Psychosocial network & patient centered outcomes research
Interview with Dr. Kara Ayers

My name is Kara Ayers. I’m primarily connected to the OI community because I have OI (Type V) myself. My husband has OI as well and we were both fortunate to grow up with the benefits of being socially connected to others in our community. I completed my PhD in clinical psychology and focused my dissertation on the psychosocial aspects of growing up with OI. I’m completing my term as OI Foundation board member. I work in the disability field and serve on the Board of Governors for the Patient-Centered Research Outcomes Institute (PCORI).

One of the greatest advancements in the last decade of research related to OI, has been the recognition that much more than just our bones are impacted by OI. While not as heavily researched, more people are also realizing the psychosocial ramifications (both positive and negative) of our shared and unique lived experiences with OI. Just as psychosocial issues have often been overlooked in research, they are also sometimes overlooked in our treatment because acute issues, like fractures, surgeries, etc., seem to be more pressing needs. Psychosocial issues are also more variable and there’s not as clear of a path for treatment. Some people with OI experience anxiety. Others may have difficulty managing their moods or struggle with fatigue.

There also seem to be positive aspects to growing up with OI, like the ability to repeatedly practice resiliency-building skills as we recover and relearn tasks over and over across our lifetimes. As a researcher, measuring quality or life or even coping skills can be challenging because OI is a unique and rare condition. As a community, some parts of the psychosocial experience have been unifying for some and dividing for others. Some people feel like descriptors like “unbreakable spirit” capture the fortitude of attitude and inner strength of people with OI while others feel like it’s an unattainable expectation that further stigmatizes those who may feel at least temporarily broken. Better understanding our psychosocial experiences and deciding how we might best deal with them as a community is and will always be extremely complex. We are as vastly different as individuals as we are united as a community of at least some shared experiences.

One way we can begin to untangle this complexity is through the identification of psychosocial aspects of OI as important enough to be prioritized for research. Patient-centered outcomes prioritize the wishes of the patients in developing and carrying out new studies. The OI Foundation is exploring these priorities thanks to a grant from Patient-Centred Outcomes Research Institute (PCORI).

This grant focuses on trying new ways to engage the OI community. Through this engagement, our community will determine what’s most important to study. I’m eager to see if psychosocial issues are among those prioritized.

There’s also international work in this area. Through a collaboration with Care for Brittle Bones, co-chairs Ute Wallentin, Claire Hill, and I are establishing a network of experts in psychosocial aspects of OI. The network aims to include professionals with and without OI and those who may not study OI but live with the condition and can provide rich information about the psychosocial experience. We’ll leverage this network to build upon the work already done and identify new areas of research needed.

While we started these large-scale projects long before the COVID-19 pandemic, the relevance of understanding psychosocial aspects of living with OI seems more important than ever. Many of us are struggling with significant anxiety and greater isolation during this time. There’s also hope in the growing number of connections I see beginning to form across my networks. For the last several weeks, I’ve looked forward to a weekend Zoom chat with a few of my close friends with OI from around the world. There are now ways to share a workout with others with OI from 12 countries! And there are educational opportunities for us to talk about mental health and self-care as adults with OI. It’s my hope that everyone in our community can stay safe, healthy, and well during this time. Without overlooking the very difficult and frightening aspects of our shared experience, we can once again call on our resilience skills to carry us through together.

Kara B. Ayers, PhD –