Dr. Terpstra lecturing at the University of Helsinki

Dr. Terpstra lecturing at the University of Helsinki

It is well established that exercise training directed towards a specific symptom of PD is an effective, complementary intervention to the traditional medical management of PD symptoms. Specifically, targeted exercise is effective in improving the targeted deficit. Furthermore, comprehensive exercise programs combining several scientifically proven modes of exercise have been shown to result in clinically meaningful benefits, as measured by the Unified Parkinson’s Disease Rating Scale. Although substantial evidence supports the use of symptom-specific exercise programs for PD, this intervention has not been implemented on a wide scale. Substantial obstacles prevent many PD patients from receiving symptom-specific exercise training. First, targeted training for gait and balance can only be safely performed in the presence of an exercise professional. Second, effective cognitive rehabilitation requires errorless learning during complex cognitive tasks. This can only take place under close supervision. Since insurance companies and Medicare cover a limited amount of physical rehabilitation each year, targeted training requires a monetary investment that the majority of patients are unable to make. Since properly structured comprehensive exercise programs have been proven to be safe and effective in improving symptoms in people living with PD, the primary barrier to people with PD receiving long-term rehabilitation is that therapy administered by highly paid Physical Therapists is cost-prohibitive in the eyes of the insurance industry. Our preliminary data shows that rehabilitation specialists who do not come with the high cost of advanced college degrees can administer highly effective rehabilitation.  

Preliminary Studies

The Motor Symptoms of PD Improve Following Twelve Weeks of Rehabilitation

Five participants in our pilot program at the YMCA with advanced PD (motor Unified Parkinson’s Disease Rating Scale (UPDRS) >35) consented to be evaluated for “off” motor UPDRS scores prior to and every twelve weeks after beginning the program. Patients arrived at the clinic 12-15 hours following the last dose of their PD medicine (defined “off” state). The assessment was performed immediately upon their arrival so that they could resume their scheduled medicines as soon as possible. Undergraduate intern Timothy Kemme administered all rehabilitation sessions, after Dr. Terpstra trained Mr. Kemme for two months. Following 12 weeks of participation in our rehabilitation program, patients demonstrated an improvement in “off” motor UPDRS scores. Furthermore, after 24-weeks,all patients maintained their initial improvement the “off” motor UPDRS score. These improvements indicate that this rehabilitation strategy has the ability to modify the underlying disease process in PD. This result is especially meaningful in patients with advanced disease. As PD progresses, the duration of symptomatic relief following the administration of symptomatic drugs drastically decreases resulting in patients spending a substantial portion of their day in the “off” state. Therefore, improvements in “off” motor scores can have a large positive effect on the quality of life in advanced patients. In clinical studies examining PD a five-point change in the UPDRS score is considered clinically meaningful. The patients in our pilot program showed an average improvement of 11.3 in “off” motor UPDRS scores following 12 weeks of individualized rehabilitation. These results show that individuals can effectively conduct rehabilitation for PD without a formal degree in a rehabilitation science. In addition to these five patients, seven other higher functioning non-research patients also participate in our pilot program. Of these 12 patients three have participated in the program for greater than two years and the program boasts a 91% retention rate. These results show the long-term utility of our rehabilitation strategy.

PDRI Research

Future Research

The annual direct medical cost of PD, which is comprised primarily of doctor office visits, hospitalizations, and pharmaceuticals, was calculated at $23,101 per patient ($12,000 more than healthy controls). Although a direct correlation to cost has not been demonstrated, these patients have a higher rate of falls, fractures, and lacerations that likely contribute to the increased cost.  This higher rate of injuries is likely due to the motor and cognitive impairments associated with PD.  While it cannot be directly measured it is believed that indirect cost resulting from loss of productivity is estimated to be $25,000 annually, further compounding the economic burden of PD on patients, caregivers and society. We believe that improving the symptoms of PD will reduce medical costs.

Although developing a long-term rehabilitation institute in Cincinnati solely dedicated to improving the lives of people with PD is an impressive and noble endeavor, a single center can only help a fraction of the nation’s PD patients. In order to increase access to long-term rehabilitation for people with PD, a cost effective business model must be developed. Successfully developing such a model, without imposing a financial burden on people with PD, cannot be achieved without the participation of the insurance industry. Traditionally, rehabilitation for neurological conditions has been viewed as a service that can only be provided by highly educated and highly compensated Physical Therapists. The field of PT was created around the rehabilitation of acute orthopedic injuries. Since these injuries can be “cured” either by PT or a combination of surgery and PT, rehabilitation of these injuries is a short-term process. Due to the acute nature of these injuries, the high hourly cost of PT does not become cost-prohibited from the perspective of the insurance companies. However, this is not the case for PD.  Regardless of the effectiveness of a rehabilitation program for PD, if therapy is discontinued, patients will regress. Therefore, to be effective, rehabilitation must be a lifelong endeavor.  Considering the high cost of rehabilitation administered by Physical Therapists, it is nearly impossible to utilize these professionals in a cost effective manner for the duration of the disease. Rehabilitation for PD administered by rehabilitation specialists without a graduate degree represents a potential long-term alternative to conventional PT. To that end, the future research objective of the institute will demonstrate the effectiveness and cost-benefit of individualized rehabilitation administered to people with PD by individuals with two months of training as opposed to 8-10 years of higher education. We hypothesize that utilizing this type of “therapist”, in a setting that is not directly linked with a major institution, is a cost effective approach. Furthermore, in order to validate this approach, it is essential that this research take place independent of any major hospital or university system. This will allow us to prove that our business model can exist anywhere throughout the nation, regardless of any pre-existing infrastructure. Similar data has resulted in United Healthcare covering a long-term program for diabetes at YMCA’s nationwide. We will approach United Healthcare with our data to seek for similar coverage for people with PD. The results of the this research will have the potential to assist people with PD in overcoming the cost barriers to long-term rehabilitation by providing incentive for the insurance industry to provided coverage for this treatment.