Providing Decision Support for Prostate Cancer Through Cancer Registry Contacts

The purpose of this study was to evaluate providing decision support access directly to patients, using contact information from a state cancer registry.

The North Carolina (NC) Cancer Registry provided contacts for 720 NC men diagnosed with prostate cancer and their physicians. Letters to patients were to arrive at least 33 days after the biopsy. The patient letters included access codes for the Personal Patient Profile-Prostate (P3P), a web-based decision aid with efficacy in reducing decisional conflict. Follow-up calls were made if there was no access to the website. Our goals were 50% access, with 50% completing the intervention. Randomly selected users and non-users were contacted for a telephone interview to assess barriers and facilitators to decision aid access.

Of 720, 95 (13.2%) patients reported making a treatment decision before receiving the letter and were removed from the denominator. Eighty-four of 720 (13.4%; CI 13.4 - 16.4) accessed P3P and of those, 82 of 84 (97.6%) completed the questionnaire and 58 of 82 (69%) completed the intervention. White race predicted access to the decision aid. About half of 20 users recounted by telephone that the letter had arrived late; the decision had already been made. The users recounted benefits of the intervention: plain language, clarified concerns, confirmed choice.

Providing access to P3P through a cancer registry resulted in a far lower access rate than expected. User completion rates of the intervention exceeded our expectations. The registry-required period between biopsy date and allowed patient contact may have led to a high ineligibility rate, and/or low access rates to the website.