Graf J, Simoes E, Wißlicen K, Rava L, Walter C B, Hartkopf A, Keilmann L, Taran A, Wallwiener S, Fasching P, Brucker S Y, Wallwiener M
Department für Frauengesundheit, Universitätsklinikum Tübingen, Tübingen; Forschungsinstitut für Frauengesundheit, Universitätsklinikum Tübingen, Tübingen; Abteilung Psychosomatische Medizin und Psychotherapie, Universitätsklinikum Tübingen, Tübingen.
Department für Frauengesundheit, Universitätsklinikum Tübingen, Tübingen; Forschungsinstitut für Frauengesundheit, Universitätsklinikum Tübingen, Tübingen; Stabsstelle Sozialmedizin, Universitätsklinikum Tübingen, Tübingen.
Geburtshilfe Frauenheilkd. 2016 May;76(5):535-541. doi: 10.1055/s-0042-105872.
Because of the often unfavorable prognosis, particularly for patients with metastases, health-related quality of life is extremely important for breast cancer patients. In recent years, data on patient-relevant endpoints is being increasingly collected electronically; however, knowledge on the acceptance and practicability of, and barriers to, this form of data collection remains limited. A questionnaire was completed by 96 patients to determine to what extent existing computer skills, disease status, health-related quality of life and sociodemographic factors affect patients' potential willingness to use electronics methods of data collection (ePRO). 52 of 96 (55 %) patients reported a priori that they could envisage using ePRO. Patients who a priori preferred a paper-based survey (pPRO) tended to be older (ePRO 53 years vs. pPRO 62 years; p = 0.0014) and typically had lower levels of education (p = 0.0002), were in poorer health (p = 0.0327) and had fewer computer skills (p = 0.0003). Barriers to the prospective use of ePRO were identified in older patients and patients with a lower quality of life. Given the appropriate conditions with regard to age, education and current health status, opportunities to participate should be provided to encourage patients' willingness to take part and ensure the validity of survey results. Focusing on ease of use of ePRO applications and making applications more patient-oriented and straightforward appears to be the way forward.
由于预后往往不佳,尤其是对于有转移的患者,与健康相关的生活质量对乳腺癌患者极为重要。近年来,与患者相关的终点数据越来越多地通过电子方式收集;然而,关于这种数据收集形式的接受度、实用性以及障碍的知识仍然有限。96名患者完成了一份问卷,以确定现有的计算机技能、疾病状态、与健康相关的生活质量和社会人口学因素在多大程度上影响患者使用电子数据收集方法(电子患者报告结局,ePRO)的潜在意愿。96名患者中有52名(55%)事先表示他们可以设想使用ePRO。事先更喜欢纸质调查问卷(pPRO)的患者往往年龄较大(ePRO组53岁,pPRO组62岁;p = 0.0014),教育水平通常较低(p = 0.0002),健康状况较差(p = 0.0327),计算机技能较少(p = 0.0003)。在老年患者和生活质量较低的患者中发现了前瞻性使用ePRO的障碍。考虑到年龄、教育程度和当前健康状况等适当条件,应提供参与机会,以鼓励患者参与意愿并确保调查结果的有效性。关注ePRO应用程序的易用性并使应用程序更以患者为导向且简单明了似乎是前进的方向。