Hull York Medical School, University of Hull, Hull, UK
School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, UK.
Eur Respir J. 2017 May 25;49(5). doi: 10.1183/13993003.02277-2016. Print 2017 May.
Breathlessness that persists despite treatment for the underlying conditions is debilitating. Identifying this discrete entity as a clinical syndrome should raise awareness amongst patients, clinicians, service providers, researchers and research funders.Using the Delphi method, questions and statements were generated expert group consultations and one-to-one interviews (n=17). These were subsequently circulated in three survey rounds (n=34, n=25, n=31) to an extended international group from various settings (clinical and laboratory; hospital, hospice and community) and working within the basic sciences and clinical specialties. The target agreement for each question was 70%. Findings were discussed at a multinational workshop.The agreed term, chronic breathlessness syndrome, was defined as breathlessness that persists despite optimal treatment of the underlying pathophysiology and that results in disability. A stated duration was not needed for "chronic". Key terms for French and German translation were also discussed and the need for further consensus recognised, especially with regard to cultural and linguistic interpretation.We propose criteria for chronic breathlessness syndrome. Recognition is an important first step to address the therapeutic nihilism that has pervaded this neglected symptom and could empower patients and caregivers, improve clinical care, focus research, and encourage wider uptake of available and emerging evidence-based interventions.
尽管针对基础病症进行了治疗,但呼吸困难仍然持续存在,这种情况会使人虚弱。将这种明确的病症实体确定为一种临床综合征,应当会提高患者、临床医生、服务提供者、研究人员和研究资助者的认识。
采用德尔菲法,通过专家组咨询和一对一访谈(n=17)生成了问题和陈述。随后,这些问题和陈述在三轮调查(n=34、n=25、n=31)中分发给来自不同环境(临床和实验室;医院、临终关怀和社区)和从事基础科学及临床专业的广泛国际群体。每个问题的目标协议是 70%。在一次跨国研讨会上讨论了调查结果。
商定的术语“慢性呼吸困难综合征”定义为尽管对潜在病理生理学进行了最佳治疗,但仍持续存在的呼吸困难,并导致残疾。“慢性”不需要规定持续时间。还讨论了法语和德语翻译的关键词,并认识到需要进一步达成共识,特别是在文化和语言解释方面。
我们提出了慢性呼吸困难综合征的标准。认识到这一被忽视的症状中普遍存在的治疗虚无主义,是解决问题的重要第一步,这可能会增强患者和护理人员的能力,改善临床护理,聚焦研究,并鼓励更广泛地采用现有的和新兴的循证干预措施。