Preliminary testing of a just-in-time, user-defined values clarification exercise to aid lower literate women in making informed breast cancer treatment decisions

Abstract

Objective: To report on the initial testing of a values clarification exercise utilizing a jewellery box within a computerized patient decision aid (CPtDA) designed to assist women in making a surgical breast cancer treatment decision.

Design: Pre-post design, with patients interviewed after diagnosis, and then after completing the CPtDA sometime later at their preoperative visit.

Sample: Fifty-one female patients, who are low literate and naïve computer users, newly diagnosed with early stage breast cancer from two urban public hospitals.

Intervention: A computerized decision aid that combines entertainment-education (edutainment) with enhanced (factual) content. An interactive jewellery box is featured to assist women in: (1) recording and reflecting over issues of concern with possible treatments, (2) deliberating over surgery decision, and (3) communicating with physician and significant others.

Outcomes: Patients' use of the jewellery box to store issues during completion of the CPtDA, and perceived clarity of values in making a treatment decision, as measured by a low literacy version of the Decisional Conflict Scale (DCS).

Results: Over half of the participants utilized the jewellery box to store issues they found concerning about the treatments. On average, users flagged over 13 issues of concern with the treatments. Scores on the DCS Uncertainty and Feeling Unclear about Values subscales were lower after the intervention compared to before the decision was made.

Conclusions: A values clarification exercise using an interactive jewellery box may be a promising method for promoting informed treatment decision making by low literacy breast cancer patients.

Figures

Figure 1

Schematic diagram depicting a user's interaction with components of the ‘A Patchwork of Life’ system.

Figure 2

Screen shot from interactive learning module D where viewer can either store inside the jewellery box the current treatment description (e.g. possibility of blood clots in the legs) as it appears on the mirror or move on to the next issue by clicking on the flowers.

Figure 3

Screen shot of the learning environment within ILM F where the user has opened the jewellery box to review, reconsider, and possibly delete issues of concern that were selected while viewing the mastectomy section. For example, by clicking on one or more of the items that appear on the screen, the user may delete the item from her personalized list of concerns.