to everyone who participated in the survey series. We had over 300 members answering each of the four surveys and sharing input, ideas, and personal advice. The office is busy summarizing the information to build CARF’s future strategic plan, but we wanted to share just a few snippets of what we’ve learned so far.
Survey participants were 93% female, with an average age of 62 years old. A little over half of the respondents were diagnosed with scarring alopecia between 40 – 60 years of age, followed by 30% being diagnosed in their 60’s or older. The journey from first noticing symptoms to actually receiving a confirmed diagnosis was diverse. Thirty-five percent of respondents said it took two years or more to get a diagnosis as compared to 5% getting their diagnosis within the first month. It was fairly evenly spread among the rest of the respondents – between 2 – 6 months, 7-12 months and then 1-2 years. Most of the respondents started treatment options suggested by their doctors immediately after diagnosis, followed closely by searching the internet for resources and more information. Three quarters of the respondents indicated that the physical loss of their hair bothered them the most versus only one quarter indicating that the emotional toll was the most bothersome. We also learned that patients are actually more comfortable talking about their hair loss than we originally thought. Only 13% of the respondents indicated that they are not comfortable and 87% are either always or sometimes comfortable talking with others about their scarring alopecia diagnosis and experiences. We also learned that our members want to read more about medical and research articles, following closely by clinical trials and available studies and products, tips and tricks for hair care. Nearly half of our respondents own some type of hair piece, topper or wig and 75% are likely to try a new product if it was introduced to them.
This is just a brief snapshot of the data and rich information we received. As you can see, these surveys are a great resource for focusing CARF’s strategy and value for our membership. You can look forward to hearing more about this in the coming months.