Bajwah Sabrina, Yorke Janelle
aCicely Saunders Institute, King's College London and King's College NHS Foundation Trust bSchool of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.
Curr Opin Support Palliat Care. 2017 Sep;11(3):141-146. doi: 10.1097/SPC.0000000000000285.
The palliative care needs of people with interstitial lung disease (ILD) have recently been highlighted by the National Institute for Health and Care Excellence. All people with progressive ILD should receive best supportive care to improve symptom control and quality of life and where possible this should be evidence based.
Deaths from ILD are increasing and deaths in hospital are more common compared to home. People with ILD experience a wide range of symptoms including breathlessness and cough. People living with ILD often suffer unmet physical and psychological needs throughout the disease journey. Few appropriately validated outcome measures exist for ILD which has hampered research on the longitudinal experience of symptoms and quality of life and the evaluation of interventions. Recent recommendations from the National Institute of Clinical Excellence promote the use of a new palliative care needs assessment tool. Use of a tool in busy respiratory clinics may help to highlight those requiring specialist input.
Further research into the role of opioids, oxygen and neuromodulatory agents in symptom management are needed. In addition, exploration of breathlessness and case conference interventions in transitioning patients from the hospital to community settings is a priority. Further work is needed to identify a core set of validated ILD-specific patient-reported outcome measures for the robust evaluation of interventions.
英国国家卫生与临床优化研究所最近强调了间质性肺疾病(ILD)患者的姑息治疗需求。所有进展性ILD患者都应接受最佳支持性治疗,以改善症状控制和生活质量,并且在可能的情况下,这应该基于证据。
ILD导致的死亡人数正在增加,与在家中死亡相比,在医院死亡更为常见。ILD患者会经历多种症状,包括呼吸急促和咳嗽。患有ILD的人在整个疾病过程中常常存在未得到满足的身体和心理需求。几乎没有经过适当验证的ILD结局指标,这阻碍了对症状和生活质量的纵向体验以及干预措施评估的研究。英国国家临床优化研究所最近的建议提倡使用一种新的姑息治疗需求评估工具。在繁忙的呼吸科诊所使用该工具可能有助于找出那些需要专科治疗的患者。
需要进一步研究阿片类药物、氧气和神经调节药物在症状管理中的作用。此外,优先探索在将患者从医院过渡到社区环境中的呼吸急促和病例讨论干预措施。需要进一步开展工作,以确定一套经过验证的、针对ILD的核心患者报告结局指标,用于对干预措施进行有力评估。