Elliott-Button Helene L, Johnson Miriam J, Hutchinson Ann, Currow David C, Clark Joseph
Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney, Ultimo, NSW, Australia.
NPJ Prim Care Respir Med. 2025 Jan 24;35(1):5. doi: 10.1038/s41533-024-00409-3.
Chronic breathlessness is a debilitating symptom with detrimental impact on individuals and carers. However, little is known about the experiences of community-dwelling, frail, older adults living with chronic breathlessness. To explore, (i) the psychological impact of living with chronic breathlessness, (older frail adult patients, carers) and (ii) how patients, carers, and clinicians experience identification and assessment of chronic breathlessness in the primary care setting. In-depth semi-structured interviews with eligible older adults (≥65 years; moderate to severe frailty [electronic Frailty Index >0.36]), and carers recruited from a community-based Integrated Care Centre in England. Clinicians were recruited from the Centre and affiliated GP practices. Recorded in-person interviews were transcribed and subjected to reflexive thematic analysis using Total Dyspnoea and Breathing Space conceptual frameworks. 20 patients (9 females), carers (4 spouses, 1 daughter), and clinicians (5 GPs, 3 advanced clinical practitioners, 2 nurses) were interviewed. Four themes were identified: (1) Widespread negative impact of chronic breathlessness. Breathlessness adversely impacts physical and psychological wellbeing. (2) Barriers to optimal health-seeking and identification of chronic breathlessness. Breathlessness is 'one of many' symptoms, and not prioritised in 'one appointment, one problem' consultations. Clinicians do not routinely ask about breathlessness. Patients are unaware of breathlessness-specific therapies. (3) Variations in chronic breathlessness management. Management is limited; few are offered evidence-based treatments (e.g., handheld fan) and patients find their own strategies. (4) Need for education and information. Clinicians felt helpless about breathlessness management, and patients lacked understanding and had low expectations of receiving help for this symptom. Breathlessness adversely impacts the psychological wellbeing of older frail adults. Chronic breathlessness in older, frail adults is invisible, unidentified and unmanaged in primary care. Evidence-based breathlessness interventions are available, but not routinely implemented with few patients accessing them. Proactive identification, assessment and management of breathlessness in primary care is needed to support adults living with chronic breathlessness.
慢性呼吸急促是一种使人衰弱的症状，对患者及其照顾者都有不利影响。然而，对于社区中患有慢性呼吸急促的体弱老年人的经历，我们知之甚少。本研究旨在探讨：（i）慢性呼吸急促对生活的心理影响（老年体弱患者、照顾者）；（ii）患者、照顾者和临床医生在初级保健环境中对慢性呼吸急促的识别和评估体验。我们对符合条件的老年人（≥65岁；中度至重度体弱[电子衰弱指数>0.36]）以及从英国一家社区综合护理中心招募的照顾者进行了深入的半结构化访谈。临床医生则从该中心及附属的全科医生诊所招募。对记录的面对面访谈进行转录，并使用“完全呼吸困难”和“呼吸空间”概念框架进行反思性主题分析。共访谈了20名患者（9名女性）、照顾者（4名配偶、1名女儿）以及临床医生（5名全科医生、3名高级临床从业者、2名护士）。研究确定了四个主题：（1）慢性呼吸急促的广泛负面影响。呼吸急促对身心健康产生不利影响。（2）寻求最佳健康及识别慢性呼吸急促的障碍。呼吸急促是“众多症状之一”，在“一次就诊，一个问题”的会诊中未被优先考虑。临床医生通常不会询问呼吸急促情况。患者不了解针对呼吸急促的特定治疗方法。（3）慢性呼吸急促管理的差异。管理有限；很少有人接受循证治疗（如手持风扇），患者自行寻找应对策略。（4）对教育和信息的需求。临床医生对呼吸急促管理感到无助，患者缺乏了解且对该症状获得帮助的期望较低。呼吸急促对老年体弱成年人的心理健康产生不利影响。在初级保健中，老年体弱成年人的慢性呼吸急促未被察觉、未被识别且未得到管理。有循证的呼吸急促干预措施，但未常规实施，很少有患者能够获得。初级保健中需要对呼吸急促进行积极的识别、评估和管理，以支持患有慢性呼吸急促的成年人。
