Informing Patients With Esophagogastric Cancer About Treatment Outcomes by Using a Web-Based Tool and Training: Development and Evaluation Study.

BACKGROUND: Due to the increasing use of shared decision-making, patients with esophagogastric cancer play an increasingly important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health-related quality of life. Web-based tools and training programs can aid physicians in this complex task. However, to date, none of these instruments are available for use in informing patients with esophagogastric cancer about treatment outcomes. OBJECTIVE: This study aims to develop and evaluate the feasibility of using a web-based prediction tool and supporting communication skills training to improve how physicians inform patients with esophagogastric cancer about treatment outcomes. By improving the provision of treatment outcome information, we aim to stimulate the use of information that is evidence-based, precise, and personalized to patient and tumor characteristics and is communicated in a way that is tailored to individual information needs. METHODS: We designed a web-based, physician-assisted prediction tool-Source-to be used during consultations by using an iterative, user-centered approach. The accompanying communication skills training was developed based on specific learning objectives, literature, and expert opinions. The Source tool was tested in several rounds-a face-to-face focus group with 6 patients and survivors, semistructured interviews with 5 patients, think-aloud sessions with 3 medical oncologists, and interviews with 6 field experts. In a final pilot study, the Source tool and training were tested as a combined intervention by 5 medical oncology fellows and 3 esophagogastric outpatients. RESULTS: The Source tool contains personalized prediction models and data from meta-analyses regarding survival, treatment side effects and complications, and health-related quality of life. The treatment outcomes were visualized in a patient-friendly manner by using pictographs and bar and line graphs. The communication skills training consisted of blended learning for clinicians comprising e-learning and 2 face-to-face sessions. Adjustments to improve both training and the Source tool were made according to feedback from all testing rounds. CONCLUSIONS: The Source tool and training could play an important role in informing patients with esophagogastric cancer about treatment outcomes in an evidence-based, precise, personalized, and tailored manner. The preliminary evaluation results are promising and provide valuable input for the further development and testing of both elements. However, the remaining uncertainty about treatment outcomes in patients and established habits in doctors, in addition to the varying trust in the prediction models, might influence the effectiveness of the tool and training in daily practice. We are currently conducting a multicenter clinical trial to investigate the impact that the combined tool and training have on the provision of information in the context of treatment decision-making.

Psychologic impact of follow-up after low-risk gestational trophoblastic disease.

OBJECTIVE: To investigate the psychological consequences of hCG measurements during follow-up in patients with low-risk gestational trophoblastic disease. The length of follow-up of patients with molar pregnancy and spontaneous normalization of the hCG level is currently discussed, in consideration of the low incidence of recurrent disease. STUDY DESIGN: Patients registered in the Dutch Central Registry of Hydatidiform Mole between January 2006 and December 2007 were eligible for this study. Patients received a questionnaire containing questions about follow-up and anxiety and stress during this period. RESULTS: Seventy-six patients were eligible for the study. An inverted correlation (r = -0.35, p = 0.003) was found between the age of patients and the level of anxiety. Anxious patients scored higher for fear of recurrence (r = 0.49, p < 0.0001), of infertility (r = 0.40, p = 0.001) and of conceiving again (r = 0.30, p = 0.01). They experienced the measurements as a burden (r = 0.35, p = 0.003). Fewer patients (24%) were insecure before the monthly hCG measurement, compared to 51% during weekly measurements. The majority of women (80%) completed the follow-up and confirmed that they would come for weekly and monthly hCG measurements if it were optional. CONCLUSION: Follow-up after low-risk GTD has psychologic consequences but provides reassurance as well. Therefore, women tend to accept the offered surveillance and refrain from pregnancy. Women with GTD should be counseled about the minor risk of recurrence and the consequences of follow-up.