Patients and Treatments in a Neuropalliative Outpatient Clinic. An Analysis of Clinical Routine Data from Five Years of Care

Teresa Grimm^1,2*Fabian Otto-Sobotka²Dorothee Steinker¹Oliver Summ^1,3Antje Timmer²Martin Groß^2,4

• ¹Department of Neurological Intensive Care and Rehabilitation, Evangelical Hospital Oldenburg, Oldenburg, Lower Saxony, Germany
• ²Faculty of Medicine and Health Sciences, University of Oldenburg, Oldenburg, Lower Saxony, Germany
• ³Department of Human Medicine, Faculty of Medicine and Health Sciences, University of Oldenburg, Oldenburg, Lower Saxony, Germany
• ⁴Department of Neurology, MEDIAN Klinik Bad Tennstedt, Bad Tennstedt, Germany

Introduction: Due to demographic changes, the prevalence of life-threatening neurological diseases and, consequently, the need for neuropalliative care is increasing. This study aims to describe the patient clientele of a neurological palliative outpatient clinic and the spectrum of necessary treatments and interventions. We also examined factors associated with respiratory treatment. Methods: In this longitudinal analysis, clinical routine data from a single centre were collected retrospectively from 232 adult patients. The patient characteristics regarding disease and treatment were evaluated descriptively. The factors influencing the need for ventilation were modelled in a logistic regression. The necessary treatment effort was modelled with a zero-inflated Beta regression. Results were reported as odds ratios with 95% confidence intervals (CIs). Results: 91 patients were women, 141 were men, and the mean age was 55.42 years. Neuropalliative patients represented diagnoses such as amyotrophic lateral sclerosis (ALS) (n = 81), ischemic stroke (n = 15), intracerebral haemorrhage (n = 15), Duchenne muscular dystrophy (n = 12), or craniocerebral trauma (n = 10). Palliative care counselling was the most common intervention for patients (n = 203), their close relatives (n = 177), and their nursing services (n = 75). Respiratory therapy (n = 188), speech and language therapy (n = 145), and physiotherapy (n = 143) were also frequently applied interventions. Sixty patients received botulinum toxin A treatment for hypersalivation, and 32 for spasticity. The odds of needing invasive ventilation increased by 3.7 (CI 1.7 – 7.8), and the need for mechanical insufflation-exsufflation increased by 2.2 (CI 1.1 – 4.3) in patients previously discharged from early neurological-neurosurgical rehabilitation. Prior intensive care treatment increased the odds of invasive ventilation by 5.1 (CI 2.2 – 11.5) and the use of mechanical insufflation-exsufflation by 2.3 (CI 1.1 – 4.8). Conclusions: Neuropalliative outpatient clinics demand a wide range of diagnostic measures and interventions as well as a multidisciplinary approach. Further research is necessary to investigate the relation between diagnosis and treatment needs.