Patient-reported outcomes (PROs) were originally developed for clinical trials, where they were incorporated into regular data collection along with biospecimen sampling, testing, or other measures. As a result, PRO instruments could afford to be lengthy – many questions could be asked to capture the fine nuances of symptom severity and functional status.
PROs have since grown into an important tool used by many clinicians as part of routine clinical practice . But using the same PRO instruments developed for clinical trials at the point-of-care has several problems. First, the length of these instruments can place a burden on patients prior to their clinical encounter. Second, the scoring of these instruments can be onerous for the physician, especially when trying to do so between patients. Collectively, this can disrupt the clinical flow, causing delays and frustrations.
This was the situation faced by the Alberta Ocular Brachytherapy Program in Edmonton, Alberta. This program specializes in the treatment of uveal melanoma, the most common form of eye cancer .
Recognizing that PROs can improve the patient-centered care it delivers, physicians with the Alberta Ocular Brachytherapy Program sought out an appropriate instrument to use. Conventional visual impairment PRO instruments were ruled out, because they did not address the anxiety patients often experience when diagnosed with cancer. General cancer-related PRO instruments were ruled out, because they did not ask about vision.
The search for a relevant PRO instrument eventually led to the European Organisation for Research and Treatment of Cancer (EORTC). This is one of the few groups in the world who have developed and validated a PRO instrument for uveal melanoma, the EORTC QLQ-OPT30 (OPT30) . This is a 30-question instrument that covers health factors related to both cancer and vision. However, the OPT30 was originally designed for use in clinical trials, and is intended to be used with the EORTC’s general cancer instrument, the QLQ-C30. Combined, the two questionnaires would have 60 questions, likely placing a burden on patients prior to their appointment at the Alberta Ocular Brachytherapy Program.
To test the potential burden, a convenience sample of ten patients treated for uveal melanoma at the Alberta Ocular Brachytherapy Program were asked to complete the OPT30 with a trained interviewer (outside of their clinical visit). The mean age of participants was 55 years (range 30-81 years). All participants had been diagnosed with uveal melanoma within the last three years and were receiving ongoing follow-up care.
It took, on average, over 22 minutes to complete the OPT30. In addition, many patients felt that it did not cover all of their health issues related to their uveal melanoma. While these issues may have been addressed in the general QLQ-C30, administering it would’ve added considerably more time. Furthermore, physicians thought that aggregating the 30 questions into a summary score would be difficult.
This small exercise demonstrates some of the difficulty in incorporating the collection and analysis of PROs at the point-of-care. Instrument selection must be carefully considered and should not place additional burdens on patients or the care team.
Helya Aghazadeh, B.Sc. is a second year medical student and research assistant for Dr. Ezekiel Weis, Provincial Medical Lead for the Alberta Ocular Brachytherapy Program.