Development and pilot of an advance care planning website for women with ovarian cancer: A randomized controlled trial

Abstract

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.

Tools to Promote Shared Decision Making in Serious Illness

“…The authors examined an ACP workbook and found a significant increase in the discussion of ACP with health care practitioners (64% vs 28%; P < .001) and in documentation of living wills (48% vs 23%; P < .001). Finally, a poor-quality small RCT 45 tested a website to promote ACP and palliative care consultation for women with ovarian cancer. This small study found no effect of the website tool on advance directive completion or palliative care consultation.…”

Behavioral Stage of Change and Dialysis Decision-Making

“…Patients progressing one SoC during the first 1 month of treatment can double their chances of action (13). The SoC model has been used in multiple disciplines to aid patients in making difficult decisions about many conditions, including renal transplantation (14)(15)(16)(17)(18)(19)(20). The aims of this study were to (1) develop an SoC tool to measure patient readiness for dialysis modality decision-making, (2) determine associations between SoC and dialysis modality decision-making, and (3) determine additional factors associated with both SoC and dialysis decision-making.…”

Attentes des patientes atteintes d’un cancer de l’ovaire. Résultats de l’enquête européenne EXPRESSION III chez les patientes françaises du groupe GINECO (Groupe d’investigateurs nationaux pour l’étude des cancers ovariens et du sein)

“…Dans une étude australienne, la tenue d'un cahier de suivi des marqueurs améliore la communication entre le médecin et la patiente [16]. L'amélioration des connaissances des patientes sur leur maladie et leurs traitements passe sans doute aussi par la remise de documents écrits, comme le demandent nos patientes, au travers de guides pratiques disponibles dans leur centre de soins ou sur internet, comme le montrent des expériences parfois anciennes [17] ou plus récentes [18]. En France, les moyens disponibles sont multiples : guide ecancer, dispositif d'IDE d'annonce pour la répétition des informations et la vulgarisation des propos médicaux, documents remis avec les informations sur les effets secondaires, les guides destinés au patient de l'ESMO ou édités par l'INCa, ainsi que de multiples documents réalisés par les services de soins oncologiques.…”