- Startseite
- Forschung
- Neuro-Palliativ
- MS-Consultation Hotline
MS Hotline
Evaluation of a palliative and hospice telephone hotline for severely affected Multiple Sclerosis patients and their caregivers
Scientific management: Prof. Dr. Raymond Voltz, Assistant Professor Dr. Heidrun Golla
Contact: Dr. Dr. Julia Strupp, Gabriele Grede
Duration: 01.01.2019 - 31.12.2019
Funding institution: Gemeinnützige Hertie-Stiftung (mitMiSsion)
Project Description
Patients severely affected by multiple sclerosis (MS) - as well as their informal caregivers - have multiple supportive and palliative care needs. Already established care systems alone do not necessarily address all of the patients' needs, and there are first indications that palliative and hospice care (PHC) can be a valuable complementary asset for patients severely affected by MS. In order to bring patients severely affected by MS in contact with PHC, we established a counselling PHC hotline specific for MS. A hotline allows for consultation that does not require patients to leave their home. The preliminary evaluation of the hotline came to the conclusion that it was well accepted by patients and their formal and informal caregivers and seems to be a valuable service in order to gain information about and access to PHC.
Since September 2014 this hotline has been extended nationwide to:
- provide information about PHC
- assess the caller’s eligibility for PHC
- recommend appropriate local available PHC services according to the individual's needs
The aim of this study is to 1) evaluate the hotline including its relevance, its callers, their characteristics and queries, and 2) analyse challenges and possible barriers to integrating PHC services into the treatment of severely affected MS patients by conducting follow-up calls. The nationwide hotline was designed and introduced to the MS community in cooperation with the German Multiple Sclerosis Society (DMSG). Calls were documented using a documentation form supplemented by personal notes capturing socio-demographic and disease-related information as well as concerns regarding death and dying. Data was analysed descriptively.