Key Insights
The following are key insights of the data analysis on a 2022 CCI Patient Experience Survey, as analyzed by a PhD Bioinformatics Consultant.
1. Demographics and Diagnosis
The majority of respondents, primarily females, were located in Canada and the USA. Over 50% of participants received a CCI diagnosis by a CCI expert.
2. Knowledge and Duration of Illness
37% admitted having limited knowledge of CCI, while 55% considered themselves to have fair to expert knowledge. The majority of participants have battled their illnesses for over a decade.
3. Onset Triggers
58% attributed their condition to head and neck injuries, while 39% linked it to Ehlers-Danlos Syndrome/Hypermobility disorder. Additional triggers included viral infections (32%) and Mast Cell Activation Syndrome/prolonged allergic reactions (26%).
4. Satisfaction with Medical Investigations
A significant 79% expressed dissatisfaction with their medical investigations.
Spine and Brain Advocate’s CCJ Patient Experience Summary, covers responses from January 1, 2021, to December 31, 2022.
Thank you to the patients who participated in this survey. Their contributions have led to this valuable resource. The insights help drive positive change and awareness.
To dive into more details, explore the CCJ Patient Experience Results 2022 below.
