RESEARCH IS CRITICAL TO SERVING THE CAUSE & THE COMMUNITY
The Largest Survey of CIDP Patients Published in July 2011
A survey was mailed to 2,400 of our patient members in December 2010. The results and conclusion were compelling, and supported what specialists have suspected in recent years. Read below for all the details.
Demographics - 858 surveys were returned from all regions in the United States including Hawaii, Alaska,and Puerto Rico. Average age of respondents was 59 years old, ranging between ages of 9 and 96. Almost 94% of respondents were Caucasian.
Current State of CIDP - Of the patients who responded, 58% described their CIDP as being in the “active” state despite treatment, 24% described themselves as “stable in remission with disability,” and 16% described themselves as “stable in remission without disability.”
Treatment - 703 respondents were currently on treatment, with almost 58% on Immunoglobulin (IVIG) and 23% on Corticosteroids. Immunosuppressive drugs were used by 21% of patients. Plasma exchange was only being used by 4% of patients at the time of the survey.
Adverse Events - Of the three primary therapies, corticosteroids were discontinued by 23% of patients due to adverse events. Over 80% of patients on corticosteroids described themselves as having side effects such as: weight gain (49%), increased blood pressure (29%), hyperglycemia (24%), depression (26%), tremor (26%), osteoporosis (19%), cataracts (18%), and anxiety (3%).
IVIG was discontinued by 7% of patients and plasma exchange was discontinued by 4%. More than 60% of plasma exchange patients experienced chronic indwelling of catheters or ports. 13% had at least one episode of sepsis.
These data suggest that immunoglobulin is the safest and best tolerated of the primary therapies for CIDP.
Treatment Correlated with Remission as a Measure of Outcome - The average time between symptom onset and diagnosis/treatment was significantly different between patients who described their CIDP as “stable in remission with disability” (1 year) and those that described themselves as “stable in remission without disability” (5 months). In addition, patients who described their CIDP as in the “active or progressive” state the gap between symptom onset and treatment averaged 1.7 years.
Smaller intervals of time between symptom onset and treatment in CIDP patients correlated with halting disease progression and disability. Poorer outcome correlated with decreased motor function such as the ability to climb a flight of stairs, as well as increased pain severity. Quality of life survey showed that even moderate pain and altered emotional health interfered with physical and social activities.
Conclusion - This survey represents the largest CIDP survey completed in the U.S. and possibly the world. Though not necessarily representative of all ethnicities, there are conclusions that can be made based on the data:
- Immunoglobulin treatment is the most commonly used treatment for CIDP in the USA
- Smaller intervals of time between symptom onset and treatment in CIDP patients correlated with halting disease progression and disability.
- Poorer outcome correlated with decreased motor function such as the ability to climb a flight of stairs, as well as increased pain severity.
- Quality of life survey showed that even moderate pain and altered emotional health interfered with physical and social activities.
Please note that this article represents a summary of the full report released by Dr. Carol Lee Koski, Medical Director, GBS/CIDP Foundation International on July 16, 2011.
Expert diagnosis & management of inflammatory neuropathies is critical to our patients. This is what our medical advisory board members had in mind when setting up the new Centers of Excellence program. A year later, we continue to add healthcare facilities providing exactly that.
