JMIR Publications

ABSTRACT

Background:

There has been a cultural shift toward patient engagement in health with a growing demand from patients to access their results.

Objective:

The Lymphoma InterVEntion [LIVE] trial was conducted to examine the impact of return of individual patient-reported outcome (PRO) results and a web-based self-management intervention on psychological distress, self-management, and satisfaction with information in a population-based setting.

Methods:

Return of PRO results included comparison with age- and sex-matched peers and was built into the PROFILES registry. The self-management intervention is an adaptation of an fully-automated evidence-based intervention for breast cancer survivors. Patients with lymphoma who completed the web-based questionnaire were equally randomized to 1) care as usual (CAU), 2) return of PRO results, and 3) return of PRO results plus self-management intervention. Patients completed questionnaires 9 to 18 months after diagnosis (T0; n=227), after 4 months (T1; n=190), and after 12 months (T2; n=170).

Results:

Of all invited patients, 25% (227/892) were randomly assigned to CAU (n=76), return of PRO results (n=74), or return of PRO results and access to Living with lymphoma (n=77). Return of PRO results was viewed by 77% (115/150) of those with access. No significant differences were observed for psychological distress, self-management, satisfaction with information provision, and healthcare use between patients who received their PRO results and those who did not (P>.05). Usage of the self-management intervention was low (3%; 2/76) and an effect could therefore not be determined.

Conclusions:

Return of individual PRO results seems to meet patients’ wishes, but had no beneficial effects on patient outcome. Also, no negative effects were found when individual PRO results were disclosed, and the return of individual PRO results can be safely implemented in daily clinical practice. Clinical Trial: Netherlands Trial Register NTR5953