Telemedical cooperation networks of inpatient and outpatient facilities to improve medical care.
Palliative care for people with neurological diseases is incredibly diverse and experience has shown that it requires a great deal of specialized neurological knowledge. Patients with neurological symptoms or diseases who are cared for by a SAPV team or in a hospice receive access to specialist neurological and neuropalliative care and advice in this project.
The goal is to improve the care of complex neurological problems in palliative patients.
The TANNE Project
The TANNE project is funded by the Innovation Fund of the Joint Federal Committee (GBA) in the subject area: "Telemedical cooperation networks of inpatient and outpatient facilities to improve medical care."
The aim is to ensure professional care for patients with neurological diseases or neurological symptoms in the palliative phase at home or in a hospice.
The project includes a telemedical connection of hospices and specialized outpatient palliative care (SAPV) teams in Bavaria to the neuropalliative telemedicine center Agatharied for the care of patients.
This new form of care will be evaluated multidimensionally. There will be a medical, ethical, legal and social, health economic and technical evaluation of the data and findings obtained during a 24-month study.
The project consists of a 6-month design phase, a 24-month clinical trial and an 8-month evaluation phase. The Federal Joint Committee has made a total of 2.1 million euros available for this project.
Background
The care of neurological patients is still under-established in palliative care. This is in contrast to the increasing numbers of people with neurological diseases who would benefit from palliative care.
But palliative care is changing, and a key aspect is that other conditions are increasingly being included in palliative care in addition to oncologic conditions.
People with advanced neurological disease belong to a target group that particularly benefits from general palliative care. We even see the need for specialized palliative care for quite a few neurological diseases. Especially patients with neurodegenerative diseases, but also many other neurological diseases have a high and complex symptom burden in advanced stages.
Palliative care for people with neurological diseases is incredibly diverse and experience has shown that it requires a great deal of specialized neurological knowledge. Neurological symptoms lead to increased symptom burden and uncertainty for those affected and their families, and despite good outpatient care, hospitalizations are a recurring occurrence.
Patients with neurological symptoms or diseases who are cared for by a SAPV team or in a hospice are given access to specialist neurological as well as neuropalliative care and advice in this project. The goal is to improve the care of complex neurological problems in palliative patients.
The new form of care
SAPV teams and hospices from all over Bavaria are connected to the expert center, the neurology department of Agatharied Hospital, and equipped with mobile Telesystems (tablet, mobile WLAN router) specially designed for the circumstances. These allow secure point-to-point video consults in real time between the patient at home or in the hospice and the expert center (Agatharied). When a neurological problem occurs, the supervising physician of the SAPV team or the hospice contacts the study center and, if necessary, a video counsil can be held between the patient's bedside (at home or hospice) and the Agatharied neurology department (24/7).
Regular training of medical and nursing staff and continuing education events in the form of web-based seminars and SOPs will be developed. Lessons learned during the project will be incorporated on an ongoing basis. This should create the basis for improving the overall care of patients with neurological diseases and increase the quality of medical and nursing care in palliative care. Through the telemedicine center in Agatharied, in addition to the possibility of holding teleconsultations with patients, structural work is also provided. Standards for the treatment of neurological patients in a palliative phase are to be developed and made available. Regular training are to strengthen the SAPV teams and physicians in the hospice. Public relations work is to draw attention to the meaningfulness and necessity of palliative care for neurological patients.
Objective
The aim is to improve the outpatient and hospice care of neurological patients in a palliative phase by making specialist neurological expertise available via telemedicine.
The clinical trial will collect sufficient data to prove the effectiveness of this concept to transfer it to standard care.
Telemedicine allows expert knowledge to be made available to a wide audience. In neurology, we depend on the already existing extremely good care structures of SAPV care and hospices to care for our patients, because they can provide the important palliative part, which means multidisciplinary, holistic care. In this way, we can support these facilities in caring for neurological patients and remove any inhibitions they may have about caring for neurological patients.
An important component of Palliative Care
The care of neurological patients is still poorly established in palliative care. Specialized palliative care is often reluctant to admit patients with neurological diseases due to the partial lack of neurological knowledge. Neurologists often do not see the need for palliative care for their patients and are too unaware of the benefits of this form of care. It is also not well known in the general population that palliative care can also be used for non-tumor patients. In addition, there is often confusion between the terms "end of life care" and "palliative care". This is in contrast to increasing numbers of people with neurological diseases who would benefit from palliative care.
But palliative care is changing, and a key aspect is that other conditions besides oncology are increasingly being included in palliative care.
People with advanced neurological disease are among a target group that particularly benefit from general palliative care. We even see the need for specialized palliative care in some neurological diseases.
The final phase of neurological diseases is often characterized by immobility due to spasticity, paralysis or rigor, as well as by the inability of the affected patients to express themselves linguistically, whether due to aphasia or - which is much more common - anarthria, i.e. the inability to speak. This also complicates care because, apart from the difficulties of caring for immobile patients, it is often impossible to know the detailed will of the patient. We have often seen that relatives are best able to communicate with the patient at this stage, as they are most attuned to the needs.
Therefore, every hospital transfer is also a great burden because there one does not have the experience of the individual communication possibilities. In addition, the amount of care required is such that in many hospitals the staff would be overworked. In many hospitals, there is simply a lack of expertise in symptom management in the terminal phase of a neurological disease, so that the hospital stay is experienced as not achieving the goal for all involved. As a result, many patients with neurological conditions are cared for at home or in nursing homes without the availability of specialist help. This applies not only to patients with amyotrophic lateral sclerosis, but also to patients with Parkinson's disease, atypical Parkinson's syndromes such as PSP, corticobasal degeneration and multiple system atrophy, as well as patients with multiple sclerosis and especially patients with the various forms of dementia. However, patients with neurodegenerative diseases that begin in childhood or adolescence now often reach adulthood due to improved therapeutic options (e.g., Duchenne muscular atrophy). Patients with traumatic brain injury or congenital brain injury are also now often cared for in the home by family members. These patients also reach a state where palliative care is necessary and should preferably be offered at home.
