Response data and questionnaires for PRAGMATIC - Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer

PRAGMATIC Main Paper: “Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): Quality of Life and Service Use Results”These data are csv files of responses from 110 patients together with tables and figures illustrating results. Patients entered demographic details at baseline and completed five quality of life questionnaires and a service use questionnaire over 5 time points – baseline, 3, 6, 9 and 12 months.The quality of life questionnaires were FACT-B, PRRS, GSE, GHQ-12 and EQ-5D-5L.Patients were offered the option of completing a paper questionnaire booklet or completing online at each time point. You can also view pdfs of the baseline questionnaire booklet and the three-month service use questionnaire.Purpose: To describe trends and explore factors associated with quality of life (QoL) and psychological morbidity and assess Breast Cancer (BC) health service use over a 12-month period for patients joining the supported self-management (SSM) pathway.Methods: Participants completed questionnaires at baseline, 3, 6, 9 and 12 months that measured QoL (FACT-B, EQ 5D-5L), self-efficacy (GSE), psychological morbidity (GHQ-12), roles and responsibilities (PRRS) and service use (cost diary).Results: 99/110 patients completed all timepoints, 32% (35/110) had received chemotherapy. The chemotherapy group had poorer QoL; FACT-B total score mean differences were 8.53 (95% CI: 3.42 to 13.64), 5.38 (95% CI: 0.17 to 10.58) and 8.00 (95% CI: 2.76 to 13.24) at 6, 9 and 12 months, respectively. The odds of psychological morbidity (GHQ12 >4) were 5.5-fold greater for those treated with chemotherapy. Financial and caring burdens (PRRS) were worse for this group (mean difference in change at 9 months 3.25 (95% CI: 0.42 to 6.07). GSE and GHQ-12 scores impacted FACT-B total scores, indicating QoL decline for those with high baseline psychological morbidity. Participants who had chemotherapy or high psychological morbidity or were unable to carry out normal activities and had highest service costs. Over the 12months 68.2% participants phoned/emailed breast care nurses, 53.3% visited a hospital breast clinician.Conclusion: The SSM pathway was suitable for most patients, but those who had received chemotherapy and/or had heightened psychological morbidity may benefit from closer monitoring and/or supportive interventions. Reduced access due to Covid-19 could have affected service use

PRAGMATIC主论文：《乳腺癌支持性自我管理路径患者体验（PRAGMATIC）：生活质量与服务使用结果》
本数据集包含110名患者的问卷应答CSV文件，以及用于展示研究结果的图表与表格。研究对象于基线阶段填写人口统计学信息，并在基线、3个月、6个月、9个月及12个月共5个时间节点，完成5份生活质量问卷与1份服务使用问卷。所用生活质量问卷包括FACT-B、PRRS、GSE、GHQ-12及EQ-5D-5L。
患者可在每个时间节点选择填写纸质问卷手册，或完成线上问卷。使用者还可查看基线问卷手册与3个月服务使用问卷的PDF版本。

研究目的：本研究旨在描述加入支持性自我管理（Supported Self-Management, SSM）路径的乳腺癌患者，在12个月随访期内的生活质量（Quality of Life, QoL）与心理疾病负担变化趋势，探索与其相关的影响因素，并评估乳腺癌（Breast Cancer, BC）医疗服务使用情况。

研究方法：研究对象在基线、3、6、9、12个月完成问卷，以评估生活质量（采用FACT-B、EQ-5D-5L）、自我效能感（General Self-Efficacy Scale, GSE）、心理疾病负担（GHQ-12，即12项一般健康问卷）、角色与责任（PRRS）以及医疗服务使用情况（成本日记）。

研究结果：110名患者中共有99名完成全部时间节点的随访；32%（35/110）的患者曾接受化疗。化疗组患者的生活质量更差：在随访6、9、12个月时，FACT-B总分的平均差值分别为8.53（95%置信区间：3.42~13.64）、5.38（95%置信区间：0.17~10.58）与8.00（95%置信区间：2.76~13.24）。化疗患者出现心理疾病负担（GHQ-12得分>4）的概率是未化疗患者的5.5倍。该组患者的经济与照护负担（PRRS）更重：9个月随访时的变化平均差值为3.25（95%置信区间：0.42~6.07）。GSE与GHQ-12得分会影响FACT-B总分，提示基线心理疾病负担较高的患者生活质量会出现下降。曾接受化疗、心理疾病负担较重或无法开展日常活动的患者，其医疗服务成本更高。在12个月随访期内，68.2%的患者致电或邮件联系乳腺护理护士，53.3%的患者就诊于医院乳腺专科医师。

研究结论：支持性自我管理路径适用于大多数乳腺癌患者，但曾接受化疗和/或心理疾病负担较重的患者，可能需要更密切的监测与/或支持性干预。新冠疫情（COVID-19）导致的就医途径减少可能对医疗服务使用情况造成了影响。