Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, United Kingdom.
PLoS One. 2024 Jul 11;19(7):e0306717. doi: 10.1371/journal.pone.0306717. eCollection 2024.
Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study, the second step in a wider study developing such a Core Outcome Set, aimed to explore the perceptions and experiences of patients with advanced cancer, informal caregivers, and clinicians regarding the potential outcomes to assess the impact of prognostication.
We conducted semi-structured interviews with patients living with advanced cancer (n = 8), informal caregivers (n = 10), and clinicians (n = 10) recruited from palliative care services across three sites in London, United Kingdom. Interviews were conducted in-person, via telephone, or video conferencing, and were audio-recorded. Data were analysed using framework analysis. Findings were compared with outcomes identified in a previously published systematic review.
We identified 33 outcomes, 16 of which were not previously reported in the literature. We grouped these outcomes into 10 domains, nine from the COMET taxonomy, plus a tenth domain (spiritual/religious/existential functioning/wellbeing) which we added further to the previous systematic review. These findings highlighted discrepancies between the priorities of existing research and those of stakeholders. Novel outcomes highlight the more personal and emotional impacts of prognostication, whilst other outcomes confirm the relevance of survival length, depression, anxiety, pain, hope dynamics, emotional distress, and the quality of patient-clinician relationships for assessing the impact of prognostication.
This study offers valuable insights into outcomes which matter to key stakeholders, particularly patients and informal caregivers, highlights discrepancies between their priorities and those identified in previous studies, and underscores the need for a patient-centred approach in research and clinical practice in prognostication in advanced cancer. This work will contribute to developing a Core Outcome Set for assessing the impact of prognostication in advanced cancer.
在晚期癌症的预后研究中，使用了广泛的结局和结局指标，这使得比较这些研究及其发现变得困难。核心结局集促进了研究之间的可比性和标准化，并将使未来的预后研究受益。这项定性研究是制定此类核心结局集的更广泛研究的第二步，旨在探讨晚期癌症患者、非专业照护者和临床医生对潜在结局的看法和经验，以评估预后对其的影响。
我们从英国伦敦的三个姑息治疗服务中心招募了晚期癌症患者（n=8）、非专业照护者（n=10）和临床医生（n=10），进行了半结构化访谈。访谈以面对面、电话或视频会议的方式进行，并进行了音频记录。使用框架分析对数据进行分析。研究结果与之前发表的系统评价中确定的结局进行了比较。
我们确定了 33 个结局，其中 16 个在文献中没有报道过。我们将这些结局分为 10 个领域，9 个来自 COMET 分类法，加上第 10 个领域（精神/宗教/存在/幸福感），这是我们在之前的系统评价中进一步增加的。这些发现突出了现有研究和利益相关者之间的优先事项之间的差异。新出现的结局突出了预后对个人和情感的影响，而其他结局则证实了生存时间、抑郁、焦虑、疼痛、希望动态、情绪困扰以及患者与临床医生关系的质量对评估预后影响的相关性。
这项研究提供了对关键利益相关者（特别是患者和非专业照护者）关注的结局的宝贵见解，突出了他们的优先事项与之前研究中确定的优先事项之间的差异，并强调了在晚期癌症预后研究和临床实践中需要采用以患者为中心的方法。这项工作将有助于制定用于评估晚期癌症预后影响的核心结局集。
