Impact of Nurse Navigation on Parkinson Disease Community Wellness
Stephanie De Santiagoa, b and Diane Nuñeza
aCollege of Nursing and Health Innovation, Arizona State University, Phoenix, AZ, USA
565 N. 3rd St, Phoenix, AZ 85004, United States
bBanner Neuro Wellness, Banner University Medical Center-Phoenix, Phoenix, AZ, USA
1111 E. McDowell Rd, Phoenix, AZ 85006, United States

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ABSTRACT

Background: There is a great need to provide people with Parkinson disease (PD) not only
quality medical care, but social support and disease-related resources. Nurses have the training
and interpersonal relationship skills to make a tremendous difference in the lives of people living
with PD. Objective: This quality improvement project evaluated the effect of a nurse navigation
program on self-efficacy among people living with PD. Methods: Twenty-four members of a PD
specific wellness center in the United States were recruited to participate in a nurse navigation
program for a 12-week period. The intervention period included an initial needs assessment, ten
individual 45-minute sessions focused on specific aspects of PD wellness, and a concluding visit.
Results: There was a significant decline in quality of life based on average PDQ-39 scores for
the participants in January 2019 (M =24.44, SD=16.66) compared to January 2018 (M=20.11, SD
=12.78) where higher scores signify worse quality of life; t(23)-4.329 p=0.025. Average selfefficacy for managing chronic disease pre-intervention scores (M=6.58, SD=1.70) verses postintervention scores (M=7.44, SD=1.48) showed a significant increase in self-efficacy with a
medium effect size; t(23)-0.854 p=0.016, d=0.54. Additionally, unique satisfaction surveys
showed high satisfaction with nurse navigation throughout the participant sample and wellness
center staff members. Conclusions: A nurse navigation program focusing on specific aspects of
PD management can help improve participant’s confidence in self-management of PD despite
disease progression. Additionally, nurse navigation for people with PD was associated with high
satisfaction among participants and staff members of a PD wellness center.
Keywords: Patient Navigation, Self-Efficacy, Quality of Life, Patient-Centered Care,
Neuroscience Nursing, Community Health Services, Self-Management

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INTRODUCTION
Parkinson’s disease (PD) is a chronic progressive neurodegenerative disease that affects
about one million Americans and over 10 million people worldwide. This disease is
characterized by symptom manifestation including various motor and non-motor symptoms. As
the second most common neurodegenerative disease, there is a great need to provide people with
PD quality medical care, social support and disease management resources [1]. Research shows
that PD specialist nurses provide practical skills, experience, and knowledge about PD that is a
crucial component of personalized care and support for this patient population. Registered nurses
specializing in PD can improve patient’s sense of wellbeing while mitigating increased
healthcare cost. Nurse-led PD services can also improve patient satisfaction, disease selfmanagement, and overall patient care [2, 3, 4, 5, 6]. Registered nurses with a special interest and
training in PD have played an active role in patient care in the United Kingdom since 1992 [2].
While other countries seem to be effectively utilizing nursing roles to provide PD related support
and guidance, the United States has room for improvement [2,3].
Currently, areas where registered nurses in the United States are commonly providing
disease management and guidance in a navigation role are oncology care and diabetes
management. Oncology nurse navigators assist patients, families, and caregivers by helping them
gain access to quality healthcare while overcoming barriers. This unique nursing role has been
shown to improve patient and staff satisfaction related to oncology care while removing barriers
in order to improve access to quality care [7, 8]. Additionally, nurse navigation can be useful for
diabetes care in the community by providing patients with customized self-management
programs and care coordination [9]. Positions similar to the nurse navigator position are also
being used in other areas of healthcare such as emergency departments, hospitals, home health
care, palliative care, and generalized care of older adults with chronic conditions. These nurses

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focus on aspects of care such as medication management, chronic disease self-management,
education, and fostering provider-patient communication [10, 11, 12, 13, 14].
High-quality nursing professionals knowledgeable about the disease and its unique
characteristics are essential to the successful management of people with PD in the community
wellness setting and aspects of the nurse navigator roles throughout other medical disciplines can
be molded to better serve people with PD. Nurses play an important role in fostering a
multifaceted interdisciplinary approach to community wellness for people with chronic
conditions such as PD. A nurse navigator can conduct patient assessments, give supportive care,
manage complex health conditions, and assist with integration and communication between
clinicians. The nurse can act as a liaison between the patient and providers to ensure that the
patient’s problems are addressed, and the plan of care is clearly communicated and agreed upon
[4, 15, 16]. Additionally, nurse navigation can target different care domains crucial to improving
self-management of PD such as patient education and problem solving [17]. The purpose of this
quality improvement project is to develop a nurse navigation program at an established
Parkinson-specific community wellness center and evaluate its effect on self-efficacy for
managing chronic disease among people living with PD.
MATERIALS AND METHODS
This project was conducted in a comprehensive Parkinson’s-specific community wellness
center that is part of a large not-for-profit health system in the Southwestern United States. The
wellness center offers various group exercise classes, one-on-one mobility training, support
groups, educational sessions, and social activities to active members with PD and their
caregivers for a flat monthly fee. A nurse navigation program was initiated at the wellness center
and was open to all paying members at no additional cost. The nurse navigation program was

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designed with key aspects of self-management in mind and by taking into consideration the
unique needs of people diagnosed with PD [17].
Ethical Considerations
This project was submitted to the Arizona State University (ASU) Institutional Review
Board (IRB) as a quality improvement project and gained expedited IRB approval for one year.
This quality improvement project provided participants with a consent letter summarizing project
specifics and participant expectations during the initial nurse navigation visit. Completion of the
demographics sheet and Self-Efficacy for Managing Chronic Disease 6-item Scale located in the
initial participant packet following the consent letter was considered implied consent to
participate in the project. Additionally, a HIPAA form was signed by participants granting the
project team access to their exercise file at the wellness center and permission for the nurse
navigator to discuss necessary medical information with his or her neurologist. No compensation
was provided for participation other than a nominal gift of a pill box.
Recruitment
After obtaining IRB approval, 24 people with a clinical diagnosis of PD were recruited to
participate in the 12-week nurse navigation program at the wellness center. Participants were
recruited by invitational flyers posted in several different areas of the wellness center along with
a recruitment presentation during a support group meeting about the new nurse navigation
program that provided project specifics. Inclusion criteria for the sample included over the age of
18 years old, English speaking, able to read and write, diagnosed with PD by a neurologist, and
currently paying for and participating in classes offered at the Parkinson’s specific community
wellness center. Exclusion criteria was less than 18 years of age, non-English speaking, no
diagnosis of PD and not a current paying member of the wellness center.
Participant Sample

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The average age of the subjects was 69 (SD=5.44) years and the ages ranged from 57 to
78 years. The sample consisted of 14 (58.3%) males and 10 (41.7%) females and all participants
were Caucasian. The average number of years diagnosed with PD for the sample was 7.84
(SD=6.16) years. The sample had an average of 3.88 (SD=9.28) falls in the past year and an
average of 0.08 hospitalizations (SD=0.28) in the past year. Additionally, we looked at
participant’s home support and found that 17 (70.8%) participants reported having help in the
home and one participant (4.2%) reported having paid help.
Intervention
The nurse navigation program spanned a 12-week period with weekly 45-minute
individual sessions conducted by the nurse navigator either in person or via telephone for each
participant and visit attendance was tracked using a computerized weekly encounter log. Spouse
caregivers were also welcomed to join participants during each session, of which 9 (37.5%)
caregivers consistently participated in their partner’s sessions. The registered nurse providing the
intervention had specialty certification in neuroscience along with previous experience working
with and managing people diagnosed with PD. Each session consisted of a pertinent topic related
to PD management with the first and last week being initial and concluding visits. Table 1
describes in further detail all PD topics that were addressed by the nurse navigator, the order in
which they were addressed, and the details of each session. Participants were also able to voice
additional questions or concerns they had about their health or PD management during each
session.
Measures
Outcome variables for this project included self-efficacy for managing chronic disease
and participant and staff perceived value of the nurse navigation program. Quality of life data
was also gathered to provide additional information on impact of PD on daily life of participants

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for better interpretation of project outcome variables. Quality of life was measured over one year
using retrospective data from January 2018 wellness center files compared to data collected in
January 2019 at the wellness center using the PDQ-39. The PDQ-39 demonstrates satisfactory
internal consistency (a = 0.51 to 0.96) and is proved to be reproducible (0.86 to 0.96). Subscales
of the PDQ-39 showed convergence with similar subscales of the 36-Item Short Form Health
Survey (SF-36) and is able to distinguish between levels of symptom progression [18]. The
maximum score of this PD specific measurement tool is 100 with higher scores indicating poorer
quality of life.
The Self-efficacy for Managing Chronic Disease 6-item Scale was administered pre and
post-intervention to measure self-efficacy. This Likert scale measures an individual’s confidence
in self-management of PD by assessing topics such as symptom control, role function, emotional
function and communication with physicians. The Self-efficacy for Managing Chronic Disease
6-item scale is a valid and reliable measure of self-efficacy for managing disease and shows
good external validity with the German General Self Efficacy Scale (rs= 0.578, p<0.001) and
high internal consistency reliability (0.91 to 0.93) [19, 20]. This is a 6-item Likert scale with 1
being not at all confident and 10 being fully confident and total scores indicate the average of all
6 questions with a maximum score of 10. Due to limited measurement tools related to nurse
navigation satisfaction, staff and participant satisfaction were obtained using originally created
self-report surveys that included ordinal quantitative data along with qualitative data. These are
non-standardized measures that have not been researched for validity or reliability and were used
solely to gain a better understanding of overall participant perceptions of nurse navigation.
Data analysis
Our primary analysis assessed the change in overall self-efficacy scores pre and postintervention along with evaluating participant’s satisfaction with nurse navigation services.

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Secondarily, we assessed quality of life over one year to obtain a better understanding of quality
of life changes related to disease progression in the participant sample. All statistical data was
stored and analyzed using SPSS and descriptive statistics were used to describe the sample and
outcome variable. A two-tailed paired samples t-test was used to analyze the data of the outcome
variables of interest.
RESULTS
Statistical analysis was conducted to analyze data related to quality of life, self-efficacy,
and program satisfaction. We used an alpha level of 0.05 for all statistical tests. A paired samples
t-test was conducted to compare quality of life in 2018 verses 2019 in the participant sample.
There was a significant increase in total PDQ-39 scores from January 2018 (M=20.11,
SD=12.78) verses January 2019 (M=24.44, SD=16.66) signifying an overall decline in quality of
life; t(23)-4.329 p=0.025 (Figure 1). The PDQ-39 covers 8 dimensions that are assumed to
impact quality of life and are used to compute the total quality of life scores reported above.
PDQ-39 dimensions include mobility (t(23)-1.766 p=0.091), activities of daily living (t(23)1.446 p=0.162), emotional well-being (t(23)-.827 p=0.417), stigma (t(23)-2.114 p=0.046), social
support (t(23)-2.181 p=0.040), cognition (t(23)-1.550 p=0.135), communication (t(23)-2.095
p=0.047), and bodily discomfort (t(23)0.424 p=0.676).
A paired samples t-test was also conducted to compare the average self-efficacy pre and
post-test scores. Significant improvement in the self-efficacy for managing chronic disease 6item scale scores were noted when comparing before (M=6.58, SD=1.70) verses after (M=7.44,
SD=1.48) participation in the nurse navigation program for the participant sample, t(23)-0.854,
p=0.016 (Figure 2). A medium effect size was observed for the participant sample (d=0.54). A
unique satisfaction survey was created to evaluate participant satisfaction with a max score of 70.
Results suggest an overall high participant satisfaction with the various aspects of the nurse

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navigation program targeted by the survey (M=62.208, SD=8.37). An additional satisfaction
survey was created to evaluate wellness center staff satisfaction with nurse navigation services
that were offered to their patients. This survey included three questions with a scale of 1 being
disappointing and 5 being exceptional with a max score of 15. Results suggest that all staff
members were highly satisfied with the implementation of the nurse navigation program at their
place of work (M=15, SD=0).
DISCUSSION
People diagnosed with PD must have effective self-management skills in order to delay
the expected decline in health and progression of disease. Programs to target self-management
are crucial in this population and include education, problem solving, and goal setting [17]. Selfefficacy is the confidence a person has in their ability to complete an activity and is a way of
measuring confidence in self-management of chronic disease [21, 22]. The findings from this
quality improvement project suggest that nurse navigation can provide a systematic approach to
improving self-efficacy for managing PD and can play a role in refining self-management skills.
Nurse navigation imparted these skills in participants using these key components of selfmanagement during individual navigation sessions to support participants, help them address
barriers, and create goals related to their specific disease process.
Results showed that as expected, after one year of PD progression, quality of life
significantly decreased in the 24-participant sample. Average PDQ-39 scores in both 2018 and
2019 for the participant sample (20.11 and 24.44 respectively) reflected better scores than the
quality of life of the 124-participant sample described in a previous study using the same tool
(M=30.0). This could be due to consistent participation in wellness center exercise classes and
social support activities in this subject group along with advanced medical therapies developed
since the previous study was conducted [23]. The PDQ-39 dimensions of stigma, social support,

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and communication showed a statistically significant decline over one year. Interestingly, of all
the dimensions assessed by the PDQ-39, the only dimension that did not worsen from 2018 to
2019 was bodily discomfort, again, possibly due to consistent participation in wellness center
activities. However, this improvement was not statistically significant.
These findings are similar to a recent study conducted by Wagner and colleagues [24]
that found while nurse navigation for oncology patients did not improve quality of life, these
services did improve patient experience. We also found quality of life was not improved but
satisfaction survey results for participants of the nurse navigation program showed participants
as well as wellness center staff members were highly satisfied with nurse navigation program.
Other previous research established results similar to the current findings relating to high
satisfaction and sense of wellbeing in participants of a nurse navigation program for oncology
patients as well as for people diagnosed with PD [4, 5, 7, 25].
Limitations
Limitations of this project include the use of self-report surveys to quantify quality of life
and self-efficacy, absence of a control group to measure differences between people who attend
the wellness center and those who do not, and lack of randomization of participants.
Additionally, the program was open to all wellness center participants and participants were not
matched for disease progression using a standardized form of progression measurement such as
the Hoehn and Yahr scale or the Unified Parkinson’s Disease Rating Scale (UPDRS).
Future Implications
Further studies with larger, more representative cohorts are needed to build the evidence
to support nurse navigation as a self-management intervention for people with PD. It would also
be beneficial to conduct more longitudinal studies to identify if improvements in self-efficacy
due to nurse navigation are sustainable over time. Future research should also include

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examination of nurse navigation at a multitude of PD community wellness centers, influence on
caregivers, and the application of nurse navigation to patients newly diagnosed with PD who
may not be as familiar with the disease as the participants in this study who had a longer duration
of diagnosis.
Conclusion
In summary, results show that after a year of PD progression resulting in an overall
expected decline in quality of life for participants, nurse navigation was able to improve selfefficacy for managing PD. Additionally, results of a satisfaction survey for participants and
healthcare workers at the wellness center showed both groups demonstrated high satisfaction
with nurse navigation services overall. Effectively delivering self-management support at a
community wellness center specifically designed for people with PD may help meet the diverse
needs of people with PD who could benefit from better access to self-management support and
guidance.
ACKNOWLEDGEMENTS
This study was supported in part by Grant No PF-NFA-1802 from the Parkinson’s
Foundation. Partial funding was also provided by the 2018 Project Award from the Gerontological
Advanced Practice Nurses Association Foundation, Inc. The authors would also like to thank
Banner Neuro Wellness and Banner Health for providing utilities and resources for this study.
CONFLICT OF INTEREST
The authors have no conflict of interest to report.

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Table 1
Summary of Nurse Navigation Program
Topic

Description

Week One

Initial Needs
Assessment

Explanation of program, pre-intervention SEMCD-6 completion,
medical history review, establish goals of care

Week Two

Medication Review

Review/creation of medication list, medication education (uses, side
effects, interactions), pill box distribution

Week Three

Motor Symptom
Education

Education and management guidance related to individual
predominant motor symptoms

Week Four

Depression and
Sleep

Completion of GDS and Epworth sleepiness scale, discussion of
findings and approaches to improving depression and sleep

Week Five

Cognition

Completion of MoCA, education related to PD cognitive changes
and ways to improve/maintain cognition

Week Six

Medication Review

Review of medication changes, education on and discussion of
appropriate management of medications

Week Seven

ADL Assessment

Discussion of functional status and various medical devices and
resources available to assist with ADLs and home life

Week Eight

Transportation
Assessment

Completion of trail-making-test to assess executive function and
discussion of driving safety and alternative transportation options

Week Nine

Advanced
Directives

Completion/review of medical power of attorney and living will
documents, confirmation that end of life planning is understood and
decisions are in place and clearly communicated

Week Ten

Hospital
Preparedness

Provided an “Aware in Care” kit from PD foundation, helped with
filling kit with personalized information, education of necessary
tools and resources pertinent to ensure safe hospitalization with PD

Week Eleven

Medication Review

Education of medication affordability and new medications for PD
coming to the market soon

Week Twelve

Closure Assessment

Review goal achievement, discuss areas that still need assistance,
post-intervention SEMCD-6

Notes. PD, Parkinson’s disease; SEMCD-6, Self-efficacy for Managing Chronic Disease 6-item scale; MoCA, Montreal
Cognitive Assessment; GDS, Geriatric Depression Scale; ADLs, Activities of Daily Living.

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Figure 1 Mean Quality of Life Scores

Figure 1. PDQ-39 scores are reported as a percentage of 100 for participants in 2018 compared
to 2019 with inclusion of all 8 individual dimensions assessed by the PDQ-39. Lower numbers
indicate better quality of life.

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Figure 2
Mean Self-efficacy for Managing Chronic Disease 6-Item Scale scores

Figure 2. Summary of mean SEMCD-6 scores for each question pre-intervention vs. postintervention. Scores of this scale are reported on a 1-10 scale with 10 indicating high selfefficacy and 1 indicating low self-efficacy.

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