User-Centered Design of Quality of Life Reports for Clinical Prostate Cancer Care

Abstract

Background: Primary treatment of localized prostate cancer can result in bothersome urinary, sexual, and bowel symptoms. Yet clinical application of health-related quality of life (HRQOL) questionnaires is rare. We employed user-centered design to develop graphical dashboards of prostate cancer patients' questionnaire responses that would facilitate clinical integration of HRQOL measurement. Methods: We interviewed 50 prostate cancer patients and 50 providers, assessed literacy with validated instruments (Rapid Estimate of Adult Literacy in Medicine short form, Subjective Numeracy Scale, Graphical Literacy Scale), and presented participants with prototype dashboards that display prostate cancer-specific HRQOL with elements derived from patient focus groups. We assessed dashboard comprehension and preferences in table, bar, line, and pictograph formats with patient scores contextualized with HRQOL scores of similar patients. Results: Health literacy (mean score 6.8/7) and numeracy (mean score 4.5/6) of patient participants was high. Patients favored bar charts (mean rank 1.8, p=0.12 vs line graphs, p<0.01 vs tables and pictographs); providers demonstrated similar preference for table, bar, and line formats (ranked 1st by 30%, 34%, and 34% of providers, respectively). Providers expressed unsolicited concerns over presentation of comparison group scores (n=19, 38%) and impact on clinic efficiency (n=16, 32%). Conclusions: Based on prostate cancer patient and provider preferences, we developed the design concept of a dynamic HRQOL dashboard that permits a base patient-centered report in bar chart format that can be toggled to other formats and include error bars that frame comparison group scores. Inclusion of lower literacy patients may yield different preferences.