Evaluation of a palliative and hospice care telephone hotline for patients severely affected by multiple sclerosis and their caregivers

摘要

Background and purpose Palliative and hospice care ( PHC ) still mainly focuses on patients with cancer. In order to connect patients severely affected by multiple sclerosis ( MS ) and caregivers to PHC , a nationwide hotline was implemented to facilitate access to PHC. Methods The hotline was designed in cooperation with the German Multiple Sclerosis Society. Self‐disclosed information given by callers was documented using case‐report forms supplemented by personal notes. Data were analysed descriptively. Results A total of 222 calls were documented in 27 months. The patients' mean age was 51.12 years (range 27–84 years) and mean illness duration was 18 years (range 1 month to 50 years). Inquiries included information on PHC (28.8%) and access to PHC (due to previous refusal of PHC , 5.4%), general care for MS (36.1%), adequate housing (9.0%) and emotional support in crisis (4.5%). A total of 31.1% of callers reported ‘typical’ palliative symptoms (e.g. pain, 88.4%), 50.5% reported symptoms evolving from MS and 35.6% reported psychosocial problems. For 67 callers (30.2%), PHC services were recommended as indicated. Conclusions The hotline provided insight into the needs and problems of patients severely affected by MS and their caregivers, some of which may be met by PHC . Future follow‐up calls will demonstrate if the hotline helped to improve access to PHC beyond providing information. Overall, the hotline seemed to be easily accessible for patients severely affected by MS whose mobility is limited.