Introduction to the PD Care Unit:  Parkinson’s disease (PD) is the second most common neurodegenerative disorder, marked by increasing movement-related disability, including tremor and bradykinesia, impaired balance and coordination, and cognitive changes. Clinically, functional disability arises from both motor and non-motor symptoms. It affects up to 1 million people in the United States and up to 5 million worldwide.^[1]  The prevalence of PD increases with age, with approximately 1% of those age 60 years or older affected, 4% or more of those age 80 years or older^[2] and approximately 5.2% of those in nursing homes.

Objectives:  To understand and express the requirements for technology-enabled relationship management for people with Parkinson’s disease, particularly with respect to emerging therapies based on whole-body workouts, such as dancing or non-contact boxing, and consider whether and how technology-enabled patient engagement and care collaborations solutions may play a role to improve health related quality of life and lower cost for people with PD.

Methods:  We conducted a limited scope rapid review of the literature using the search terms “traumatic brain injury,” “brain injury” and “neuroplasticity.”  We interviewed authors of various papers and articles as well as recognized leaders in the field.  We selected the Parkinson’s disease program at the IU Health Neurology Department, in Indianapolis, Indiana, as our primary use case community.  We interviewed Dr. S. Elizabeth Zauber, physician with IU Health Physicians.  

Results:

• Defining the Parkinson’s Disease Care Unit:

Parkinson’s disease is a progressive neurodegenerative disease that affects motor function and cognitive ability. Parkinson’s disease can cause a variety of other symptoms as it progresses. Tremor is usually the first symptom, appearing in just one limb or on only one side of the body. Tremor may also occur in the lips, tongue, jaw, and eyelids. As the disease progresses, the tremor usually spreads to both sides of the body, although in some cases the tremor remains on just one side. Joint pain, weakness, and fatigue may occur.

As the disease progresses, posture and balance problems develop. After several years, muscle stiffness and tremor increase, the person may become unable to care for him or herself. Weak, stiff muscles eventually may confine the person to a wheelchair or bed. (webMD.com)

To some degree, cognitive impairment also affects many people with PD. The same brain changes that lead to motor symptoms can also result in slowness in memory and thinking. Stress, medication and depression can also contribute to these changes. 

The cause(s) of Parkinson’s disease are not known.  No therapies exist to prevent, delay or reverse the disease.  Therefore, today’s therapies are designed to manage symptoms and complications associated with the disease in order to improve quality of life (Health Related Quality of Life–HRQOL).  The nature and scope of these therapies evolves as the disease progresses and involves coordination of a care team with specialists, primary care staff, home health services, residential nursing facilities and family.  Research includes therapies to prevent, delay the progression and mitigate symptoms.

• Goals of the Parkinson’s Disease Care Unit:

At a high level, the goals of the (PD) Care Unit are to:

• Improve Health Related quality of life for patients with Parkinson’s disease

• Improve operational efficiency of Clinicians and caregivers
  
  
• Reduce the total cost of care for people with Parkinson’s disease

• To support research 

Stakeholder Goals
1. Patients and Caregivers (volunteers, usually family members)

• Maximize independence and slow the progression of the disease
• Minimize physical, psychosocial, emotional and spiritual distress

2. Providers (multidisciplinary care team)

• Improve workload efficiency of care team in order to spend more time on direct patient care
• Provide care coordination among providers, as well as home health care providers and caregivers.
• Improve quantitative performance measures
• Meet Meaningful Use objectives

3. Payers (Private Insurance, Medicare, Medicaid, Veteran’s Affairs, Employers)

• Reduce overall healthcare cost

• Evidence-based practices and functional requirements for the TBI Care Unit

Therapies for people with PD include pharmacological treatments, surgical treatments and “non-pharmacological” treatments such as physical therapy and acupuncture.  Evidence-based practices are limited to pharmacological and surgical treatments.  Research is insufficient to support evidence-based practice recommendations for non-pharmacological treatments.  

Functional requirements

Online Pain and Symptom Assessments

One of the challenges faced by clinicians is in evaluating the progress of the condition. “Many of the motor-related symptoms are directly observable when the patient is in clinic; while other symptoms or features require direct questioning and follow-up to detect and ascertain. In particular, the onset of symptoms that do not (generally) respond to dopaminergic therapy, such as dementia, dysphagia, falling, gait imbalance, and symptomatic orthostatic hypotension, are milestones of impending disability and increased need for caregiver assistance.”^[3]  This was confirmed in discussions with clinicians who also expressed concern that not enough information is garnered from periodic observation and interviews.  For example, clinicians describe the effect of drugs as resulting in an “on” state, meaning that the drug is effective and the symptoms are managed, or an “off” state, meaning that the effect has either not taken effect or has worn off.  Thus, one functional objective would be to monitor the degree and duration of the patient’s response to medications, and how that duration and degree varies over time.  Results from assessments completed by the patient or caregiver will be included in the dashboards with a graph for visual tracking of changes. Significant results or changes can trigger an alert to the provider or a message to the patient or caregiver about a relevant educational module.

Automated motor function tracking

With the increased popularity of activity trackers such as those by Fitbit, Garmin or Apple, there is an emerging opportunity to capture information about motor function, including range of motion, speed and tremor.  Such information, once correlated with other traditional diagnostic assessments, may provide a continuous monitoring capability that could be immensely valuable for patients, clinicians and pharmacologists.

Medication adherence

The medication regimen can be quite complex for patients with Parkinson’s disease.  As patients experience cognitive impairment and, possibly, dementia, medication adherence becomes increasingly difficult for both the patient and caregivers.  A system may include gentle cell phone reminders and a method for easily indicating that the medication or treatment has been satisfied.  A notification system with appropriate escalation will inform the appropriate people when exceptions or problems reach a defined threshold.

Medication Reconciliation

Because PD patients may be disbursed across a wide geography with infrequent access to their specialists and receive much of their symptom care from primary care physicians and others who may not be as close to the PD team, medication reconciliation is expected to be a key part of this Project.  It is anticipated that the system will manage information from various clinical and non-clinical sources including the State Health Information Network of New York (SHI-NY).  

Education

Provide on-demand and customizable education choices including text, audio, video, and self-paced presentations, in order to educate patients and caregivers about Parkinson’s disease, medication, self-management of symptoms and home care. 

Personal and Public Calendars and Reminders

The patient, the PD health care team and unofficial care providers may have access to both a personal and public calendar and reminder system. The scope of calendar entries could range from appointments, to medication adherence, to responding to online or text-based queries.  (It is expected that this would integrate with existing provider calendar systems, not be in addition to them)

Patient/Caregiver Dashboard

Patient/caregiver dashboard refers to the landing page where the patient or his/her designated caregivers can quickly grasp the important information about an individual patient and manage the most frequent tasks. The patient dashboard shows a patient’s status (such as a distress thermometer), incoming email, alerts and reminders, highest priority actions to take, and progress toward rewards.

Clinician Dashboards

Clinician dashboards refer to the landing pages where clinicians (typically staff) can quickly grasp the important information about either an individual patient or a population of patients. The clinician dashboard gives a snapshot of actions that need to be taken in order of priority.  Clinicians, patients, and caregivers can view status reports and historical symptom summaries to monitor the changes.

Social Forum

The system allows providers to offer a secure, moderated online social forum for both patients and caregivers. The social forum would encourage patient engagement and offer one avenue to help with patient and caregiver emotional distress through connecting with others who have an understanding of the challenges of living and coping with severe, life-limiting illnesses.

Public Resources

Provide directory of community resources and services for assistance across all aspects of PD care including spiritual support, psychological counseling, and financial issues. 

Goals and Rewards

This feature is included to give patients and caregivers a sense of control and to engage providers. Rewards could include both visual recognition in the system and possibly some form of tangible reward that may be earned. 

Administrative Functions

The administrative functions of the system will enroll patients and their authorized caregiver(s); configure communication options and preferences for providers, patients and caregivers; create an address book with each patient’s providers and caregivers; and set up rewards and incentives for patients, caregivers and providers.

• Possible barriers to the adoption of the PD Care Unit

The platform for the PD Care Unit must be easy to use while providing valuable information to all stakeholders, clinicians, patients, caregivers.  Possible barriers include :

• Technology access (computer, mobile, phone, and internet access) particularly for the homeless and those with unstable housing.
• Technology literacy or decreased ability to use technology due to illness.
• Difficulty completing or consistently using the technology, particularly associated with certain mental health conditions.
• Preference for personal interaction and communication, such as a preference to come to the clinic as a primary social activity.
• Incorporation of technology and new processes into clinician workflow.

Any patient relationship management platform must be able to meet the needs of people of all geographic and socio-economic backgrounds, particularly traditionally under-served patients. For example, a study of a group of impoverished African American women, who had not previously been able to access information or support, had positive experiences with the use of an in-home computer system (McTavish, et al., 1994). Additionally, there is an opportunity to study the cost benefit of providing a smartphones and activity trackers with applications specifically designed for people with PD.

• Metrics for evaluating the PD Care Unit

Metrics will be developed by the collaborators.  Following are some of the possible areas that could be evaluated:

• Symptom / quality of life scores (HRQOL surveys)
• The length of time between hospital admissions
• The number of ER visits and inpatient admissions per patient
• The ratio of patients to provider served by the PD clinic
• The number of patients referred to the PD clinic
• The average number of months/years a patient is served by the PD clinic
• The average cost per patient served per month/year
• Utilization of the patient relationship management system
• Patient and caregiver satisfaction surveys
• Palliative care clinic staff satisfaction survey
• Financial implications of the PD Care Unit

Overall, the annual economic impact of PD in the United States is estimated at $10.8 billion, 58% of which is related to direct medical costs. Annual direct medical costs per patient with PD are estimated to be between $10,043 and $12,491, more than double that of patients without the disease.5,6 Prescription drugs account for approximately 14% to 22% of costs, with nursing home care the largest component at approximately 41%. Annual indirect costs, including lost workdays for patients and caregivers, are estimated at $9,135.

Given the growing elderly population in the United States, the number of individuals with PD is expected to double by 2030. Such an increase will place a significant burden on healthcare systems and caregivers given the progressive nature of PD, associated disability, and significant caregiving required in the later stages of the disease. Without research, it is impossible to estimate the effect on health status or cost.  

Conclusions

Patients, families and providers face tremendous challenges in helping someone with Parkinson’s disease.  Emerging Internet and mobile technologies present an important opportunity to improve outcomes and lower cost while supporting research.  Traditional patient portals and personal health records are not designed to meet these objectives.  This Parkinson’s Disease Care Unit Analysis is the first step to designing, implementing and refining a more effective solution that may show significant improvement for all stakeholders. 

[1] Chen, Jack J PharmD.  Parkinson’s Disease: Health-Related Quality of Life, Economic Cost, and Implications of Early Treatment, American Journal of Managed Care,  http://www.ajmc.com/publications/supplement/2010/a280_10mar_parkinsons/a280_10mar_chen/1#sthash.fdR9FYD3.dpuf, accessed 2013-05-05

[2] de Lau LM, Breteler MM. Epidemiology of Parkinson’s disease. Lancet Neurol. 2006;5(6):525-535. – See more at: http://www.ajmc.com/publications/supplement/2010/a280_10mar_parkinsons/a280_10mar_chen/5#sthash.hHtYVHAv.dpuf

[3] Jack J. Chen (2012) Parkinson disease: A summary of recent evidence-based medicine reviews. Mental Health Clinician: August 2012, Vol. 2, No. 2, pp. 25-31.