Sharp Charles, Lamb Heather, Jordan Nikki, Edwards Adrienne, Gunary Rachel, Meek Patricia, Millar Ann B, Kendall Clare, Adamali Huzaifa
Bristol Interstitial Lung Disease service, North Bristol NHS Trust, Bristol, UK.
Palliative Medicine, North Bristol NHS Trust, Bristol, UK.
BMJ Support Palliat Care. 2018 Sep;8(3):340-346. doi: 10.1136/bmjspcare-2017-001330. Epub 2017 Jun 30.
Palliative care is underused in non-malignant respiratory diseases, including interstitial lung diseases (ILDs). We investigated current practices around palliative and supportive care and explored the impact of a supportive care decision aid tool.
This was a single centre study in a UK ILD centre. Retrospective analysis of hospice referrals and patients with idiopathic pulmonary fibrosis (IPF) under the Bristol ILD (BILD) service were used to identify unmet palliative and supportive care needs. Using quality improvement methodology, we explored the impact of a supportive care decision aid on clinician behaviours for patients with ILD.
108 patients with ILD were referred for hospice care between 2010 and 2015, representing 0.15% of all referrals, compared with a population prevalence of IPF of 0.9%. The median interval between referral and death was 124 days.Records were reviewed for 64 deceased and 89 living patients with IPF seen on July-December 2014. The decision aid was prospectively assessed with 73 patients. The deceased patients had greater markers of severity. There were no other differences between the groups.After introduction, the decision aid tool was completed for 49.3% of patients and resulted in significant increases in documented discussion of referral to palliative care (11.2%vs53.6%, p<0.01) and end-of-life discussions (15.7%vs91.8%, p<0.01). Tool completion led to an increase in referral for palliative care (2.7%vs16.7%, p<0.01).
Palliative care services are underused in ILD and a supportive care decision aid can prompt consideration of palliative and supportive care needs.
姑息治疗在包括间质性肺疾病（ILD）在内的非恶性呼吸系统疾病中未得到充分利用。我们调查了当前姑息和支持治疗的实践情况，并探讨了一种支持治疗决策辅助工具的影响。
这是一项在英国ILD中心进行的单中心研究。对临终关怀转诊病例以及布里斯托尔ILD（BILD）服务下的特发性肺纤维化（IPF）患者进行回顾性分析，以确定未满足的姑息和支持治疗需求。我们采用质量改进方法，探讨了支持治疗决策辅助工具对ILD患者临床医生行为的影响。
2010年至2015年间，108例ILD患者被转诊至临终关怀机构，占所有转诊病例的0.15%，而IPF的人群患病率为0.9%。转诊至死亡的中位间隔时间为124天。对2014年7月至12月期间就诊的64例已故和89例在世的IPF患者的记录进行了审查。对73例患者前瞻性评估了该决策辅助工具。已故患者有更严重的指标。两组之间没有其他差异。引入该工具后，49.3%的患者完成了决策辅助工具，导致记录在案的关于转诊至姑息治疗的讨论显著增加（11.2%对53.6%，p<0.01）以及临终讨论显著增加（15.7%对�1.8%，p<0.01）。完成工具使用导致转诊至姑息治疗的比例增加（2.7%对16.7%，p<0.01）。
ILD患者对姑息治疗服务的利用不足，一种支持治疗决策辅助工具可以促使人们考虑姑息和支持治疗需求。
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