Ravn Sissel, Thaysen Henriette Vind, Verwaal Victor Jilbert, Seibæk Lene, Iversen Lene Hjerrild
Department of Surgery, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99, 8200, Aarhus N, Denmark.
Department of Gynaecology and Obstetrics, Aarhus University Hospital, Aarhus, Denmark.
J Patient Rep Outcomes. 2021 Nov 8;5(1):120. doi: 10.1186/s41687-021-00391-1.
Patient activation (PA) and Patient Involvement (PI) are considered elements in good survivorship. We aimed to evaluate the effect of a follow-up supported by electronic patient-reported outcomes (ePRO) on PA and PI.
From February 2017 to January 2019, we conducted an explorative interventional study. We included 187 patients followed after intended curative complex surgery for advanced cancer at two different Departments at a University Hospital. Prior to each follow-up consultation, patients used the ePRO to screen themselves for clinical important symptoms, function and needs. The ePRO was graphically presented to the clinician during the follow-up, aiming to facilitate patient activation and involvement in each follow-up. PA was measured by the Patient Activation Measurement (PAM), while PI was measured by five indicator questions. PAM and PI data compared between (- ePRO) and interventional (+ ePRO) consultations. PAM data were analysed using a linear mixed effect regression model with intervention (yes/no) and time along with the interaction between them as categorical fixed effects. The analyses were further adjusted for time (days) since surgery.
According to our data, ePRO supported consultations did not improve PA. The average mean difference in PAM score between + ePRO and - ePRO consultations were - 0.2 (95% confidence interval - 2.6; 2.2, p = 0.9). There was no statistically significant improvement in PAM scores over time in neither + ePRO nor - ePRO group (p = 0.5). Based on the five PI-indicator questions, the majority of all consultations were evaluated as "some, much or very much" involved in consultation; providing a wider scope of dialogue, encouraged patients to ask questions and share their experiences and concerns. Nevertheless, another few patients reported not to be involved at all in the consultations.
We did not demonstrate evidence for ePRO supported consultations to improve patient activation, and patient activation did not improve over time. Our results generate the hypotheses that factors related to ePRO supported consultation had the potential to support PI by offering a wider scope of dialogue, and encourage patients to ask questions and share their experiences and concerns during follow-up.
患者激活（PA）和患者参与（PI）被视为良好生存的要素。我们旨在评估由电子患者报告结局（ePRO）支持的随访对PA和PI的影响。
2017年2月至2019年1月，我们进行了一项探索性干预研究。我们纳入了187例在大学医院两个不同科室接受晚期癌症根治性复杂手术后进行随访的患者。在每次随访咨询前，患者使用ePRO对自己的临床重要症状、功能和需求进行筛查。在随访期间，ePRO以图形方式呈现给临床医生，旨在促进患者在每次随访中的激活和参与。PA通过患者激活测量（PAM）进行测量，而PI通过五个指标问题进行测量。比较（-ePRO）和干预（+ePRO）咨询之间的PAM和PI数据。使用线性混合效应回归模型分析PAM数据，将干预（是/否）、时间以及它们之间的相互作用作为分类固定效应。分析进一步根据手术后的时间（天）进行调整。
根据我们的数据，ePRO支持的咨询并未改善PA。+ePRO和-ePRO咨询之间PAM评分的平均差异为-0.2（95%置信区间-2.6；2.2，p = 0.9）。在+ePRO组和-ePRO组中，PAM评分随时间均无统计学上的显著改善（p = 0.5）。基于五个PI指标问题，大多数咨询被评估为在咨询中“部分、较多或非常多”地参与；提供了更广泛的对话范围，鼓励患者提问并分享他们的经历和担忧。然而，另有少数患者报告在咨询中完全没有参与。
我们没有证明ePRO支持的咨询能改善患者激活的证据，并且患者激活也未随时间改善。我们的结果产生了这样的假设，即与ePRO支持的咨询相关的因素有可能通过提供更广泛的对话范围来支持PI，并鼓励患者在随访期间提问并分享他们的经历和担忧。
