BH11 Desperate for answers: the need for information at the onset of hair loss

Abstract Misleading or ineffective advice at early stages of alopecia may negatively impact those receiving it, as early detection and treatment are important to minimize the progression and psychological impact of the condition. Understanding the support- and information-seeking behaviour of people with alopecia prior to diagnosis is essential to support effective decision making at this critical time. We surveyed 85 patients with alopecia areata, female pattern hair loss and frontal fibrosing alopecia attending a specialist hair clinic. This study focuses on the actions taken by these patients when their hair loss started and before they received professional medical advice. Patients could complete a paper survey or fill in a survey online (via SurveyMonkey). Ethical approval was obtained from the London – Surrey Research Ethics Committee. Participants described their hair loss episode and how they initially sought advice, and then rated this advice on a five-point Likert scale (very unhelpful, generally unhelpful, neutral, some help, very helpful). Participants could also share their experiences in free-text boxes. Eighty-one participants gave responses detailing their initial reaction to noticing hair loss, with 85% (n = 69) sharing feelings of distress, shock or fear. Commonly expressed was a desire for an explanation. The internet was the most utilized source of information (n = 49), with 73% receiving ‘helpful’ advice and 14% receiving ‘unhelpful’ advice. Patients generally found the internet a good source of information, helping some realize their diagnosis. However, a common experience was the volume of information available feeling ‘overwhelming’ and being unsure what to trust, as well as the large number of products on sale. Hairdressers were the second most solicited source of advice (n = 38); 47% said they were helpful, whereas 34% received unhelpful advice. Some felt their hairdresser gave no useful information or recommended ineffective products to them. Positive experiences were hairdressers providing wigs and signposting to healthcare professionals. Fewer participants used social media (n = 20) and Alopecia UK (n = 15), but when used these resources were rated as helpful (70% and 73%, respectively). Specifically, the ability to connect with others in a similar situation and gain practical advice were valued. These data show the dramatic emotional impact of hair loss when it first occurs, and that various resources are used by patients to help understand their situation. Hairdressers may represent an area for improving the information available to people: signposting with booklets or support group information, or having additional training in recognizing these conditions. Social media and support groups can be effective at supporting patients, but trustworthy resources such as Alopecia UK are underutilized, and would benefit from greater awareness.