多発性硬化症における緩和ケア

抄録

Multiple sclerosis (MS) presents with a variety of neurological symptoms in varying degrees and combinations, resulting in a wide range of physical pain, psychological pain, social pain, and spiritual pain. Patients with MS experience a great decrease in Quality of Life (QOL) due not only to the loss of ADLs caused by motor impairments but also invisible distress such as numbness, pain, and fatigue and emotional distress from not having their symptoms understood. The unpredictability of the disease course of MS also causes patients to have anxiety and fear of relapse or progression, even when symptoms are stable. Social pain caused by MS includes a high unemployment rate, economic burden of treatment, and impacts on life plans such as marriage and child–bearing. Since MS is more prevalent in the younger generation, patients are likely to have unstable economic backgrounds, which may lead to social and psychological pain. The long lasting physical, psychological, and social pain impact the well–being and mindfulness of patients and can easily lead to strong spiritual pain.

This guideline focuses on the physical, psychological, social, and spiritual pain that MS patients experience and investigate the need for palliative care not only for patients in the advanced stage with severe physical symptoms but also for patients in the early stages of the disease. Specifically, we conducted a systematic review (SR) of the clinical question (CQ) “Is continuous outpatient nursing care for MS patients effective from the perspective of their daily lives?”. A total of 1306 articles related to the CQ were obtained by a literature search on PubMed. Screening of the titles and abstracts was conducted by two neurologists, and 72 articles were extracted from 1306 articles. These articles covering a wide range of issues including counseling, rehabilitation, dysuria care, spasticity care, and caregiver/family burden reduction/psychological support indicated that palliative care for MS requires multidisciplinary intervention. To establish recommendations regarding the CQ, full text screening of the 72 articles is currently underway. On the other hand, only a few large–scale prospective studies in which the usefulness of continuous outpatient nursing care was examined were found, indicating the difficulty of building evidence in palliative care. We hope this guideline will draw attention to palliative care for patients with MS and that there will be a further accumulation of useful information in the future.