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Abstract：
BACKGROUND: Patient reported outcomes (PROs) are being used frequently in clinical practice. PROs often serve several purposes, such as increasing patient involvement, assessing health status, and monitoring and improving the quality-of-care at an aggregated level. However, the lack of representative PRO-data may have implications for all these purposes. This study aims to assess the association of non-administration of (not sending an electronic invite to PRO) and non-response to (not responding to PRO) electronically administered PROs with social inequality in a primary healthcare cancer rehabilitation setting. Furthermore, it examines whether the workflows surrounding PRO have an impact on non-administration and non-response.
METHODS: This is a cross sectional study using routinely collected data from electronic health records and registers including cancer survivors (CSs) over 18 years booked for an initial consultation in a primary healthcare cancer rehabilitation setting using PROs for systematic health status assessment. During the study period two different PRO platforms were used, each associated with different workflows. Non-administration and non-response rates were calculated for sociodemographic characteristics for each PRO platform. Crude and adjusted odds ratios were calculated using univariate and multivariate logistic regression.
RESULTS: In total, 1868 (platform 1) and 1446 (platform 2) CSCSs were booked for an initial consultation. Of these, 233 (12.5%) (platform 1) and 283 (19.6%) (platform 2) were not sent a PRO (non-administration). Among those who received a PRO, 157 (9.6%) on platform 1 and 140 (12.0%) on platform 2 did not respond (non-response). Non-administration of and non-response to PROs were significantly associated with lower socioeconomic status. Moreover, the workflows surrounding PROs seem to have an impact on non-inclusion in and non-response to PROs.
CONCLUSIONS: Non-administration of and non-response to PROs in clinical practice is associated with determinants of social inequality. Clinical workflows and the PRO platforms used may potentially worsen this inequality. It is important to consider these implications when using PROs at both the individual and aggregated levels. A key aspect of implementing PROs in clinical practice is the ongoing focus on representativeness, including a focus on monitoring PRO administration and response.
METHODS: This is a cross sectional study using routinely collected data from electronic health records and registers including cancer survivors (CSs) over 18 years booked for an initial consultation in a primary healthcare cancer rehabilitation setting using PROs for systematic health status assessment. During the study period two different PRO platforms were used, each associated with different workflows. Non-administration and non-response rates were calculated for sociodemographic characteristics for each PRO platform. Crude and adjusted odds ratios were calculated using univariate and multivariate logistic regression.
RESULTS: In total, 1868 (platform 1) and 1446 (platform 2) CSCSs were booked for an initial consultation. Of these, 233 (12.5%) (platform 1) and 283 (19.6%) (platform 2) were not sent a PRO (non-administration). Among those who received a PRO, 157 (9.6%) on platform 1 and 140 (12.0%) on platform 2 did not respond (non-response). Non-administration of and non-response to PROs were significantly associated with lower socioeconomic status. Moreover, the workflows surrounding PROs seem to have an impact on non-inclusion in and non-response to PROs.
CONCLUSIONS: Non-administration of and non-response to PROs in clinical practice is associated with determinants of social inequality. Clinical workflows and the PRO platforms used may potentially worsen this inequality. It is important to consider these implications when using PROs at both the individual and aggregated levels. A key aspect of implementing PROs in clinical practice is the ongoing focus on representativeness, including a focus on monitoring PRO administration and response.
摘要：
背景：患者报告结果（PRO）在临床实践中经常使用。专业人士通常有几个目的，例如增加患者的参与，评估健康状况，以及在总体上监测和提高护理质量。然而,缺乏代表性的PRO数据可能会对所有这些目的产生影响。这项研究旨在评估在初级医疗保健癌症康复环境中，不管理（不向PRO发送电子邀请）和不响应（不响应PRO）电子管理的PRO与社会不平等的关联。此外，它检查PRO周围的工作流程是否对非管理和非响应有影响。
方法：这是一项横断面研究，使用从电子健康记录和登记册中常规收集的数据，包括18年以上的癌症幸存者（CSs），在初级医疗保健癌症康复机构进行初步咨询，使用PRO进行系统的健康状况评估。在研究期间，使用了两个不同的PRO平台，每个都与不同的工作流相关联。计算每个PRO平台的社会人口统计学特征的非给药和无应答率。使用单变量和多变量逻辑回归计算粗比值比和调整后比值比。
结果：总计，预订了1868(平台1)和1446(平台2)CSCS进行初步咨询。其中,233（12.5％）（平台1）和283（19.6％）（平台2）未发送PRO（非给药）。在那些获得PRO的人中，平台1上的157（9.6％）和平台2上的140（12.0％）未响应（无响应）。对PRO的不给药和不反应与较低的社会经济地位显着相关。此外，围绕PRO的工作流程似乎对不包含在PRO中和不响应有影响。
结论：在临床实践中不给药和对PRO无反应与社会不平等的决定因素有关。临床工作流程和使用的PRO平台可能会加剧这种不平等。在个人和汇总级别使用PRO时，必须考虑这些含义。在临床实践中实施PROs的一个关键方面是持续关注代表性，包括重点监控PRO管理和响应。
方法：这是一项横断面研究，使用从电子健康记录和登记册中常规收集的数据，包括18年以上的癌症幸存者（CSs），在初级医疗保健癌症康复机构进行初步咨询，使用PRO进行系统的健康状况评估。在研究期间，使用了两个不同的PRO平台，每个都与不同的工作流相关联。计算每个PRO平台的社会人口统计学特征的非给药和无应答率。使用单变量和多变量逻辑回归计算粗比值比和调整后比值比。
结果：总计，预订了1868(平台1)和1446(平台2)CSCS进行初步咨询。其中,233（12.5％）（平台1）和283（19.6％）（平台2）未发送PRO（非给药）。在那些获得PRO的人中，平台1上的157（9.6％）和平台2上的140（12.0％）未响应（无响应）。对PRO的不给药和不反应与较低的社会经济地位显着相关。此外，围绕PRO的工作流程似乎对不包含在PRO中和不响应有影响。
结论：在临床实践中不给药和对PRO无反应与社会不平等的决定因素有关。临床工作流程和使用的PRO平台可能会加剧这种不平等。在个人和汇总级别使用PRO时，必须考虑这些含义。在临床实践中实施PROs的一个关键方面是持续关注代表性，包括重点监控PRO管理和响应。
