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基于人群的癌症幸存者患者报告结局采集的初步研究。

A pilot study of population-based, patient-reported outcome collection in cancer survivors.

机构信息

Department of Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders University and Flinders Medical Centre Adelaide, Flinders Drive, Bedford Park, South Australia, 5042, Australia.

Cancer Council South Australia, Greenhill Rd, Eastwood, Australia.

出版信息

Support Care Cancer. 2021 Aug;29(8):4239-4247. doi: 10.1007/s00520-020-05910-2. Epub 2021 Jan 7.

DOI:10.1007/s00520-020-05910-2
PMID:33411044
Abstract

AIM

To determine feasibility and acceptability of completing PROs questionnaires at completion and 1 year after curative cancer treatment.

METHODS

Patients assessed in a nurse-led end of treatment survivorship clinic, at a tertiary referral centre, recruited between October 2015 and July 2016 were mailed a survey at baseline and at 12-month follow-up. The survey included validated PRO questionnaires. A target response rate for feasibility, defined as the proportion of the eligible population approached that completed the survey, was set at 70%. Qualitative feedback regarding the survey was collected from participants.

RESULTS

Of the 47 eligible patients approached, 34 (72.4%) agreed to participate with 29 (61.9%) completing the survey at baseline, and 21 (44.7%) at follow-up. Respondents lost to follow-up at 12 months had clinically meaningful lower scores on all QLQ-C30 functioning scales and 8 out of 9 symptom scales/items. Qualitative feedback from survey respondents indicated the content was relevant and acceptable. Participants expressed willingness to complete a similar survey approximately once per year and a higher preference for completing the survey in hard copy compared with online.

CONCLUSIONS

Cancer survivors are willing to provide information on a range of PROs, but those with higher needs were the ones less likely to complete surveys. There is scope to improve the response rate and representativeness of the patient cohort captured. Future research should identify strategies to optimise recruitment when collecting PROs data from cancer survivors.

摘要

目的

确定在癌症根治性治疗结束时和 1 年后完成患者报告结局(PROs)问卷的可行性和可接受性。

方法

2015 年 10 月至 2016 年 7 月,在一家三级转诊中心,对在护士主导的治疗后生存诊所接受评估的患者进行了招募,他们在基线和 12 个月随访时通过邮寄方式收到了一份包含经过验证的 PRO 问卷的调查。将可行性的目标应答率(定义为已接触的合格人群中完成调查的比例)设定为 70%。从参与者那里收集了有关调查的定性反馈。

结果

在接触的 47 名合格患者中,有 34 名(72.4%)同意参与,其中 29 名(61.9%)在基线时完成了调查,21 名(44.7%)在随访时完成了调查。在 12 个月时失访的应答者在所有 QLQ-C30 功能量表和 8 个症状量表/项目中的评分均具有临床意义上的较低水平。来自调查应答者的定性反馈表明,内容是相关且可接受的。参与者表示愿意每年大约完成一次类似的调查,并且更愿意以纸质形式而不是在线形式完成调查。

结论

癌症幸存者愿意提供一系列 PRO 信息,但需求较高的患者完成调查的可能性较小。提高应答率和代表性的空间仍然存在。未来的研究应该确定从癌症幸存者那里收集 PRO 数据时优化招募的策略。

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