Qualitative analysis of patients' feedback from a PROMs survey of cancer patients in England

Qualitative analysis of patients' feedback from a PROMs survey of cancer patients in England
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DOI:
10.1136/bmjopen-2012-002316
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发表时间:
2013-01-01
期刊:
影响因子:
2.9
通讯作者:
Richards, Sir Mike
Richards, Sir Mike
中科院分区:
医学3区
文献类型:
--
作者:
Corner, Jessica;Wagland, Richard;Richards, Sir Mike

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目的 本研究探讨了癌症幸存者的自由文本评论如何补充正式的患者报告结果测量 (PROM),作为英格兰 PROM 癌症调查计划的一部分。设计 对基于人群的横断面邮寄问卷末尾的单个开放式自由文本问题的答复进行定性内容分析。设置 通过三个英国癌症登记处确定个体,并将调查问卷张贴到他们的家庭住址。参与者随机抽取个体样本 (n=4992)在 1、2、3 和 5 年前诊断出患有乳腺癌、结直肠癌、非霍奇金淋巴瘤或前列腺癌。结果 3300 名参与者完成了调查(响应率为 68%)。其中 1056 人 (32%) 填写了自由文本评论框,表明高度致力于提供有关患者体验的书面反馈。几乎五分之一 (19%) 的人在治疗阶段经历过优质护理,只有 8% 的人报告了负面经历。这与原发性癌症治疗后的护理经历形成鲜明对比,在原发性癌症治疗后,大多数护理结果呈阴性。对患者报告的结果产生负面影响的因素包括癌症的情绪影响;治疗和护理经验不佳;合并症、治疗副作用、社交困难以及对各种有时是长期持续的身体和心理问题的准备不足。协助康复的中介因素包括专业主导的因素(例如针对预期问题和善后服务的准备质量)和参与者主导的因素(例如向其他癌症幸存者学习以及通过反复试验进行自我学习)。朋友和家人的支持也是参与者结果的一个因素。 结论 这种对自由文本评论的分析补充了 PROM 测量的定量分析,阐明了影响生活质量 (QoL) 的因素之间的关系,并表明了为什么癌症患者的生活质量可能比一般人群明显较差。数据表明,为个人进行更系统的准备和善后护理以自我管理治疗后问题可能会改善癌症幸存者的生活质量。
Objective This study examined how free-text comments from cancer survivors could complement formal patient-reported outcome measures (PROMs), as part of the England PROMs survey programme for cancer.Design A qualitative content analysis was conducted of responses to a single open-ended free-text question placed at the end of the cross-sectional population-based postal questionnaire.Setting Individuals were identified through three UK Cancer Registries and questionnaires were posted to their home addresses.Participants A random sample of individuals (n=4992) diagnosed with breast, colorectal, non-Hodgkins lymphoma or prostate cancer at 1, 2, 3 and 5years earlier.Results 3300 participants completed the survey (68% response rate). Of these 1056 (32%) completed the free-text comments box, indicating a high level of commitment to provide written feedback on patient experience. Almost a fifth (19%) related experiences of excellent care during the treatment phase, with only 8% reporting negative experiences. This contrasted with experiences of care after primary cancer treatment where the majority were negative. Factors impacting negatively upon patient-reported outcomes included the emotional impact of cancer; poor experiences of treatment and care; comorbidities, treatment side effects, social difficulties and inadequate preparation for a wide range of sometimes long-lasting on-going physical and psychological problems. Mediating factors assisting recovery incorporated both professional-led factors, such as quality of preparation for anticipated problems and aftercare services, and participant-led factors, such as learning from other cancer survivors and self-learning through trial and error. The support of friends and family was also a factor in participants' outcomes.Conclusions This analysis of free-text comments complements quantitative analysis of PROMs measure's by illuminating relationships between factors that impact on quality of life (QoL) and indicate why cancer patients may experience significantly worse QoL than the general population. The data suggest more systematic preparation and aftercare for individuals to self-manage post-treatment problems might improve QoL outcomes among cancer survivors.