We would like to share the care data collected in our network with those affected by severe neurological diseases and those interested in our endeavors in order to gain new insights. Care data are captured via our internet portal, analyzed and then depicted hereon as anonymized pooled data. Patients have previously given their consent to having their data anonymized and published. The analysis and publication of care data is our way of contributing to answering any outstanding questions on the treatment and management of patients with chronic neurological conditions and thus enhancing the care they receive.
The lives of patients and their relatives are made easier with the knowledge on diseases and their treatment gained through this procedure.
Our data analysis enables us to identify your individual provision with high-end medication, treatments and assistive devices.
Treatment data are employed to develop new assistive devices and aids, therapy variants or medication in the future.
Amyotrophic Lateral Sclerosis (ALS) is a severe disorder of the motor nervous system. In ALS, motor nerve cells that control voluntary muscle movement progressively lose functionality. In people with ALS, the breakdown of nerve cells (neurodegeneration) primarily presents as loss of strength and muscle weakness, muscle dystrophy or stiffness. As a result, patients increasingly experience difficulty moving the affected parts of the body, such as hands, arms, legs and chest or tongue, as the disease progresses. In later stages of the disease, complete paralysis of the skeletal musculature may set in. For these reasons, ALS is among the most severe human diseases. There is no cure for ALS; however, treatment can alleviate associated symptoms.
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Source: APST from 2011 until today
As of date, there is no cure for ALS. However, various treatment options effect a slowing of symptom progression and alleviation of current symptoms. Since 2011, treatment data have been captured and analyzed on APST. The Net Promoter Score (NPS) is employed to measure patient satisfaction. The NPS is a coefficient quantifying patient satisfaction and their readiness to recommend treatments, services etc..
So far, riluzole is the only drug approved for the treatment of ALS in Germany. It moderately slows disease progression. In May 2017, the American Food and Drug Administration (FDA) approved the drug edaravone for the treatment of ALS. Thus, in the USA there now is a second pharmacological treatment option for ALS. In Germany, treatment with edaravone is administered in the absence of approval by the European Medicines Agency (EMA) and the decision to use it is made on an individual basis. In addition to riluzole, further medications are employed to alleviate or control a variety of burdensome symptoms.
Occupational therapy, physiotherapy and speech therapy (therapeutics) are key approaches in the symptomatic treatment of ALS serving to alleviate impairment due to muscle weakness or muscle contraction. With occupational therapy, physiotherapy and speech therapy it is possible to alleviate symptoms and enhance the functionality of muscular movement that patients have preserved to improve motor function and their ability to communicate. The ratings offered here make visible the subjective benefit of the treatment for patients.
The provision of assistive technology and devices is one of the crucial measures taken to enable people with ALS to engage in social activities as much as possible. Over the disease course, motor deficits progress which makes it necessary to support patients individually with medical-technical aids. These assistive devices preserve the patients’ radius of activity. They enhance any functionality still preserved, support the weakened musculature or compensate muscle functionality already lost.
Undesirable weight-loss affects more than 50% of all people with ALS. Weight-loss is crucial as under nutrition and malnutrition may be associated with loss of quality of life or a shorter life span. Nutritional support may be administered naturally, i.e. orally (oral liquid supplements or sip feed nutrition) or via an enteral feeding tube (tube feeds).
The “Amyotrophic Lateral Sclerosis Functional Rating Scale revised“ (ALSFRSr) is a tool serving to capture the patients’ disease status and document the disease course. The ALSFRSr comprises 12 items. A patient’s bulbar symptoms (speech, salivation and swallowing ability), fine motor skills (handwriting, cutting food, getting dressed, seeing to their personal hygiene), gross motor skills (turning in bed, walking, walking the stairs) as well as breathing (respiratory function) are assessed. Patients or physicians rate the question with a score of 0 (= no function) to 4 (= normal function). The maximum total score on the ALSFRSr is 48 score points. The ALSFRSr is captured throughout the course of the disease, usually every quarter. Using the ALSFRSr, patients or the attending physicians may document the disease course online on the APST website.
Distribution of ALSFRSr-scores of people with ALS in the APST care network
As ALS is a relatively rare, progressive and complex disease, it makes sense for outpatient departments, medical practices and doctors’ consultation hours to specialize in this field and liaise with one another via a digital network. Our outpatient departments’ network started in 2010 and has been growing ever since. The network comprises a group of outpatient facilities that are interested in making sure that their ALS patients are well taken care of. The network offers mutual support by exchanging information, performing clinical trials and coordinating their medical expertise.
|Street||Augustenburger Platz 1|
|Street||Speyerer Straße 91 - 93|
|Federal County/Germany||Lower Saxony|
|City||06097 Halle (Saale)|
|Phone||0345-557 31 76|
|Street||Erlanger Allee 101|
|Phone||0251-83 474 94|
|Street||Oberer Eselsberg 45|
|Phone||0551-39 65 287|
Research projects in our network explore whether and how new medications and treatment options stand the test of time in real-life settings. Furthermore, they elucidate how access to the therapy options available can be facilitated. As a result of this care research, medical treatment guidelines and treatment recommendations for the selection, intensity and timing of the optimum employment of medication and special therapies (nutritional therapy, mask ventilation, cough assist, assistive devices, physiotherapy etc.) are devised. Sponsors and supporters of these investigations may comprise universities, pharmaceutical companies, manufactures of medical technologies or expert medical associations.