South Australian Health and Medical Research Institute, North Terrace, Adelaide, SA, Australia.
University of South Australia, Adelaide, SA, Australia.
Qual Life Res. 2021 Feb;30(2):407-423. doi: 10.1007/s11136-020-02651-x. Epub 2020 Sep 29.
Collecting patient-reported outcomes is important in informing the well-being of women with breast cancer. Consumer perceptions are important for successful implementation of monitoring systems, but are rarely formally assessed. We compared reactions to two different surveys (assessing psychosocial outcomes and/or Health-related Quality of Life (HrQoL) outcomes) among Australian women with breast cancer.
Women (18 + years) within 5 years diagnosis of breast cancer were randomly allocated to complete one of two online surveys: (i) minimum HrQoL measures or (ii) minimum HrQoL measures plus psychosocial outcomes (body image, depression, anxiety stress, fear of cancer recurrence, decisional difficulties and unmet need). Participants completed questions regarding their perceptions of the survey, including qualitative feedback.
Data were available for 171 participants (n = 89; n = 82), with 92% (n = 158) providing 95-100% complete data. Perceptions were comparable between survey groups, and high (80-100%) regarding time burden, ease of completion, comprehensible, appropriateness and willingness to participate again and moderately high (67-74%) regarding willingness to answer more questions and relevance. Qualitative feedback indicated gaps across both surveys, including financial/work-related issues, satisfaction with information and care, need for nuanced questions, and impact of side effects/treatment, and from the minimum set only, emotional well-being and support. Impairment in some HrQoL and psychosocial outcomes were observed among participants.
Assessment of HrQoL and psychosocial outcomes was well received by consumers. Results alleviate concern regarding possible patient burden imposed by longer more in-depth surveys. The importance placed on assessment brevity should not outweigh the need to assess outcomes that consumers consider important.
收集患者报告的结果对于了解乳腺癌女性的健康状况非常重要。消费者的看法对于成功实施监测系统很重要，但很少进行正式评估。我们比较了澳大利亚乳腺癌女性对两种不同调查的反应（评估心理社会结果和/或健康相关生活质量（HRQoL）结果）。
在诊断为乳腺癌 5 年内的女性（18 岁以上）被随机分配完成以下两项在线调查之一：（i）最低 HRQoL 措施或（ii）最低 HRQoL 措施加心理社会结果（身体形象、抑郁、焦虑压力、对癌症复发的恐惧、决策困难和未满足的需求）。参与者完成了关于他们对调查的看法的问题，包括定性反馈。
共有 171 名参与者（n=89；n=82）的数据可用，92%（n=158）提供了 95-100%完整的数据。调查组之间的看法相似，在时间负担、完成的难易程度、可理解性、适当性和再次参与的意愿方面得分较高（80-100%），在回答更多问题和相关性方面得分较高（67-74%）。定性反馈表明，两个调查都存在差距，包括财务/工作相关问题、对信息和护理的满意度、对细致问题的需求以及副作用/治疗的影响，以及仅从最低组中，情绪健康和支持。参与者存在一些 HRQoL 和心理社会结果受损的情况。
HRQoL 和心理社会结果的评估受到消费者的欢迎。结果缓解了对更长更深入调查可能给患者带来负担的担忧。评估简洁性的重要性不应超过评估消费者认为重要的结果的必要性。
