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<p>Chronic breathlessness is a highly prevalent, distressing symptom among people with chronic respiratory disease (CRD), often persisting despite optimal treatment. Primary care clinicians are well-positioned to offer early access to self-management support, however, many report limited knowledge, resources and confidence in managing breathlessness. The PrimaryBreathe Australia clinical trial is an ongoing partnership with PrimaryBreathe UK. In partnership with people with CRD, primary healthcare workers (HCWs), and additional stakeholders, we aimed to co-design a technology-supported, evidence-based, breathlessness self-management intervention, to be delivered to Australians with CRD enrolled in the PrimaryBreathe Australia clinical trial. Using a cyclical co-design approach, we conducted two rounds of semi-structured interviews and a consensus-building focus group to design/develop a feasible and acceptable intervention ahead of trial implementation. Data were transcribed and analysed according to the Theoretical Domains Framework. A total of 39 participants contributed to the co-design process, including 17 patients, 20 HCWs, and 2 stakeholders. Key overarching themes included: patient engagement in care; primary HCWs’ approach to management; and healthcare structures, and the impacts of these domains on access to healthcare and breathlessness management. Tailored implementation strategies to address the concerns raised included: clinician-supported, self-management education for patients; flexible, multimodal, intervention delivery; and continuity of care within familiar settings. Our newly co-designed, evidence-based, breathlessness, self-management intervention was collaboratively developed with HCWs, people living with CRD, and additional stakeholders. This participatory approach ensures the intervention is patient-focused, contextually relevant, and fit for purpose when deployed in the PrimaryBreathe Australia clinical trial from 2025.</p>

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Co-designing a primary care delivered, breathlessness, self-management intervention for people with chronic respiratory disease

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年4月23日

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  • Natasha Smallwood,
  • Amy Pascoe,
  • Lena Ly,
  • Anna Spathis,
  • Sarah Hoare,
  • Lindsey Berends,
  • Jonathan Mant,
  • Jennifer Philip,
  • Rebecca Disler,
  • Anne E. Holland,
  • Yet Khor,
  • Christian Osadnik,
  • Lena Sanci

摘要

Chronic breathlessness is a highly prevalent, distressing symptom among people with chronic respiratory disease (CRD), often persisting despite optimal treatment. Primary care clinicians are well-positioned to offer early access to self-management support, however, many report limited knowledge, resources and confidence in managing breathlessness. The PrimaryBreathe Australia clinical trial is an ongoing partnership with PrimaryBreathe UK. In partnership with people with CRD, primary healthcare workers (HCWs), and additional stakeholders, we aimed to co-design a technology-supported, evidence-based, breathlessness self-management intervention, to be delivered to Australians with CRD enrolled in the PrimaryBreathe Australia clinical trial. Using a cyclical co-design approach, we conducted two rounds of semi-structured interviews and a consensus-building focus group to design/develop a feasible and acceptable intervention ahead of trial implementation. Data were transcribed and analysed according to the Theoretical Domains Framework. A total of 39 participants contributed to the co-design process, including 17 patients, 20 HCWs, and 2 stakeholders. Key overarching themes included: patient engagement in care; primary HCWs’ approach to management; and healthcare structures, and the impacts of these domains on access to healthcare and breathlessness management. Tailored implementation strategies to address the concerns raised included: clinician-supported, self-management education for patients; flexible, multimodal, intervention delivery; and continuity of care within familiar settings. Our newly co-designed, evidence-based, breathlessness, self-management intervention was collaboratively developed with HCWs, people living with CRD, and additional stakeholders. This participatory approach ensures the intervention is patient-focused, contextually relevant, and fit for purpose when deployed in the PrimaryBreathe Australia clinical trial from 2025.