in the patient vol-
ume of individual therapists. Ó2010 Movement Disorder
Society
Key words: allied health; community networks; delivery
of health care; guideline adherence; quality of care
There is increasing evidence for the effect of specific
interventions delivered by physical therapists, occupa-
tional therapists, and speech therapists in Parkinson’s
disease (PD).
1,2
Unfortunately, care is suboptimal
because allied health therapy is usually provided by
generally active professionals that lack PD-specific ex-
pertise.
3,4
There are two reasons for this lack of exper-
tise. First, allied health personnel is generally not
trained according to evidence-based guidelines. Second,
each therapist treats only a limited number of patients
with PD (typically only 4 patients per year).
4
This low
patient volume does not stimulate therapists to improve
their knowledge about PD or specific guidelines.
To boost the quality of allied health care for PD, a
multifaceted approach is required to: (a) improve the
expertise among professionals; (b) increase the patient
volume per therapist, and (c) enhance collaboration
between professionals. We, therefore, developed the
ParkinsonNet concept: a regional professional network
*Correspondence to: Bastiaan R. Bloem, Department of Neurology
(935), Radboud University Nijmegen Medical Centre, P.O. Box
9101, Nijmegen 6500 HB, The Netherlands.
E-mail: b.bloem@neuro.umcn.nl
Potential conflict of interest: M.J. Nijkrake, PT, MSc: ZonMw
grant (947-04-357), Radboud University Nijmegen Medical Centre
(RUNMC) research grant, employment RUNMC. S.H.J. Keus, PT,
MSc: ZonMw grant (947-04-357), employment Leiden University
Medical Center Leiden (LUMC), employment RUNMC. S. Overeem,
MD, PhD: Employment RUNMC. R.A.B. Oostendorp, PT, PhD:
RUNMC research grant, employment RUNMC. T.P.M. Vliet Vlie-
land, PhD: Employment LUMC. W. Mulleners, MD, PhD: Employ-
ment Canisius Wilhelmina Hospital. E.M. Hoogerwaard, MD, PhD:
employment Rijnstate Hospital, Alysis Zorggroep. B.R. Bloem, MD,
PhD: ZonMw (grant 947-04-357), RUNMC research grant, VIDI
research grant (016.076.352), employment RUNMC. M. Munneke,
PT, PhD: ZonMw grant (947-04-357), RUNMC research grant,
employment RUNMC.
Received 13 July 2009; Revised 25 August 2009; Accepted 29
August 2009
Published online 13 April 2010 in Wiley InterScience (www.
interscience.wiley.com). DOI: 10.1002/mds.22813
823
Movement Disorders
Vol. 25, No. 7, 2010, pp. 823–829
Ó2010 Movement Disorder Society

that tackles all three aspects. Here, we describe the
development and implementation of this ParkinsonNet
concept, as well as our initial experience.
METHODS
Design of ParkinsonNet
The initial concept of ParkinsonNet was conceived
in January 2004 and implemented in the catchment
area of three hospitals in the region of the city of Nij-
megen, The Netherlands. The first element of Parkin-
sonNet is selection of a restricted number of professio-
nals within a given region, to increase patient with PD
volume. We estimated the required number of thera-
pists based on actual referral rates (63% physical ther-
apy; 9% occupational therapy; 14% speech therapy)
4
and the geographic pattern of the catchment area
(6520.000 citizens; 6600 km
2
). In addition, we con-
sidered a maximum travel time of about 15 min by
car, for patients and therapists. On the basis of this, we
intended to include about 19 physical therapists, 9
occupational therapists, and 9 speech therapists.
We then delivered a multifaceted intervention, con-
sisting of continuous education and means to improve
communication (Figure 1). The goals were as follows:
to improve the expertise of the selected therapists; to
reorganize the referral process; and to enhance collabo-
ration and communication between the selected thera-
pists and referring physicians. Specific components of
this intervention were targeted at either allied health
personnel, the participating physicians (including their
PD nurse specialists), or patients with PD. Details of
all components, target groups, and implementation in
time are summarized in Figure 1.
Participating allied health professionals were
required to pay an initial fee of €500 for the first 2
years (2004–2005) and could prolong their participa-
tion with a contribution fee of €95 for the year 2006.
Evaluation of the ParkinsonNet Concept
We also evaluated the impact of ParkinsonNet on
the quality of care. For our initial evaluation, we only
addressed physical therapy because the number of
therapists was sufficient for a reliable analysis. Further-
more, physical therapy was the only discipline for
which evidence-based guidelines were available in
2006,
1
permitting us to monitor adherence to guideline
recommendations.
ParkinsonNet was evaluated in terms of: (a) the
implementation process; (b) PD-specific knowledge
among therapists; (c) adherence to guideline recom-
mendations by therapists; and (d) patient volume per
participating therapist.
Implementation of ParkinsonNet
For this purpose, we asked ParkinsonNet therapists
to rate their satisfaction with each component of the
new network on a numeric rating scale (0 5not satis-
fied at all; 10 5very satisfied). We also monitored
whether therapists had participated in the baseline-
training course, whether they had paid a site visit to
the neurology outpatient clinic and whether they had
attended the subsequent seminars.
PD-Specific Knowledge Among ParkinsonNet
Physical Therapists
For this purpose, all ParkinsonNet physical therapists
completed a detailed examination, consisting of 73
questions based on the evidence-based guidelines. This
examination was completed before the baseline-training
course, at the end of the course, and 1 year thereafter.
Adherence to Guideline Recommendations by
Physical Therapists
We also measured adherence to the evidence-based
guideline for physical therapy in PD.
1
As a control
group, we approached all 86 generally active therapists
in a comparable region, of whom 26 responded. Of
these 26 therapists, 8 had treated at least 1 patient with
PD in 2006, and these 8 professionals were included as
controls. Guideline adherence was measured with a
questionnaire, which included questions on guideline
implementation, and 16 quality process-indicators. The
16 indicators were systematically derived from guide-
line recommendations.
6,7
For each indicator (e.g.,
application of cueing strategies to improve gait), adher-
ence was rated on a five-point scale, ranging from 0
(never) to 4 (always). For each group, a total guideline
adherence score was calculated. Furthermore, for each
group we calculated the proportion of therapists who
‘‘regularly or always’’ followed indicators based on
guideline Level 2 evidence (at least two randomized
clinical trials of moderate methodological quality).
1
Patient Volume of Physical Therapists
The number of patients with PD treated by each Par-
kinsonNet physical therapist was measured annually
using a questionnaire. The number of patients with PD
in 2003, before the start of ParkinsonNet, was derived
824 M.J. NIJKRAKE ET AL.
Movement Disorders, Vol. 25, No. 7, 2010

from a previous survey performed among the same
population of physical therapists in 2004.
4
Statistical Analysis
Differences in guideline adherence between groups
were calculated with the Mann-Whitney U test for con-
tinuous variables, and the Chi-Square test for discrete
data. Differences in knowledge test scores (baseline
versus 1 year after the course) and patient with PD
volume over the years were compared using Wilcoxon
Signed Rank Test.
RESULTS
Implementation of ParkinsonNet
In May 2004, all allied health professionals in the
area of Nijmegen (n 5297) were invited for an infor-
mation evening in which the ParkinsonNet concept
FIGURE 1. ParkinsonNet intervention, graphically depicted as proposed by Perera
5
Timeline ParkinsonNet Usual care Components (C) with their aims (A) and target group (TG)
2004 C: selection of a restricted number of interested professionals who are geographically
covering the region. A: to increase patient volume of a selected number
of professionals. TG: all allied health professionals in the area of Nijmegen.
C: dissemination of the evidence-based guideline for physical therapy in PD by the
Dutch Royal Society for Physical Therapy. A: to increase evidence-based practice for
physical therapy in PD. TG: members of the Dutch Royal Society for Physical Therapy.
2005 C: four-day basic course
a
focusing on PD, multidisciplinary treatment,
guidelines for physical therapy and current standards for speech and
occupational therapy. A: to improve PD expertise. TG: ParkinsonNet professionals.
C: 3-hour seminar
a
covering PD related topics, suggested by ParkinsonNet professionals
themselves and organized by the ParkinsonNet project group. A: to continuously
improve PD expertise. TG: ParkinsonNet professionals.
C: one-day visit of allied health professionals to an affiliated neurology
outpatient clinic. A: to improve collaboration and communication TG:
ParkinsonNet professionals and neurologists.
C: digital newsletter with PD related topics and seminar announcements send by the
project group. A: to improve communication between the project group and
ParkinsonNet professionals. TG: ParkinsonNet professionals and neurologists.
C: ParkinsonNet website online, including names and addresses of all ParkinsonNet
professionals. A: to inform patients, neurologists and other referring
physicians where to find ParkinsonNet professionals, and to improve patient
volume of these professionals TG: patients, neurologists and other referring physicians.
2006 C: information letter covering ParkinsonNet rationale, referral criteria and
website hyperlink, sent by mail. A: to improve patient volume of ParkinsonNet
professionals by preferred referrals. TG: all referring physicians in the
area of Nijmegen.
C: patient information brochure, including the names and addresses of
ParkinsonNet professionals, sent by mail. A: to improve patient volume of
ParkinsonNet professionals by preferred referrals. TG: neurologists, other referring
physicians and PD nurse specialists in the area of Nijmegen.
C: structured referral form with evidence-based indications for allied
health care, sent by mail. A: to improve the accuracy of referrals to allied
health professionals. TG: neurologists, other referring physicians and
PD nurse specialists in the area of Nijmegen.
C: web-based facility online, including a library with recent PD literature,
a forum and mailbox; decision-supportive electronic patient record for physical
therapy based on the guidelines. A: to improve PD expertise and communication.
TG: ParkinsonNet professionals
Components that are delivered at the same time are displayed side by side, while those delivered consecutively are shown one beneath each
other. Squares represent interventions that are delivered once with a fixed content and circles interventions that are continuous with a content
adjusted in time.
a
Certified for physical therapists by the Dutch Royal Society for Physical Therapy.
825THE PARKINSONNET CONCEPT
Movement Disorders, Vol. 25, No. 7, 2010

was presented. Following this evening, 60 physical
therapists, 11 speech therapists, and 9 occupational
therapists volunteered to participate (i.e., more than the
projected number of therapists needed to obtain global
coverage of the entire region). If professionals working
in the same area of the Nijmegen region had volun-
teered, we advised these therapists to decide amongst
themselves who was going to participate. If a decision
could not be made, the project group selected the par-
ticipant based on a written motivation. Eventually, 37
professionals (19 physical therapists, 9 occupational
therapists, and 9 speech therapists) enrolled in Parkin-
sonNet in September 2004. The ParkinsonNet interven-
tion started in October 2004 with a 4-day training
course. The web-based education facility was the final
component to be implemented (in 2006) (Figure 1).
Evaluation of ParkinsonNet
Implementation
Satisfaction scores with the various components of
the ParkinsonNet intervention ranged from 6.7 to 8.1,
with the highest score for the baseline-training course
(Table 1). The participation rate for the baseline-train-
ing course was 100%, for the onsite visits 81%, and
for the follow-up seminars in 2005 and 2006 between
75% and 100%. All therapists prolonged their partici-
pation in the ParkinsonNet project for 2006.
PD-Specific Knowledge Among ParkinsonNet
Physical Therapists
PD-specific knowledge among ParkinsonNet thera-
pists increased significantly immediately after the
course and also remained higher after 1 year, compared
with baseline (Table 1).
Adherence to Guideline Recommendations
Both ParkinsonNet therapists and control therapists
were aware of the existence of evidence-based guide-
lines for physical therapy in PD. However, Parkinson-
Net therapists were more familiar with the content of
the guideline and more often applied guideline recom-
mendations (Table 1). This was further illustrated by
the higher guideline adherence scores of ParkinsonNet
therapists compared with control therapists.
Patient Volume Per Physical Therapist
The number of patients with PD treated annually by
ParkinsonNet therapists increased steadily between
2003 and 2006. This resulted in a more than seven-
fold increase in annual patient volume for Parkinson-
Net therapists compared with control therapists
(Table 1).
There were no differences between ParkinsonNet
therapists and control therapists with respect to gender,
working hours per week, and work experience in years
(Table 1).
DISCUSSION
We have developed the ParkinsonNet concept to
improve the quality of PD care delivered by allied
health professionals. To increase patient volume per
therapist, we decreased the number of professionals
involved in a certain region. The selected ParkinsonNet
professionals were continuously trained to follow evi-
dence-based guidelines. ParkinsonNet also encourages
and supports intensive collaboration and communica-
tion between allied health professionals, neurologists,
PD nurse specialists, and patients. In this article, we
describe our initial experience with this ParkinsonNet.
Therapists’ expertise with PD and the annual patient
volume per professional increased significantly com-
pared with therapists delivering usual care, suggesting
that ParkinsonNet may provide a viable concept.
The patient volume per ParkinsonNet physical thera-
pist increased steadily over the 3-year follow-up. There
is conceivably a direct relation between patient volume
and health outcomes, although this relationship has not
been investigated for allied health care in PD. How-
ever, a comparable relationship has been shown for
several surgical interventions, where dedicated referral
of complex patients to specialized professionals
(leading to higher patient volumes) improved both
patient and process outcome.
11–13
Adherence to PD
treatment guidelines increased significantly among Par-
kinsonNet therapists compared with a small cohort of
general therapists. We found similar results in a recent
study that aimed to develop and evaluate quality indi-
cators for physical therapy in PD.
7
This latter study
showed significant guideline higher adherence scores
for ParkinsonNet therapists (35.1 64.2) compared
with generally active physical therapists (22.2 67.7).
7
The observed rise in patient volume may have been
one of the factors that influenced guideline adherence,
but the educational component of ParkinsonNet may
have contributed as well. It remains difficult to define
a required minimum patient volume per therapist, but
based on the present report and the quality indicators
study,
7
we suggest that therapists need to treat at least
10 patients with PD per year. This level was reached
826 M.J. NIJKRAKE ET AL.
Movement Disorders, Vol. 25, No. 7, 2010

in the second year after implementation of Parkinson-
Net, and numbers of patients seen annually by each
therapist continued to rise in the ensuing years.
Many determinants facilitate or impede implementa-
tion and acceptance of a complex new intervention.
14
For ParkinsonNet, this process turned out to be very
successful. Specifically, we were able to recruit the
projected number of allied health professionals, partici-
pation rates for network activities were high, whereas
expertise increased considerably after the baseline-
training course and remained at an acceptable high
level in the ensuing years. Overall, satisfaction with all
components of the intervention was high, and all
selected professionals prolonged their participation.
The implementation success may result from two fac-
tors. First, we did not start ‘‘from scratch.’’ The con-
cept had previously been examined in a professional
network of physical therapists with expertise in rheu-
matoid arthritis (Fyranet).
15
We learned from this pilot
that it is important to limit the number of participating
professionals, otherwise patient volumes do not
increase sufficiently and therapists lose their interest to
participate. As a ‘‘side effect,’’ the selection procedure
may have led to include a subset of therapists with a
specific interest in PD and a particular dedication to
the topic. This may indeed explain some of the posi-
tive outcomes. As such, the selection procedure should
be regarded as an integral part of the ParkinsonNet
intervention.
A second explanation for the success of Parkinson-
Net is that this concept is based on a careful baseline
examination of the shortcomings within allied health-
TABLE 1. Results for ParkinsonNet physical therapists and general physical therapists
ParkinsonNet
therapists (n 519)
Control
therapists (n 58) P
General characteristics
Males 10 (53%) 6 (75%) 0.28
Working hours per week 34.2 68.9 35.8 67.7 0.35
Work experience in years 20.4 68.8 18.9 67.4 0.56
Implementation of ParkinsonNet
Satisfaction with interventions
(0 5low; 10 5high)
Course 8.1 60.4 n.a.
Seminars 7.5 60.5 n.a.
Information brochure 7.5 60.8 n.a.
Referral form 7.0 60.8 n.a.
Website 7.6 60.6 n.a.
Newsletter 7.7 60.8 n.a.
Web-based facility 6.7 60.6 n.a.
ParkinsonNet in total 7.5 60.6 n.a.
PD-specific knowledge
Right answers in knowledge test (0–73)
a
Before course 38.4 67.5 –
After course 53.1 63.9 –
One year after course 48.8 68.5 –
Guideline adherence
Guideline knowledge
Knows existence of guideline 19 (100%) 7 (88%) 0.12
Knows content of the guideline well 15 (79%) 2 (25%) 0.04
Applies most of the recommendations 16 (86%) 3 (38%) 0.05
Therapists frequently following Level 2 indicators
Application of cueing strategies to improve gait
8,9
19 (100%) 5 (63%) 0.01
Application of cognitive movement
strategies to improve transfers
8,10
19 (100%) 4 (50%) 0.03
Guideline adherence score
(05poor; 645good)
50.9 65.0 34.1 612.3 0.01
Annual volume of PD patients
b
2003 8.1 69.2 –
2004 9.6 610.8 –
2005 12.6 69.6 –
2006 17.6 610.8 2.4 61.2 0.01
Values are numbers (%) or mean 6SD.
n.a., not applicable.
a
Significant difference between before course and one year after course.
b
Significant difference between 2003 and 2006.
827THE PARKINSONNET CONCEPT
Movement Disorders, Vol. 25, No. 7, 2010

care for patients with PD.
4
This survey showed that
allied health professionals expressed a clear desire to
increase their PD-specific expertise and requested
improved collaboration with fellow therapists, referring
medical specialists and patients.
4
We tailored the con-
tents of ParkinsonNet to these specific needs.
Stimulation of collaboration between network partic-
ipants is the third core element of ParkinsonNet.
Improved collaboration has benefits for ParkinsonNet
professionals, referring physicians, and patients with
PD, for several reasons. First, patients are empowered
in their disease management by providing them with
transparent information where they can find optimal
care in their region. For this purpose, we use printed
and web-based brochures that contain the names and
addresses of all participating ParkinsonNet therapists.
Second, PD care becomes more efficient, for example,
by streamlined and fast referrals from neurologists to
dedicated regional therapists with PD expertise. More-
over, the use of structured referral forms assisted neu-
rologists in selecting the proper indications for referral
and may also have resulted in better tailored answers
from allied health professionals.
16
Limitations of this pilot study are the limited num-
ber of participating therapists and the implementation
of ParkinsonNet in just one area. However, this initial
network delivered a proof of principle (as well as proof
of feasibility), which is crucial before starting a formal
trial,
17
and before disseminating the network to other
regions. We have meanwhile been able to extend this
ParkinsonNet concept to now 60 regions in the Nether-
lands, and there is interest to also implement the Par-
kinsonNet concept abroad. In addition, we recently
started a large randomized clinical trial to evaluate the
physical therapy component of ParkinsonNet. The
design of this trial and the first baseline findings are
described in the companion article.
Acknowledgments: We would like to thank P. Hoogen-
doorn (Dutch Parkinson’s disease Society, PPV), T. Lemmers
(Royal Dutch Society for Physical Therapy, KNGF), M. van
Uden (Dutch Association for Occupational Therapy, EN), C.
Kok (Dutch Association for Logopedics and Phoniatrics,
NVLF), M.A.M. Schmidt, A.J.G. Tinselboer, and B.J.M. de
Swart (respectively, occupational therapist, PD nurse special-
ist and speech therapist of the multidisciplinary PD team of
the Radboud University Nijmegen Medical Centre) for their
participation in the ParkinsonNet advisory board.
In January 2004, a project group (M.J.N., M.M., B.R.B.,
R.A.B.O.) designed the first concept of ParkinsonNet and
implemented the network in the catchment area of three hos-
pitals in the region of Nijmegen, the Netherlands. An advi-
sory board (see acknowledgements) was asked to give feed-
back on the concept and to give their professional support
during a meeting with the project group in February 2004.
Author Roles: M.J. Nijkrake, PT, Msc—organization and
execution of research project; design, execution, and review
and critique of statistical analysis; writing of the first draft,
review and critique of manuscript. S.H.J. Keus, PT, MSc—
organization and execution of research project; review and
critique of statistical analysis; review and critique of manu-
script. S. Overeem, MD, PhD—review and critique of statis-
tical analysis; writing of the first draft, review and critique of
manuscript. R.A.B. Oostendorp, PT, PhD—conception and
organization of research project; review and critique of statis-
tical analysis; review and critique of manuscript. T.P.M. Vliet
Vlieland, PhD—review and critique of manuscript. W. Mull-
eners, MD, PhD—organization and execution of research
project; review and critique of manuscript. E.M. Hooger-
waard, MD, PhD—organization and execution of research
project; review and critique of manuscript. B.R. Bloem, MD,
PhD—conception, organization, execution of research pro-
ject; design, review and critique of statistical analysis; review
and critique of manuscript. M. Munneke, PT, PhD—concep-
tion, organization, and execution of research project; design,
execution, review and critique of statistical analysis; review
and critique of manuscript.
Financial Disclosures: M.J. Nijkrake, PT, MSc: Stichting
Robuust grant, employment RUNMC. S.H.J. Keus, PT, MSc:
National Parkinson Foundation grant, employment LUMC,
employment RUNMC. S. Overeem, MD, PhD: Consultancy
for UCB, employment RUNMC. R.A.B. Oostendorp, PT,
PhD: None. T.P.M. Vliet Vlieland, PhD: Employment
LUMC. W. Mulleners, MD, PhD: Consultancy for MSD
(national and global headache advisory board), employment
Canisius Wilhelmina Hospital. E.M. Hoogerwaard, MD, PhD:
Employment Rijnstate Hospital, Alysis Zorggroep. B.R.
Bloem, MD, PhD: Grants from ZonMw, National Parkinson
Foundation, Michael J Fox Foundation For Parkinson’s
Research, Consultancy for GlaxoSmithKline, Boehringer
Ingelheim, TEVA, UCB, Novartis, employment RUNMC. M.
Munneke, PT, PhD: Grants from ZonMw, National Parkinson
Foundation, Michael J Fox Foundation For Parkinson’s
Research and Stichting Robuust, employment RUNMC.
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