In the past, therapy was limited to pure care. The progressive death of nerve cells and the associated lack of the important messenger substance dopamine in the brain increasingly restricted the mobility of Parkinson’s patients without being able to intervene effectively in this unstoppable process. Although the everyday life of those affected is still impaired in many ways as their disease progresses due to the characteristic stiffness of the joints and the noticeable tremors, treatment in the 1960s with drugs that compensate for the dopamine deficiency made a big breakthrough Experienced. In addition, additional preparations have recently become available that can be used to slow down the progression of cell death. Recently, a surgical procedure has been added, in which a tiny probe that can be controlled from the outside is implanted in the brain, through which severe tremors can be suppressed to a large extent.
However, direct conclusions about the personal well-being of the patients cannot be drawn easily due to these therapeutic advances. Whether or to what extent medically measurable criteria have an influence on the quality of life is best for those affected to judge for themselves. The assessment of the doctors and that of the patients can differ widely, emphasizes Dr. Klaus Berger from the Institute for Epidemiology and Social Medicine at the University of Münster. Since autumn of last year, the neurologist and neuroepidemiologist has been leading the first scientific study on the quality of life of Parkinson’s patients, defining quality of life as a self-perceived state of health. In particular, the study carried out in the Parkinson’s outpatient clinics of ten German university clinics is intended to provide information about the factors that influence the quality of life from the point of view of those affected. Such results could not only be an important basis for the best possible advice and treatment of future patients. Rather, they could also be relevant to health policy by providing solid data that can be used to underpin the need for certain measures, such as physiotherapy, against the background of the current austerity measures.
Since the occurrence of symptoms and the well-being of patients often fluctuates over the course of their illness, the study is not intended to provide just a snapshot. In order to get a more reliable picture, the participants are interviewed again after the first survey six months later and then again after another six months. This data collection is carried out with the help of an extensive questionnaire, which the 210 study participants aged between 41 and 84 fill out in the waiting rooms of the outpatient clinics nationwide. In order to be able to correlate this self-assessment with medical findings, the use of outpatient services and possible burdens on the family, the treating physicians and relatives of the patients also receive a questionnaire specially tailored to them.
The aim of the study is to determine the influence of disease-specific factors such as tremors or stiffness, the possible impact of outpatient services such as meals on wheels, physiotherapy or self-help groups, the presence of other diseases and the influence of medication on the quality of life of Parkinson’s patients. For example, Berger assumes that patients for whom tremor is the primary symptom of their illness attach significantly greater importance to disease-specific factors than patients who primarily suffer from joint stiffness. Since the tremors are evident in many everyday situations, such as eating or signing, Berger assumes that these patients have greater psycho-social problems and tend to feel stigmatized.
When examining the influence of the medication, the head of the study is concerned with finding out, against the background of today’s usual combination treatment with several preparations, whether, for example, a combination of two or four medications causes differences in the self-perceived state of health. Particular importance is attached to the influence of outpatient services. If it turns out, for example, that a patient with objectively severe symptoms who uses certain outpatient services feels a higher quality of life than a patient with mild symptoms who does not use these services, this could, according to Berger, be relevant for the further procedure the care of Parkinson’s patients.
Despite all the advances in immediate medical treatment and the increased focus on quality of life that became clear as a result of the study, the diagnosis of Parkinson’s disease is still a deep turning point in life to date. Three to four percent of all people over the age of 70 are affected by this neurodegenerative disease. Due to increased early detection, the numbers are increasing, and the diagnosis is increasingly affecting younger people. According to Berger, within the framework of the nationwide self-help association, there are already so-called U-40 clubs, in which patients under the age of 40 have joined forces.
Against this background, too, great importance is attached to the study on quality of life sponsored by the Wilhelm Woort Foundation for Aging Research and a pharmaceutical company. So did Dr. Klaus Berger recently received the first research award of the Hilde Ulrichs Foundation for Parkinson’s research before the final evaluation of the study, the results of which should be available in the summer of next year.