Imagine living with a chronic illness that you do not know much about and for which information is not readily available.
This is the daily experience of many people with Degenerative Cervical Myelopathy (DCM) who often find themselves unprepared to take part in decisions about managing their own health. A patient must be adequately prepared and informed in order to make high-quality judgements about treatment, surgical procedures, or adjustments to life with the condition.
With the help of the Evelyn Trust, Myelopathy.org set out to assess the state of patient education in DCM.
We conducted a review of existing educational resources in DCM to better understand the information available to people with this condition. We included scientific publications, videos, health websites, and patient leaflets. Our analysis showed that an overwhelming majority (80%) of resources are geared toward healthcare professionals, leaving patients with limited resources to improve their knowledge. Our published study is available at: A scoping review of information provided within degenerative cervical myelopathy education resources: Towards enhancing shared decision making
We conducted and analysed semi-structured interviews with people with DCM from our online Support Group community and found that most reported having wide-ranging information needs about the condition, its trajectory, treatment, and adjusting to life with residual disability. This study is currently in peer review.
Improving patient education in DCM.
While these findings may seem a bit gloomy, they also represent an opportunity for significant improvement!
Our efforts now turn to address the quantity and quality of information made available to people with DCM throughout their patient journey, starting with the point of diagnosis. We are developing the first DCM Diagnosis Core Information Set to improve the quality of onward health decisions for people newly diagnosed with the condition. Watch our short video explainer to learn more about this:
The diagnosis is just the starting point. Next, we will be working on uncovering the critical decision points along the clinical care of people with DCM. We hope that by doing so we will facilitate the development of education tools that adequately support patients to make the right decisions for them, at the right time.
If you have any queries or would like to participate in this research, please email Irina Sangeorzan at irina@myelopathy.com.