We Take Care of Your Care
Better care with a powerful network of experts and patients
We Take Care of Your Care
Better care with a powerful network of experts and patients
We Take Care of Your Care
Better care with a powerful network of experts and patients
What does APST deliver?
Personal coordinators
They facilitate the provision of suitable treatments, assistive devices and care services to you.
Concerted care
To meet your individual care needs we connect specialized therapists, medical supply and equipment stores, care institutions and doctors.
Transparency in documentation
Follow online all the information relevant to your care exchanged between supply partners, medical partners and patients.
Patientenbewertungen
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Cough assistants in ALS: study demonstrates high satisfaction and daily use
For people with amyotrophic lateral sclerosis (ALS), so-called cough assistants are available to treat a weak cough. Three benefits can be achieved with a cough assistant:
1.) A physiotherapy of the rib muscles and ...
Survey on the use of health data and securing privacy at APST.
The Westfälische Wilhelms-Universität Münster and the Freie Universität Berlin conduct a survey in cooperation with APST on the topic of "Use of health data and securing privacy".
read more
Recognizing therapy effects in face and speech of ALS patients via the ALS app
APST is introducing digital speech and facial expression analysis via the ALS app in a model project. The analysis of speech and facial expressions in amyotrophic lateral sclerosis (ALS) is useful because the speech and facial muscles are affected during ...
read more"I think it’s very handy to be able to view all the relevant information online so we don’t create that usual pile of paperwork. The care process circuit within the network seems to work perfectly. My impression is that all the different health care providers are competent, friendly and always keen on making life a little easier for me. I have not been disappointed by Ambulanzpartner and would recommend them any time.”
Katrin F., participant APST"To me, getting support from APST means saving a lot of time and effort, especially when it comes to the provision of assistive devices. All I need to do is make a call or write an email and they get working behind the scenes, filling in the application to the health insurance company, informing the medical supply and equipment store, etc. They organize everything for me until I get my device. I’m very happy with this procedure and can unreservedly recommend this to other patients.”
Roland D., participant APST"Thank you ever so much from the bottom of our hearts for the good team work […]. Working hand in hand like this is quite something! It makes life a lot easier for patients and their families. Each call we made meant that I was given help swiftly and without any fuss."
Birgit und Werner I., participant APST"All it takes is one phone call or email and we get competent advice on which assistive devices are most suitable for us. The prescription goes to the health insurance companies direct and the respective medical supply and equipment store is asked to get in touch with us. This is such a relief in terms of time, considering the thick jungle of bureaucracy one normally has to face. All in one hand!"
Dorothea und Anouschka G., participants APST"Going via APST means there are competent and helpful people by my side. I can always rely on APST to get my medication delivered, apply for a communication aid or get a good speech therapist recommended."
Lilo C., participant APSTThis is how APST works
Service telephone
Activity count
Patienten:
Versorgungen:
Care network and patient ratings
As part of our care network services, we provide patients and their relatives with web-based rating tools to assess assistive devices, medication, therapies, providers, therapists and physicians. Thus, APST facilitates the capturing of the patients’ individual needs before, during and after medical therapy. Patients are offered compact, structured questionnaires. Typical topics for rating are patient satisfaction with the care provided, satisfaction with and without medication, or individual symptoms, such as dysphagia or pain. By giving their feedback “online”, patients play a more active part within the Ambulanzpartner care network. The results are published as anonymized aggregates on the APST platform. Participation is subject to the following applicable rules:
Real data
Patients can only rate the very care provision and therapies they have actually received.
Verified criteria ratings
Patients can only rate care provision according to scientifically defined and verified criteria.
Constructive ratings
Ratings must comply with the principles of matter-of-factness and appropriateness.
Physiotherapy, occupational therapy, speech therapy
In severe or rare neurological disorders, the demand for specialized physiotherapy, occupational therapy and speech therapy is high. The therapy facilities listed on our network website have special expertise in the treatment of neurological patients. Patients rated the therapy facilities incorporated in our network as follows:
* Berlin and Brandenburg areas only
Medical supply and equipment stores and assistive devices providers
Assistive devices are carefully chosen and rendered to meet the personal needs of patients and their relatives. Following the principle of “as little as possible, as much as necessary”, assistive devices provision is guided by the patient’s individual disease course. Mapping out an individual concept of assistive devices provision for each patient is a key element of specialized patient care. Patients rated the medical supply and equipment stores incorporated in our network as follows:
Home care and special care homes
APST supports patients and their relatives in their search for specialized care. We host a network of care facilities offering specialized outpatient, inpatient, (semi-) residential or day care as well as ventilator care. The listed institutions and services are specialized in care for patients with Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Parkinson’s Disease and stroke. Care providers were rated as follows
* Berlin and Brandenburg area only
Physicians (m/f), medical practices and outpatient clinics/departments
Due to the high complexity of severe neurological disorders it makes sense for physicians and care teams to complete a specialization in these medical fields. Our nationwide network comprises highly specialized neurological outpatient clinics/departments and medical practices. Physicians use APST to liaise with other medical professionals, perform data based research projects and enhance digital networking. Patients and relatives rated consultation with physicians as follows:
Pharmacies
APST cooperates with specialty pharmacies offering a hotline for patients registered on our care network. All patients, relatives, care teams and physicians may use this telephone service to get advice on the drug treatment regime(s) in place. Contact persons are pharmacists who have expertise in the medication for our neurological patients. Patients rated the pharmacies as follows:
Nutrition Therapists (m/f)
Individual nutrition support can be facilitated for the patient group signed up on APST thanks to the expertise our partner nutrition therapists possess. On the internet portal, patients, relatives and physicians may access an electronic patient record (EPR) that gives an overview of past and current nutrition therapies. Patients may rate their nutrition therapists:
Hilfsmittel
Die Hilfsmittelversorgung gehört zu den wichtigsten Maßnahmen, um Menschen mit komplexen neurologischen Erkrankungen ein hohes Maß an sozialer Teilhabe zu ermöglichen. Motorische Einschränkungen erfordern eine individuelle Unterstützung durch medizin-technische Hilfen. Sie stärken bestehende Funktionen, unterstützen die geschwächte Muskulatur oder gleichen verloren gegangene Muskelfunktionen aus. Patienten und Angehörige können ihre Hilfsmittel bewerten.
Heilmittel
Heilmittel sind ein wichtiger Bestandteil in der Behandlung neurologischer Erkrankungen. Zu den Heilmittel gehören die Physiotherapie, die Ergotherapie und die Logopädie. Mit einer Physiotherapie werden Muskelgruppen aktiviert und die Folgen der neurologisch bedingten Kraftminderung reduziert. Die Ergotherapie dient der Stärkung, Aufrechterhaltung oder Kompensation feinmotorischer Leistungen. Unter der Logopädie werden Therapieverfahren für Menschen mit Sprach-, Sprech- und Schluckstörungen zusammengefasst.
Medikamente
Ein zentraler Bestandteil von neurologischen Therapien ist die Medikamentenbehandlung. Auf unserem Portal haben Patienten, Angehörige und Ärzte die Möglichkeit, eine Übersicht der aktuellen sowie der zurückliegenden Medikation in Form eines elektronischen Medikationsplans nachzuvollziehen. Mit dem elektronischen Medikationsplan tragen wir dazu bei, die Arzneimittelsicherheit und Therapietreue zu erhöhen. Patienten können ihre Medikation bewerten:
Ernährungshilfen
Eine defizitäre Ernährung sowie ein unerwünschter Gewichtsverlust sind Begleitsymptome oder Folge verschiedener neurologischer Erkrankungen. Die Behandlung umfasst eine Ernährungsberatung, eine Nahrungsergänzung durch hochkalorische Ernährungslösungen (Trinknahrung) oder eine künstliche Ernährung über eine Magensonde (Sondennahrung). Wir bieten für das spezialisierte Ernährungsmanagement eine moderne Organisationsstruktur an. Ernährungshilfen können bewertet werden:
Health insurance companies
APST works independently of health insurance companies, and access to the platform is available for both patients with public and private health insurance cover. The degree of quality of service and patient focus varies substantially among health insurers. For instance, the time allowed to process prescriptions or to approve assistive devices and rehabilitation measures can be quite different depending on which company you are dealing with. Patients may rate their satisfaction with their health insurance company:
APST care network
In health care processes, Managed Care is the term used to describe the support given to patients in their search for suitable suppliers and care professionals and the assistance they receive in tasks of administrative and organizational nature. Ambulanzpartner is specialized in managed care for patients with complex neurological disorders. We get active when it comes to organizing the provision of specialized assistive technology, ventilation or medication therapy and other support required.
Care data
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.
You are given independent information from real-world care settings
The lives of patients and their relatives are made easier with the knowledge on diseases and their treatment gained through this procedure.
We show suitable approaches towards good treatment and care.
Our data analysis enables us to identify your individual provision with high-end medication, treatments and assistive devices.
Researchers can develop the treatments and aids of tomorrow.
Treatment data are employed to develop new assistive devices and aids, therapy variants or medication in the future.
Amyotrophic lateral sclerosis (ALS)
What is ALS?
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.
People with ALS in the APST Network
Who are the people living with ALS in Germany?
Current age
Gender
Age at onset of initial symptoms
Place of residence
Patienten:
View detailed map
For more information, please hover the mouse over the region.
Source: APST from 2011 until today
Treatment of people with Amyotrophic Lateral Sclerosis
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..
Medication
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.
Therapies
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.
Assistive Technology and Devices
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.
Nutritional support
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).
Amyotrophic Lateral Sclerosis Functional Rating Scale revised (ALSFRSr)
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
ALS centers in the APST 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.
Alfried Krupp Krankenhaus - Outpatient Department for ALS and Other Motor Neuron Diseases
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 45131 Essen | |
| Street | Alfried-Krupp-Straße 21 | |
| Phone | 0201-434 41529 |
Charité Berlin - Outpatient Department for ALS and Other Motor Neuron Diseases
| Federal County/Germany | Berlin | |
| City | 13353 Berlin | |
| Street | Augustenburger Platz 1 | |
| Phone | 030-450 560132 |
Diakonissenkrankenhaus Mannheim - Consultation Clinic for ALS
| Federal County/Germany | Baden-Wuerttemberg | |
| City | 68163 Mannheim | |
| Street | Speyerer Straße 91 - 93 | |
| Phone | 0621-8102 0 |
Medizinische Hochschule Hannover - Outpatient Department for ALS and Other Muscle Diseases
| Federal County/Germany | Lower Saxony | |
| City | 30625 Hannover | |
| Street | Carl-Neuberg-Straße 1 | |
| Phone | 0511-532 8848 |
Universitätsklinikum Bergmannsheil - Outpatient Department for ALS
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 44789 Bochum | |
| Street | Bürkle-de-la-Camp-Platz 1 | |
| Phone | 0234-302-6812 |
Universitätsklinikum Bonn - Clinic for Neurodegenerative Diseases
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 53127 Bonn | |
| Street | Sigmund-Freud-Straße 25 | |
| Phone | 0228-287 0 |
Universitätsklinikum Carl Gustav Carus Dresden - Outpatient Department for Motor Neuron Diseases
| Federal County/Germany | Saxony | |
| City | 01307 Dresden | |
| Street | Fetscherstraße 74 | |
| Phone | 0341-458 3876 |
Universitätsklinikum Halle (Saale) - Neurology Outpatient Department
| Federal County/Germany | Saxony-Anhalt | |
| City | 06097 Halle (Saale) | |
| Street | Ernst-Grube-Straße 40 | |
| Phone | 0345-557 31 76 |
Universitätsklinikum Jena - Outpatient Department for Neuromuscular and Motor Neuron Diseases
| Federal County/Germany | Thuringia | |
| City | 07747 Jena | |
| Street | Erlanger Allee 101 | |
| Phone | 03641-932 3450 |
Universitätsklinikum Leipzig - Outpatient Department for Muscular Diseases
| Federal County/Germany | Saxony | |
| City | 04103 Leipzig | |
| Street | Liebigstraße 20 | |
| Phone | 0341-97 109 |
Universitätsklinikum Münster - Outpatient Department for Neuromuscular Diseases
| Federal County/Germany | North-Rhine-Westphalia | |
| City | 48149 Münster | |
| Street | Albert-Schweitzer-Campus 1 | |
| Phone | 0251-83 474 94 |
Universitätsklinikum Ulm - Outpatient Department for ALS
| Federal County/Germany | Baden-Wuerttemberg | |
| City | 89081 Ulm | |
| Street | Oberer Eselsberg 45 | |
| Phone | 0731-500 63003 |
Universitätsmedizin Göttingen - Outpatient Department for ALS
| Federal County/Germany | Lower Saxony | |
| City | 37075 Göttingen | |
| Street | Rober-Koch-Straße 40 | |
| Phone | 0551-39 65 287 |
Research and projects on Amyotrophic Lateral Sclerosis in our network
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.
Robotics-enhanced services in the care of people with Amyotrophic Lateral Sclerosis
| Project | Robotics-enhanced services for individual and resource-oriented intensive and palliative care in people with ALS (ROBINA) | |
| Supported by | Bundesministerium für Bildung und Forschung (German Federal Ministry of Education and Research) | |
| Subject | This project investigates the relief experienced in assistive and therapeutic care using robotics as well as the linking of robotics with nursing and care in people with ALS. | |
| Target group | People with ALS and their need for intensive and palliative care | |
| Link | http://www.projekt-robina.de |
Dysphagia and intake of tablets in Amyotrophic Lateral Sclerosis
| Project | Needs analysis in ALS | |
| Sponsor | Desitin Arzneimittel GmbH | |
| Subject | General and special needs of ALS-patients with dysphagia. An interview with patients on dysphagia in people with ALS. | |
| Target group | Patients with ALS and dysphagia | |
| Link | https://www.ambulanzpartner.de/schluckstoerung-und-tabletteneinnahme-als/ |
Treatment of spasticity in Amyotrophic Lateral Sclerosis
| Project | Register study capturing the treatment of spasticity in an inter-cohort comparison of patients with Amyotrophic Lateral Sclerosis. | |
| Sponsor | Almirall Hermal GmbH | |
| Subject | In this project, pseudonymized and aggregated data on the collection, analysis and assessment of current care pathways, routine data and care standards in the treatment of spasticity in ALS are analyzed. The project is set out to develop or enhance medication for the treatment of spasticity in ALS. | |
| Target group | Patients with ALS and spasticity | |
| Link | https://www.ambulanzpartner.de/nabiximols-amyotrophe-lateralsklerose/ |
Provision of assistive devices in Amyotrophic Lateral Sclerosis
| Project | Provision of Assistive Devices in ALS | |
| Sponsor | Ambulanzpartner Soziotechnologie GmbH | |
| Inhalt | This project is designed to analyze the provision of assistive devices to patients in a real-world setting. The objective is to define treatment standards for the provision of assistive devices in ALS. | |
| Target group | Patients with ALS | |
| Link | https://link.springer.com/article/10.1007%2Fs00115-015-4398-2 |