ZorgKeuzeLab

BackgroundIntegrating outcome information into the process of shared decision-making (SDM) about post-treatment surveillance can enhance its effectiveness. The Breast Cancer Surveillance Decision Aid (BCS-PtDA) integrates risk estimations of patients’ risks for recurrences as well as outcome information on fear of cancer recurrence (FCR). The SHOUT-BC study aimed to evaluate the effectiveness of the implementation of the BCS-PtDA. Patients’ satisfaction with the BCS-PtDA was also evaluated. MethodsAs described in a previously published protocol paper, the study employed a Prospective multiple interrupted time series (ITS) design in which the BCS-PtDA was implemented stepwise into the care pathways of eight Dutch hospitals. ResultsA total of 507 participants completed a questionnaire after their first surveillance consultation which usually takes place approximately one year after surgery. ITS analysis per hospital and subsequent meta-analysis over hospital effects indicated a significant increase in patient-reported SDM from pre- to post-implementation (overall estimated effect: 27.14, 95 % CI: 22.71 to 31.87, p < .0001). Moreover, post-implementation participants (n = 225) reported a more active role in decision-making, decreased decisional conflict, and increased knowledge on the aim and methods of surveillance. Furthermore, a decrease in FCR was seen post-implementation. The self-reported intensity of surveillance schedules decreased slightly and the BCS-PtDA received highly positive evaluations. DiscussionThe implementation of the BCS-PtDA, which integrates outcome information, led to increased patient-reported SDM and an improved quality of decision-making. The BCS-PtDA was evaluated highly positively by participants. Further research should address optimisation of the implementation.

BackgroundAlthough the treatment for breast cancer is highly personalized, posttreatment surveillance remains one-size-fits-all: annual imaging and physical examination for at least five years after treatment. The INFLUENCE nomogram is a prognostic model for estimating the 5-year risk for locoregional recurrences and second primary tumors after breast cancer. The use of personalized outcome data (such as risks for recurrences) can enrich the process of shared decision-making (SDM) for personalized surveillance after breast cancer.ObjectiveThis study aimed to develop a patient decision aid (PtDA), integrating personalized risk calculations on risks for recurrences, to support SDM for personalized surveillance after curative treatment for invasive breast cancer.MethodsFor the development of the PtDA, the International Patient Decision Aids Standards development process was combined with a mixed methods design inspired by the development process of previously developed PtDAs. In the development, 8 steps were distinguished: establishing a multidisciplinary steering group; definition of the end users, scope, and purpose of the PtDA; assessment of the decisional needs of end users; defining requirements for the PtDA; determining the format and implementation strategy for the PtDA; prototyping; alpha testing; and beta testing. The composed steering group convened during regular working-group sessions throughout the development process.ResultsThe “Breast Cancer Surveillance Decision Aid” consists of 3 components that support the SDM process: a handout sheet on which personalized risks for recurrences, calculated using the INFLUENCE-nomogram, can be visualized and which contains an explanation about the decision for surveillance and a login code for a web-based deliberation tool; a web-based deliberation tool, including a patient-reported outcome measure on fear of cancer recurrence; and a summary sheet summarizing patient preferences and considerations. The PtDA was assessed as usable and acceptable during alpha testing. Beta testing is currently ongoing.ConclusionsWe developed an acceptable and usable PtDA that integrates personalized risk calculations for the risk for recurrences to support SDM for surveillance after breast cancer. The implementation and effects of the use of the “Breast Cancer Surveillance Decision Aid” are being investigated in a clinical trial.

BackgroundIn response to an increased need for patient information in congenital heart disease, we previously developed an online, evidence-based information portal for patients with congenital aortic and pulmonary valve disease. To assess its effectiveness, a stepped-wedge cluster randomised trial was conducted.MethodsAdult patients and caregivers of paediatric patients with congenital aortic and/or pulmonary valve disease and/or tetralogy of Fallot who visited the outpatient clinic at any of the four participating centres in the Netherlands between 1 March 2016–1 July 2017 were prospectively included. The intervention (information portal) was introduced in the outpatient clinic according to a stepped-wedge randomised design. One month after outpatient clinic visit, each participant completed a questionnaire on disease-specific knowledge, anxiety, depression, mental quality of life, involvement and opinion/attitude concerning patient information and involvement.Results343 participants were included (221 control, 122 intervention). Cardiac diagnosis (p=0.873), educational level (p=0.153) and sex (p=0.603) were comparable between the two groups. All outcomes were comparable between groups in the intention-to-treat analyses. However, only 51.6% of subjects in the intervention group (n=63) reported actually visiting the portal. Among these subjects (as-treated), disease-specific knowledge (p=0.041) and mental health (p=0.039) were significantly better than in control subjects, while other baseline and outcome variables were comparable.ConclusionEven after being invited by their cardiologists, only half of the participants actually visited the information portal. Only in those participants that actually visited the portal, knowledge of disease and mental health were significantly better. This underlines the importance of effective implementation of online evidence-based patient information portals in clinical practice.