What about a coordinated care program for patients with Parkinson's disease?

Thanks to medical advances, people with Parkinson's disease can be treated more and more effectively. Modern therapies make it possible to control the symptoms of the disease for a long time, although early treatment is a prerequisite for success. In Poland, access to pharmacotherapy for Parkinson's disease is good, the organization of care for these patients is much worse. Patients, especially those in advanced stages of the disease, absolutely require multidisciplinary care, and there is a big problem with this. Patients wander through the system - from one specialist to another. The solution, beneficial to both the patient, the caregiver and the system, would be coordinated care. Unfortunately, although a pilot program for such care was developed as early as May 2023, it has yet to come into effect. Will the upcoming year 2025 bring the much-anticipated implementation by patients and doctors?

Parkinson's disease is a neurodegenerative disease, and the underlying cause is the death of nerve cells in the brain's black matter, responsible for the production of dopamine. As the disease progresses, changes in the brain intensify, resulting in cognitive impairment of motor dysfunction. In the advanced stage of the disease, the patient has difficulty performing daily activities such as washing, eating, dressing and moving around. Around-the-clock assistance and care from others becomes necessary. In Poland, Parkinson's disease is diagnosed in almost 8,000 people each year, and more than 90,000 people already suffer from the disease. It is estimated that about 20% of patients have the disease in an advanced stage. Men are slightly more often affected, especially after the age of 60. Unfortunately, it is increasingly common for the disease to be diagnosed in younger people - in their 40s and even 30s.

Although Parkinson's disease does not significantly shorten life expectancy, it significantly affects quality of life. In order to maintain a good quality of life, it is extremely important to start symptomatic treatment early in the course of the disease. This treatment involves, among other things, supplementing and counteracting dopamine deficiencies. "The public is increasingly aware that neurodegenerative diseases, such as Parkinson's disease, among others, we can treat well, or are able to control their symptoms well. As a result, patients are coming to the doctor earlier and many young patients with Parkinson's disease remain active and function well in society for a long time. However, the patient has to take medication even several times a day, sometimes several preparations at the same time. At the beginning of treatment, patients usually observe the beneficial effect of these drugs throughout the day. However, the disease progresses and the drugs have a shorter and shorter effect. Symptoms of the disease, such as tremors, slowed movements or problems walking, may appear before the patient takes another dose of the medication. Thanks to effective dialogue between neurologists, patients and the Minister of Health, Polish patients with advanced Parkinson's disease have had reimbursement access to infusion therapies under the B.90 drug program for the past seven years, and with this year's update of that program, all therapeutic options available in Europe and around the world are covered. This is a huge benefit for both patients struggling with this difficult condition and their caregivers. Unfortunately, there are still patients in Poland who, because of where they live, have difficult access to modern therapies. This is due to the insufficient number of specialists treating Parkinson's disease, which translates into a small number of specialized centers and waiting queues. Currently, the B.90 program is implemented by only 20 facilities nationwide. Patients struggling with advanced Parkinson's disease are mostly elderly, not fully functional, and require caregiver support. Therefore, it is important that they have access to therapy as close to their place of residence as possible," says Wojciech Machajek, president of the Brain Disease Foundation.

When drug treatment becomes insufficient, patients may also be offered surgical treatment. Such a method is deep brain stimulation (DBS), which involves the implantation of electrodes that silence the work of those areas in the brain that are excessively active in Parkinson's disease. In Poland, there are approx. 15 centers implanting DBS. This is quite a serious procedure and an expensive one. That's why it's so important that patients are properly qualified for it, and currently this is not always the case. It should be remembered that just implanting the electrodes is not enough, the device still needs to be properly programmed, and then the patient needs to be monitored, i.e. conduct the so-called service. Unfortunately, there are too few neurologists who are involved in the setting of DBS, because it is a lengthy and skill-intensive activity, plus it is not priced or reimbursed by the National Health Service (unlike the adjustment of pacemakers). As a result, people with DBS are forced to use private services, which should not be the case, " Wojciech Machajek stresses.

The biggest issue is the organization of patient care. "In the treatment of Parkinson's disease, which is a multidisciplinary disease, the cooperation of many specialists is necessary - including a neurologist, psychiatrist, psychologist, speech therapist, nutritionist, physical therapist or behavioral therapy specialist. In advanced disease, complications such as femur fractures are common, urological and cardiovascular problems arise, pressure sores and breathing difficulties develop. Therefore, comprehensive coordinated care is essential. The care of patients with Parkinson's disease should be carried out in selected reference centers and include all elements of therapy, tailored to the different stages of the disease - drug treatment, surgical treatment and specialized, comprehensive rehabilitation. A coordinated specialty care (KOS) program would be the best form of treatment for Parkinson's disease patients in terms of pharmacoeconomics. Such integrated care would also be of tremendous benefit to patients who are currently wandering in the healthcare system," explains Wojciech Machajek.

At the beginning of 2023, the health ministry commissioned the Agency for Health Technology Assessment and Tarification to develop a pilot of such a program with a valuation of the benefit. Intensive work has begun, with extensive involvement of neurology experts and representatives of the patient community. Thanks to the record pace of activity, the pilot project of comprehensive care for patients with Parkinson's disease, worked out to the smallest detail, was ready May 2023. The pilot was supposed to start in autumn 2023 and cover the provinces of Pomerania, Mazovia and Lower Silesia. However, this did not happen.

"We very much hope that the Minister of Health and the President of the National Health Fund will implement this much-needed solution for patients in the coming year, because patients with Parkinson's disease can no longer wait. We are counting on the establishment of the Parliamentary Group for Diseases of the Central Nervous System in the Polish Parliament to be an important step in building dialogue between all stakeholders, leading to necessary systemic changes in the treatment of neurological diseases," Wojciech Machajek concludes.

Source: press mat.