Cancer patients' and clinicians' opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research

Cancer patients' and clinicians' opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research
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DOI:
10.1007/s00520-012-1518-4
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发表时间:
2012-12-01
影响因子:
3.1
通讯作者:
Wright, Penny
Wright, Penny
中科院分区:
医学2区
文献类型:
--
作者:
Ashley, Laura;Jones, Helen;Wright, Penny

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英国国家癌症生存计划的首要任务是增加诊断后纵向患者报告结果测量 (PROM) 的收集。本研究旨在收集癌症患者和临床医生对于在二级护理途径中接触患者加入基于纵向观察性 PROM (LO-PROM) 研究的最佳时间的意见和偏好。样本包括 15 名非转移性乳腺癌、结直肠癌或前列腺癌患者,以及 15 名临床医生,包括外科医生、肿瘤科医生和护理专家。患者和临床医生参加了一次面对面的主题引导录音访谈。使用主题内容分析对数据进行分析。患者不希望在护理途径的早期、接近诊断和治疗计划或在任何手术及其结果之前就 LO-PROM 研究进行接触。患者认为,LO-PROMs 研究最好从人们“确定”(手术后)治疗方案时开始引入,只要他们情绪上应对良好并且没有经历明显的身体副作用;患者强调人们对癌症和治疗的体验和反应存在差异。临床医生也建议不要在诊断前进行研究,尽管通常建议比患者更早地开始招募。患者表达了强烈的同质偏好,并且理想地希望在他们最初对癌症治疗和生存的恐惧和焦虑减轻时就 LO-PROM 研究进行接触,并且他们对未来感到一定的确定性和乐观感。由于临床事件的时间线各不相同,最大限度地招募可能意味着在诊断后的不同时间点接触患者。讨论了进一步的招聘影响。
A priority of the UK National Cancer Survivorship Initiative is to increase collection of patient-reported outcome measures (PROMs) longitudinally post-diagnosis. This study aimed to gather cancer patients' and clinicians' opinions and preferences about the best time, in the secondary care pathway, to approach patients about joining longitudinal observational PROMs-based (LO-PROMs) research.The sample comprised 15 patients with non-metastatic breast, colorectal or prostate cancer, and 15 clinicians including surgeons, oncologists and nurse specialists. Patients and clinicians participated in one face-to-face topic-guided audio-recorded interview. Data were analysed using thematic content analysis.Patients did not want to be approached about LO-PROMs research early in the care pathway, near diagnosis and treatment planning or before any surgery and its results. Patients felt that LO-PROMs research is best introduced from the time people are 'settled' on (post-surgical) treatment regimens, provided they are coping well emotionally and not experiencing significant physical side effects; patients emphasised variability in people's experience of and response to cancer and treatment. Clinicians also advised against approach near diagnosis, although generally recommended initiating recruitment somewhat sooner than patients.Patients expressed strong homogeneous preferences and ideally wanted to be approached about LO-PROMs research when their initial fears and anxiety about cancer treatment and survival had diminished, and they felt some sense of certainty and optimism about the future. As the timeline of clinical events varies, maximising recruitment may mean approaching patients at varied time points post-diagnosis. Further recruitment implications are discussed.