In clinical care, how do you know if you have done a good job? Clinical practice and research are looking at “patient-reported outcomes” in order to answer that question. The improvement may or may not be meaningful, from the patient’s perspective. Was it worth the time and money to achieve that result? Here’s an example. Your 6 year old patient has amblyopia. The visual acuity of the amblyopic eye with correction is 20/50 (NOTE: amblyopia is not just about visual acuity, but let’s put that aside for now). The child enrolls in a vision therapy program and at its conclusion, the visual acuity has improved to 20/25+…… but have you improved that child’s quality of life? And what about the treatment? does wearing a patch or having atropine drops instilled have an impact on quality of life?
Looking for meaningful changes in patients’ lives? Look no further than Jillian’s Story and Dear Jillian and Fixing My Gaze. But as powerful as these stories are, there is still a need to measure outcomes. That’s why a researcher from The University of Sheffield (UK) has begun working on an instrument to measure the impact of amblyopia treatment from the child’s perspective.
After interviewing 55 children with amblyopia between 3 and 9 years of age, she identified several themes. Here’s how amblyopia and/or its treatment affects children’s lives from the child’s perspective:
- The patch feels funny or makes me uncomfortable, and it hurts when you take it off. The drops sting. And sometimes my glasses pinch my nose.
- Sometimes my friends won’t play with me or I won’t play with them because I think they don’t want to play with me.
- I don’t want the other kids to know I wear a patch because they already call me names.
- Reading and writing is hard.
- I’m not very good at video games especially when I wear the patch. Sometimes even walking is hard!
- Sometimes I am happy that my eye sees better, but wearing the patch or using the drops makes me angry and worried…and FRUSTRATED!
- I fight with my parents about using the patch.
My concern is that mom and dad may not realize the extent of the impact on a child’s life if amblyopia is left untreated! Some children don’t complain; they adapt to their amblyopia by not putting themselves into situations where they cannot be successful. They attempt to “fly beneath the radar” in school, on the playground, and even at home. I know that vision therapy can have a major impact on the quality of life of amblyopic children. And when we have the ability to measure it, I think its going to be huge.