Author: Farheen Khan
In the Fall of 2021, I began pursuing a master’s degree in the SickKids Department of Ophthalmology. Being under the supervision of CRRAB co-lead Dr. Helen Dimaras I was introduced to the concept of patient engagement in research and have been fortunate to have patients involved in various stages of my thesis project thus far. My project focuses on adapting a patient-reported outcome measure (PROM), a questionnaire designed to evaluate health-related outcomes from a patient’s perspective for retinoblastoma survivors and two additional groups of ophthalmology patients.
Currently, no well-validated retinoblastoma-specific PROM exists. However, previous research has identified that treatment outcomes related to appearance are important to retinoblastoma survivors. The FACE-Q is a well-validated PROM that was developed to evaluate such outcomes in patients who had craniofacial surgery. For this project specifically, the aim is to adapt the FACE-Q by interviewing survivors and parents to assess its comprehensibility, comprehensiveness, and relevance to their or their child’s lived and treatment-related experiences. The feedback received from patients is then subsequently analyzed and shared with an interdisciplinary team of scientists, health professionals, and patient partners to discuss how to best modify the PROM based on the study participants’ feedback.
Through designing this study, I have experienced firsthand how much a study can be greatly improved by involving patients as research partners. For instance, while designing my study protocol, I incorporated the patient partners’ feedback to ensure that recruitment would be conducted in a way that would be most comfortable for the participants. While designing my interview guide, in addition to the methodologically relevant probes, I was able to include probes suggested by the patient partner. As someone who primarily learned about retinoblastoma and the other ophthalmologic conditions of interest through scientific literature, these additional probes were different from what I had developed and during the participant interviews I saw that they facilitated richer and more holistic discussions. Also, while designing the consent forms, it was critical for all its content to be conveyed as accurately and simply as possible. Through the patient partners’ input, necessary edits were made to attain this goal.
During the interdisciplinary meetings to discuss the modifications to the PROM, it was interesting to note both the similarities and slight differences between the experiences and opinions of the health professionals and patient partners. As the purpose of the study was to develop a comprehensive and relevant PROM, from both the health care service and the patient perspective, learning to balance these interrelated views through open, collaborative, and inclusive discussions was enriching.
Overall, I have found the patient engagement component of my project to be very fulfilling. It has brought to light how resourceful the lived expertise of patients is in guiding meaningful research.