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.
ObjectiveWe sought to evaluate an electronic referral form to increase referral for genetic risk assessment of women with newly diagnosed epithelial ovarian cancer.MethodsA form summarizing referral for genetic counseling for women with ovarian cancer was introduced into the electronic medical record allowing gynecologic oncologists to electronically submit a request for genetic services. Analysis compared patient and provider characteristics for women newly diagnosed with ovarian, fallopian tube, and primary peritoneal cancer referred 1 year before and after introducing the form. All patients were seen in a single fee-for-service university-based cancer center clinic.ResultsThere were 86 newly diagnosed ovarian cancer patients seen before and 83 seen after the introduction of the electronic referral form. Most lived in the metropolitan area and had stage III to IV disease, serous histology, a documented family history, and a treating oncologist who was less than 10 years from completion of fellowship. Postintervention referral rates increased from 17% to 30% (P = 0.053). Factors best predicting referral were whether the patient was seen after the intervention (P = 0.009), resided in the metropolitan area (P = 0.006), and had been identified as at high hereditary risk (P < 0.0001). Sixty percent of the referred patients participated in counseling. There were no differences in baseline characteristics of the referred patients before and after the intervention.ConclusionsReferral rates increased with the introduction of an electronic medical record referral form suggesting that streamlining the physician referral process might be effective at increasing referrals for cancer genetic risk assessment.
PURPOSE: The Distress Thermometer (DT) includes a measure of cancer-related distress and a list of self-reported problems. This study evaluated the utility of the DT problem list in identifying concerns most associated with distress and poorer quality of life (QOL) in survivors of gynecologic cancer. METHODS: Demographic, clinical, psychosocial functioning, and DT data were described among 355 women participating in a gynecologic cancer cohort. Problems from the DT list were ranked by prevalence, distress, and QOL. Logistic regression models explored factors associated with problems that were common (≥ 25% prevalence) and associated with distress and QOL. RESULTS: The average age of participants was 59.9 years (standard deviation [SD], 10.8 years). Most participants were non-Hispanic white (97%) and had ovarian (44%) or uterine (42%) cancer. The mean DT score was 2.7 (SD, 2.7); participants reported a mean of 7.3 problems (SD, 5.9 problems). The most common problems were fatigue (53.6%), worry (49.9%), and tingling (46.3%); least common problems were childcare (2.1%), fevers (2.1%), and substance abuse (1.1%). Report of some common problems, including tingling, sleep, memory, skin issues, and appearance, was not associated with large differences in distress or QOL. In contrast, some rarer problems such as childcare, treatment decisions, eating, housing, nausea, and bathing/dressing were associated with worse distress or QOL. Younger age, lower income, and chemotherapy were risk factors across common problems that were associated with worse distress or QOL (fatigue, nervousness, sadness, fears, and pain). CONCLUSION: The DT problem list did not easily identify concerns most associated with distress and low QOL in patients with gynecologic cancer. Adaptations that enable patients to report their most distressing concerns would enhance clinical utility of this commonly used tool.
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