Ryan R, Tracey G, Lawlor P, O'Siorain L, Higgins S
Our Lady's Hospice & Care Services, Harolds Cross, Dublin 6W.
Ir Med J. 2012 Nov-Dec;105(10):335-8.
The provision of specialist palliative care to Irish patients suffering from motor neurone disease has not been described in the literature. The purpose of this study was to characterize the care provided at a Dublin hospice. Consecutive referrals between 1st January 1999 and 31st December 2008 (n=72) were reviewed. At the time of data collection, 61 (84.7%) were deceased, 9 (12.5%) were alive and the status of 2 (2.7%) was unknown. At first assessment, 48 (66%) had bulbar symptoms and 35 (49%) had respiratory symptoms, 50 (70%) were receiving Riluzole, 25 (35%) had a feeding tube and 13 (18%) were using non-invasive positive pressure ventilation (NIPPV). Median survival from the point of referral was 7 months (95% CI 4.5-9.4). Of the 61 deceased patients, 22 (36%) died at home, 22 (36%) died in the inpatient unit, 9 (15%) died in hospital and 8 (13%) died in a nursing home.
爱尔兰运动神经元病患者的专科姑息治疗在文献中尚无描述。本研究旨在描述都柏林一家临终关怀机构提供的护理情况。回顾了1999年1月1日至2008年12月31日期间的连续转诊病例（n = 72）。在数据收集时，61例（84.7%）已死亡，9例（12.5%）存活，2例（2.7%）情况不明。初次评估时，48例（66%）有延髓症状，35例（49%）有呼吸症状，50例（70%）正在接受利鲁唑治疗，25例（35%）有鼻饲管，13例（18%）使用无创正压通气（NIPPV）。从转诊时起的中位生存期为7个月（95%CI 4.5 - 9.4）。在61例死亡患者中，22例（36%）在家中死亡，22例（36%）在住院部死亡，9例（15%）在医院死亡，8例（13%）在养老院死亡。
