53 % of patients have impaired scores on standard measures — Donovan Hair Clinic
The authors of that study used the Dermatology Quality of life index as well as the Hospital Anxiety and Depression Scale to assess FFA. The median total DLQI score was 2 with range, 0-22. The DLQI scoring showed 42 % had no impairment and 42 % had mild impairment. 12 % had moderate and 5 % had severe impairment. Regarding HADS, the mean levels of psychological distress were low (HADS total score) but 19% and 6.3% of the patients had moderate to severe anxiety and depression symptoms, respectively. It should be noted that a HADS score of 0 to 7 is normal. Overall, the study did not find any association with severity of the alopecia and quality of life.
Varghae A et al. 2022
In a new study, authors from Iran also set out to assess quality of life in FFA. Forty-nine patients with FFA were included in the study.
Frontal Fibrosing Alopecia Severity Score Index (FFASI) was used for the determination of disease severity, and patients’ quality of life was measured by the Dermatology Life Quality Index (DLQI) and the Short Form 36 (SF-36) questionnaires.
A Word About the DLQI
DLQI is an approved 10-item self-reported measure of HRQOL in patients with dermatological conditions. Higher scores (total range 0–30) reflect a greater impairment in HRQOL. The questions are classified under 6 headings items:
1) symptoms and feelings (questions 1- 2)
2) daily activities (questions 3- 4)
3), leisure (questions 5- 6)
4) work and school (question 7)
5) personal relationships (questions 8- 9)
6) treatment (question 10)
DLQI scores 0-1 mean no affect at all, 2-5 = low effect, 6-10 = moderate effect, 11-20 = high effect and DLQI score of 21-30 = extreme effect
A Word About the SF-36
The 36-Item Short Form Survey (SF-36) is a common, verified, self reported measure of health. It contains 36 questions which cover eight domains of health: 1) limitations in physical activities because of health problems, 2) limitations in social activities because of physical or emotional problems, 3) limitations in usual role activities because of physical health problems, 4) bodily pain, 5) general mental health (psychological distress and wellbeing), 6) limitations in usual role activities because of emotional problems, 7) vitality (energy and fatigue), and the patient 8) general health perceptions. The SF-36 is often used as a measure of a person or population’s QOL. The scores are between 0 (worst possible health) and 100 (best health). Thus, lower scores reflect a self-perceived lower quality of life.
A Word About the FFASI
FFASI is a validated scoring system for FFA assessment. FFASI assesses the entire hairline, inflammatory frontal band, facial and body hair loss, and associated features. A total score out of 100 can be calculated, representing global disease severity.
Of the 49 patients with FFA, 48 (98%) were female, and only one was male (2%). The age range was 30-65 years old (mean = 45.61) Most of them were married (n=39; 79.6%). Duration of diagnosis was between 6 and 60 months (15.51 ±10.34). FFASI was between 14 and 66 (mean 34.75).
The score of DLQI ranged from 0 and 11 (mean 2.25). (remember that 2-5 = low effect; 6-10= moderate effect and 11-20 = high effect). Overall, DLQI questionnaire helped researchers to illustrate that FFA negatively influenced the HRQOL in 26 (53%) of patients, which was in the “low effect group” in the majority of them (n=22; 84.7%). SF-36 score was between 24.15 and 95.8 (mean 71.41). (Remember that 100 is best health)
The mental health component score of SF-36 was between 21.18 and 95.8 (mean± SD: 69.93 ± 15.53).
There was no significant association between the score of DLQI, SF-36, mental health component of SF-36 with any of the following covariants: age, duration of diagnosis, gender, marriage status, level of education, receiving medicine, employment status, and FFASI score
Facial Papules, Nail and Limb Involvement Affect Quality of Life in FFA
A significant relation was detected between the DLQI score and the presence of facial papules (p: 0.03). The SF-36 score and mental health component score of SF-36 did not have a significant association with facial papules. A significantly higher DLQI score was illustrated in those with nail, or limb, or flexural involvement.
Health Related Quality of Life was negatively affected in 53 % of patient with FFA in Iran. In most cases the effect of the FFA in quality of life was rated as a “low effect”.
It is interesting that FFASI score did not correlate well with HRQL scores. Other studies have shown that extent hair loss does not always correlate perfectly well with effect on quality of life. This was demonstrated with prior FFA studies by Sacedo-Corralo et al. We see this too in some studies of alopecia areata whereby severity of hair loss does not always correlate perfectly with effect on quality of life.
The data show us that facial papules and involvement of the nail and limbs have a significant association with poorer HRQOL. More efforts are needed to understand these issues and attention to improving treatment options.
Varghae A et al. Assessment of health-related quality of life in patients with frontal fibrosing alopecia. J Cosmet Dermatol. 2022 Jun 27.
David Saceda-Corralo et al. Health-Related Quality of Life in Patients With Frontal Fibrosing Alopecia. JAMA Dermatol. 2018 Apr 1;154(4):479-480.