Objective
Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer.
Methods
Women with ovarian cancer, their families, clinicians and researchers met to identify ways to improve cancer care. A prototype website was created to address advance care planning, focusing on advance healthcare directives (AHD) and palliative care consultation. Patients were recruited from a gynecologic oncology clinic for a pilot randomized controlled trial. Primary outcomes included completion of an AHD and palliative care consultation.
Results
At study completion, 53 women with ovarian cancer were enrolled and 35 completed the study. The mean age at enrollment was 57.9 ± 9.5 years; most were newly diagnosed or at first recurrence. There were no statistical differences in completion of AHD (p = 0.220) or palliative care consultation (p = 0.440) between intervention and control groups. However, women in the intervention group showed evidence of moving toward decision making regarding AHD and palliative care and lower decisional conflict. Women assigned to the intervention, compared to control website, were highly satisfied with the amount (p = 0.054) and quality (p = 0.119) of information and when they accessed the website, used it longer (p = 0.049). Overall website use was lower than expected, resulting from several patient-related and design barriers.
Conclusions
A website providing information and decisional support for women with ovarian cancer is feasible. Increasing frequency of website use requires future research.
A randomized controlled trial was conducted of a web-based intervention to improve advanced care planning in women with ovarian cancer. A secondary analysis of 35 randomized women focused on changes in distress and knowledge about ovarian cancer through distress monitoring and information tailored to patients' cognitive coping style (monitoring, blunting). Pre-/postresults indicated the Intervention group demonstrated lower distress (p = 0.06); blunting was associated with lower depression (p = 0.04); knowledge in both groups was unchanged. Women in the Intervention vs. Control group reported their family was less likely to be upset by cancer information (p = 0.0004). This intervention reduced distress while incorporating patient preferences.
A broad-based research team developed a Health Insurance Portability and Accountability Act (HIPAA)-compliant educational website for women with ovarian cancer to improve the quality of supportive oncology care. Prior to a randomized clinical trial of the website, initial usability testing was implemented to evaluate the website. The initial review found that 165/247 checklist items had sufficient information to allow for evaluation with the website achieving an overall score of 63%. By category, lowest scores were for the Home Page, Task Orientation, Page Layout & Visual Design, and Help, Feedback & Error Tolerance. Major issues thought to potentially impede actual usage were prioritized in redevelopment and the second usability review, conducted by the same expert, saw an improvement in scores. Incorporating usability concepts from the start of development, fulfilling the positive expectations of end-users and identifying technical and personal factors that optimize use may greatly enhance usage of health websites.
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