Palliative care for interstitial lung disease: A nationwide survey of pulmonary specialists
Palliative care for interstitial lung disease: A nationwide survey of pulmonary specialists
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DOI：
10.1111/resp.14493
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发表时间：
2023-03-22
期刊：
影响因子：
6.9
通讯作者：
Suda，Takafumi
中科院分区：
文献类型：
--
作者：
Fujisawa，Tomoyuki;Akiyama，Norimichi;Suda，Takafumi
背景与目的间质性肺病是进展性的疾病，症状负担大，预后差。ILD患者需要最佳的姑息治疗来维持他们的生活质量，然而，很少有全国性的调查涉及到ILD的姑息治疗。问卷被邮寄给经日本呼吸学会认证的肺科专家(n=3423)。结果1332名(38.9%)受试者完成了问卷调查，并对1023名在过去一年中护理ILD患者的数据进行了分析。大多数参与者报告说，ILD患者经常或总是主诉呼吸困难和咳嗽，但只有25%的人让他们去看PC团队。临终沟通的时间往往晚于医生认为的理想时间。与LC相比，参与者在ILD的PC中症状缓解和决策方面的难度要大得多。ILD患者使用阿片类药物治疗呼吸困难的频率低于LC患者。与LC相比，肺科专科医生在为ILD提供PC方面存在更多困难，包括“无法预测预后”、“缺乏对呼吸困难的既定治疗”、“缺乏心理和社会支持”以及“患者/家属难以接受疾病的不良预后”。结论肺科专家在为ILD提供PC方面比LC更困难，并报告了PC中存在大量ILD特异性障碍。需要多方面的临床研究来开发治疗ILD的最佳PC。
Background and ObjectiveInterstitial lung disease (ILD) is progressive with high symptom burdens and poor prognosis. Patients with ILD need optimal palliative care to maintain their quality of life, however, few nationwide surveys have addressed palliative care for ILD.MethodsA nationwide, self‐administered questionnaire was conducted. Questionnaires were sent by mail to pulmonary specialists certified by the Japanese Respiratory Society (n= 3423). The current practices of PC for ILD, end‐of‐life communication, referral to a PC team, barriers to PC for ILD, and comparison of PC between ILD and lung cancer (LC).Results1332 (38.9%) participants completed the questionnaire, and the data of 1023 participants who had cared for ILD patients in the last year were analysed. Most participants reported that ILD patients often or always complained of dyspnoea and cough, but only 25% had referred them to a PC team. The timing of end‐of‐life communication tended to be later than the physician‐perceived ideal timing. The participants experienced significantly greater difficulty in symptomatic relief and decision‐making in PC for ILD compared to LC. Prescription of opioids for dyspnoea was less frequent for ILD than for LC. ILD‐specific barriers in PC included an ‘inability to predict prognosis’, ‘lack of established treatments for dyspnoea’, ‘shortage of psychological and social support’, and ‘difficulty for patients/families to accept the disease's poor prognosis’.ConclusionPulmonary specialists experienced more difficulty in providing PC for ILD compared to LC and reported considerable ILD‐specific barriers in PC. Multifaceted clinical studies are needed to develop optimal PC for ILD.