Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK.
University of Cambridge School of Clinical Medicine, Cambridge, UK.
NPJ Prim Care Respir Med. 2019 Apr 12;29(1):11. doi: 10.1038/s41533-019-0124-z.
Chronic obstructive pulmonary disease (COPD) has a negative impact on people's quality of life affecting daily activities and mental and emotional well-being. Healthcare services need to understand what patients want and need. We used a co-production methodology, Working Together for Change, not previously used in a COPD setting to determine what matters to people with COPD. Forty patients took part in one-to-one discussions to identify what was working well, not working well and what was important for the future in terms of their COPD care. The responses were analysed in two one-day co-production workshops involving COPD patients, carers and professionals. The six highest priority themes around what's not working well were: 'I don't think the right hand knows what the left hand is doing', 'I can't get appointments when I want them', 'I'm not treated as a person', 'I can't do what I want to do', 'I'm anxious and depressed' and 'I can't eat well.' Professionals gained powerful insights into the difficulties of COPD through their interactions with patients in the workshops. What mattered to patients encompassed meaning, purpose and relationships beyond immediate medical needs and underlines the need for patient-centred holistic approaches to COPD care and support.
慢性阻塞性肺疾病(COPD)对人们的生活质量产生负面影响,影响日常活动以及心理和情绪健康。医疗保健服务需要了解患者的需求。我们使用了一种共同生产方法,即“共同努力以实现变革”,这是一种以前未在 COPD 环境中使用过的方法,旨在确定 COPD 患者关心的问题。40 名患者参加了一对一的讨论,以确定在 COPD 护理方面,哪些方面运作良好,哪些方面运作不佳,以及未来哪些方面重要。在涉及 COPD 患者、护理人员和专业人员的两个为期一天的共同生产研讨会上对这些回应进行了分析。运作不佳的六个最优先主题是:“我认为左手不知道右手在做什么”、“我无法在想要的时间预约”、“我没有被当作一个人对待”、“我无法做我想做的事”、“我焦虑和抑郁”以及“我无法正常进食”。专业人员通过在研讨会上与患者互动,深入了解 COPD 的困难。患者关心的问题包括超越直接医疗需求的意义、目的和人际关系,这强调了需要采取以患者为中心的整体方法来治疗和支持 COPD。