REVIEW

Health-related quality of life (HRQoL)

among patients with alopecia areata (AA):
A systematic review
Lucy Y. Liu, BA,c Brett A. King, MD, PhD,a,c and Brittany G. Craiglow, MDa,b,c
New Haven, Connecticut

Alopecia areata (AA) is a common skin disease that is frequently emotionally devastating. Several studies
have examined the effect of AA on health-related quality of life (HRQoL). We performed a systematic
review of all published studies of HRQoL in patients with AA. Eleven studies met inclusion criteria,
incorporating data from 1986 patients. Patients with AA consistently demonstrate poor HRQoL scores, with
greater extent of scalp involvement associated with lower HRQoL. HRQoL experienced by patients with AA
is similar to that seen in patients with other chronic skin diseases including atopic dermatitis and psoriasis.
( J Am Acad Dermatol http://dx.doi.org/10.1016/j.jaad.2016.04.035.)

Key words: alopecia areata; alopecia totalis; alopecia universalis; health-related quality of life; quality of
life; review.

A lopecia areata (AA) is a common autoim-

mune disorder with a lifetime-estimated risk
of 2%.1 AA is a chronic disease, typically
presenting as patches of hair loss involving the scalp
that can progress to alopecia totalis (loss of all
scalp hair) or alopecia universalis (loss of all body
hair). The cause of AA is multifactorial, including
immune-mediated destruction of hair follicles2-4 and
genetic predisposition.5-7
Although AA is often considered to be a medically
benign disorder, there is an associated detrimental
impact on the health-related quality of life (HRQoL)
among patients with AA. Current treatment options
for AAeincluding topical, intralesional, and systemic
corticosteroids; topical immunotherapy; and other
agentsehave limited efficacy.8,9 Recently, Janus
kinase inhibitors have shown promise as a
pathogenesis-based treatment for patients with
AA.4,10
Evidence both from the literature11,12 and from
our own experience treating patients with AA shows
that those affected often experience marked
emotional and psychological distress. Children and
adults often report being harassed, ostracized, stared
at, or assumed to be undergoing chemotherapy
Abbreviations used:
AA:
DLQI:
HRQoL:
alopecia areata
Dermatology Life Quality Index
health-related quality of life
QoL: quality of life
SF-36: Short Form Health Survey
because of their hair loss. They regularly comment,
‘‘I do not feel like myself’’ and often acknowledge
having a lack of confidence because of their disease.
Multiple studies have shown the presence of psy-
chological comorbidities among patients with AA,
including depression and anxiety.13-15 Ultimately,
these factors conspire to negatively impact patients.
This impact can be quantified using HRQoL scores.
Understanding HRQoL is paramount to under-
standing this otherwise ‘‘cosmetic’’ disorder, and it
motivates good patient care and provides a basis for
prioritizing research into AA pathogenesis and
treatment. To our knowledge, there is no review
that specifically assesses HRQoL in patients with AA.
This article provides a systematic review of studies
that assess the impact of disease in patients with AA
using validated HRQoL measures.

From the Departments of Dermatologya and Pediatrics,b Yale
University School of Medicine.c
Funding sources: None.
Conflicts of interest: None declared.
Accepted for publication April 12, 2016.
Reprint requests: Brittany G. Craiglow, MD, Department of
Dermatology, Yale University School of Medicine, PO Box
208059, New Haven, CT 06520. E-mail: brittany.craiglow@yale.
edu.
Published online July 16, 2016.
0190-9622/$36.00
Ó 2016 by the American Academy of Dermatology, Inc.
http://dx.doi.org/10.1016/j.jaad.2016.04.035

1
2 Liu, King, and Craiglow J AM ACAD DERMATOL
n 2016

METHODS abstracts and non-English language, 151 articles

Literature review were excluded. After close reading of the full text
The electronic medical literature databases PubMed, of the remaining 20 articles, 9 more articles were
MEDLINE, Embase, and Web of Science were used to excluded. A review of the bibliographies of the
identify studies using a combination of these search remaining 11 articles yielded 1 additional study to
terms: ‘‘alopecia areata,’’ ‘‘quality of life,’’ ‘‘health related screen, but the study focused on alopecia in
quality of life,’’ ‘‘alopecia universalis,’’ and ‘‘alopecia general, not specifically AA, and was therefore
totalis.’’ The search was limited to English-language excluded. The remaining 11 studies were included
articles. Patents, conference in this review. Key characteris-
abstracts, and book chapters tics and the results of each
were excluded. Results CAPSULE SUMMARY study are summarized in
were screened by title and Supplementary Table I (avai-
d Alopecia areata is often considered to be
abstract for relevance. lable at http://www.jaad.org).
medically benign; however, patients may
Reference lists of included Each of the 11 articles
experience emotional and psychological
articles were reviewed to included used 1 or more of
distress.
identify relevant studies the above-mentioned mea-
that were not captured by d Alopecia areata has a detrimental effect sures to assess HRQoL. Other
our search. Our search was on health-related quality of life similar to indices used in conjunction
conducted in February that of other chronic dermatologic with HRQoL measures
2016. diseases. included Children’s Depression
d Understanding alopecia areataeassociated Index,21 State-Trait Anxiety
Eligibility health-related quality of life is paramount Inventories for Children,21
To be included in this to patient care and emphasizes the brief version of Fear of
review, studies were importance of emerging progress in Negative Evaluation Scale,22
required to use at least 1 research and treatment. Beck Depression Inventory,23,24
standard measure to assess VQ-Dermato Questionnaire,25
HRQoL in patients with AA. and Life Events Scale.24 The
Studies that also investigated other dermatologic total sample size of patients with AA in the 11
disorders in addition to AA were included as long as studies was 1986. Sample sizes of individual studies
distinct HRQoL scores were included for patients with ranged from 23 to 698 patients. One study included
AA. Case reports, studies evaluating new disease- only female patients with AA.26 The mean ages of
specific measures to assess quality of life (QoL), and study participants ranged from 23 to 40 years.
review articles were excluded. Participants in the study that included only children
and adolescent patients with AA had a mean age of
Health-related quality of life 12 years.21
The studies presented in this review examined the
HRQoL of patients with AA. HRQoL is distinct from Mean HRQoL scores
QoL. The World Health Organization defines QoL as Fig 1 depicts mean scores across all 8 domains of
‘‘an individual’s perception of their position in life in SF-36 in studies that used this HRQoL measure. Four
the context of the culture and value systems in which domains, based on 2 or more independent studies’ 3
they live and in relation to their goals, expectations, lowest SF-36 HRQoL scores, suffered as a result of
standards, and concerns.’’16 In contrast, HRQoL is AA: vitality, mental health, role emotional, and
defined as an individual’s capacity to functione social functioning. The least affected domains
physically, emotionally, and sociallyein the face of were role physical, bodily pain, and physical
a medical or health problem.17 We have included functioning.24,25,27-29
studies that use at least 1 measure of HRQoL. These Fig 2 shows mean Skindex scores based on 3
measures, including the Dermatology Life Quality aspects: function, symptoms, and emotion. Skindex
Index (DLQI),18 Skindex-16,19 and Short Form scores were consistently low in the symptoms
Health Survey (SF-36),20 and other indices to assess category. In contrast, Skindex scores were highest
severity of disease, are summarized in Table I. in the emotion category in all 4 studies.22,25,26,29
Mean DLQI scores are depicted in Fig 3. Qi et al31
RESULTS showed that AA had the most impact on
Included articles HRQoL involving embarrassment, social enter-
Our initial search yielded 194 results. Of these, 23 tainment, and shopping or housework. Another
were abstracts, which were excluded. Based on study found that severe forms of AA negatively
J AM ACAD DERMATOL Liu, King, and Craiglow 3
VOLUME jj, NUMBER j

Table I. Health-related quality of life and disease severity indices for evaluating patients with alopecia areata
Severity of AA
Severity of Alopecia Tool42
Developed by the National AA Foundation Working Committee, evaluating both the density and extent of hair loss,
ranging from S0 (0% hair loss) to S5 (100% hair loss).
HRQoL measures and score ranges
Dermatology Life Quality Index18
Self-reported questionnaire composed of 10 questions, assessing effect of skin condition on various aspects of life. Scores
range from 0 (no effect on patient’s life, high HRQoL) to 30 (extremely large effect on patient’s life, poor HRQoL).
Skindex19
Self-reported questionnaire composed of various number of questions, assessing the degree to which an individual is
bothered because of various aspects of skin condition. Scores range from 0 (never bothered, high HRQoL) to 100
(always bothered, poor HRQoL). Three dimensions are assessed: symptoms, emotions, function.

Short Form Health Survey20

Original constructed for use in the Medical Outcomes Study, not specific to skin. Evaluates 8 dimensions of HRQoL,
including physical functioning, role physical, role emotional, bodily pain, social functioning, general health, vitality, and
mental health. Scores range from 0 (poor HRQoL) to 100 (high HRQoL).

Pediatric Quality of Life Inventory Parent and Child Versions43

Used in many disorders, not specific to skin. Evaluates physical function, psychological function, and social function.
Scores range from 0 (poor HRQoL) to 100 (high HRQoL).

AA, Alopecia areata; HRQoL, health-related quality of life.

impacted both the psychological health and the
social life of patients.30
HRQoL of patients with AA versus control
groups
Only 1 study using DLQI included an age- and sex-
matched control group for comparison. In this study,
DLQI scores were significantly higher in patients with
severe AA than in control subjects, indicating a lower
HRQoL in patients with AA.30 No control groups for
comparison were available in studies using Skindex.
Three studies included separate SF-36 scores with
control groups,24,27,28 and 1 study used control group
data extracted from the literature.25 The results of
these studies are shown in Table II.
Patients with AA had poorer HRQoL in role
emotional, mental health, and vitality aspects of
SF-36 compared with control groups, indicating
poor social functioning, higher psychological
distress, and diminished energy levels as a result of
disease.24,25,27,28 Although 3 studies found that
patients with AA had poorer HRQoL in social
functioning compared with control subjects, 1
study found the opposite result.24 The authors
attributed this finding to the fact that their control
group comprised staff from an extremely busy
hospital and that, as a result, it was possible the
group had less time available to participate in social
activities.
HRQoL in the pediatric population
Only 1 study specifically evaluated children and
adolescents.21 The Pediatric Quality of Life (PedsQL)
Inventory, Parent and Child versions, was adminis-
tered to both the patient and the caregiver, most often
the mother. In patients, the mean PedsQL scores were
74.0 overall, 73.4 in physical health, and 74.3 in
psychosocial. Compared with control subjects, lower
HRQoL was observed in pediatric patients (P = .048).
Pediatric patients’ separate physical health and
psychosocial HRQoL scores were not significantly
different from that of control subjects (P = .062 and
P = .082, respectively). In parents, PedsQL scores were
70.3 overall, 68.5 in physical health, and 70.0 in
psychosocial. Compared with control subjects,
parents’ physical health, psychosocial, and overall
HRQoL were poor (P = .039, P \ .001, and P = .001,
respectively).
Factors affecting HRQoL
The factors affecting HRQoL are conflicting
among the studies and include severity of scalp
involvement, concomitant depression, and female
gender.
Several studies showed that increased scalp
involvement was associated with lower
HRQoL.21,22,27,30,31 In contrast, 2 studies found that
severity of scalp involvement did not correlate with
poor HRQoL.26,28 Jankovic et al29 found that severity
4 Liu, King, and Craiglow
Fig 1. Mean Short Form Health Survey (SF-36) scores, overall and for each domain, for patients
with alopecia areata. HRQoL, Health-related quality of life.
of disease only correlated with certain aspects of
HRQoL, including the personal relationship
dimension of DLQI and social functioning
dimension of Skindex; however, they reported no
correlation with any dimension of the SF-36 measure.
Table III depicts DLQI scores for studies that stratified
HRQoL scores based on severity of AA and variants.
Three studies found depression to be associated
with poor HRQoL.21,23,29 Although it is unclear
whether these patients were depressed before the
onset of AA, a study in Iran found that depression
was the highest predicting factor of significant
impairment of HRQoL in patients with AA.23 In the
pediatric study, both anxiety and depression were
found to negatively predict psychosocial HRQoL
scores in the child and parent groups, but not the
adolescent group.21 This group suggested that pre-
adolescent children may be too immature for skills to
cope with the burden of diseases. In addition, the
third study found that patients with depression had
significantly worse AA-related HRQoL scores in
multiple areas of life, including relationships,
emotions, daily activities, and social functioning.29
J AM ACAD DERMATOL
n 2016
Two studies found that female patients with AA
had lower HRQoL than male patients22,27; however,
other studies found no significant correlation
between impaired HRQoL and gender.25,29,30 Other
factors found to correlate with impaired HRQoL
include young age22,27,31 and unmarried status.27
DISCUSSION
Loss of hair occurring in any disease negatively
impacts QoL and is often associated with loss of self-
esteem and psychosocial problems.32 In this review,
we specifically examined HRQoL in patients with AA
and variants. Patients with AA consistently demon-
strate poorer HRQoL than control patients, with
realms such as vitality, mental health, emotion, and
social functioning most negatively affected. Somatic
symptoms such as physical functioning and bodily
pain were least affected. Pediatric patients and their
caretakers also reported poorer HRQoL.
The impact of AA on HRQoL is comparable with
other chronic, relapsing skin conditions such as
psoriasis and atopic dermatitis. DLQI scores of
patients with AA were 5.3 to 13.54,22,23,29-31 which is
J AM ACAD DERMATOL Liu, King, and Craiglow 5
VOLUME jj, NUMBER j

AA vs literature control (N = 60)

Dubois et al,25 2010

73.3 vs 87.0*

64.3 vs 72.2*

58.9 vs 84.1*
64.1 vs 86.3*
49.3 vs 69.7*
54.5 vs 62.4*
88.2 vs 90.3

77.2 vs 77.9
Fig 2. Mean Skindex scores in function, symptoms, and
emotion. HRQoL, Health-related quality of life.

de Hollanda et al,28 2014

AA vs control (N = 37)
Table II. Comparison of Short Form Health Survey scores in patients with alopecia areata versus control subjects

70.608 vs 86.034*
70.270 vs 85.034*
63.892 vs 78.939*
88.514 vs 96.429
87.500 vs 91.122
77.865 vs 83.408
74.297 vs 80.388

61.757 vs 70.102
Masmoudi et al,27 2013
AA vs control (N = 50)

58.17 vs 71.62*

54.60 vs 82.20*
33.33 vs 83.06*
63.64 vs 77.14*
62.40 vs 77.00*
95.50 vs 90.20
93.10 vs 88.30

95.40 vs 89.80

Scores range from 0 (poor health-related quality of life) to 100 (high health-related quality of life).

Fig 3. Mean Dermatology Life Quality Index (DLQI )

scores. HRQoL, Health-related quality of life.

similar to scores for patients with psoriasis (5.83-

13.4)23,33-36 and atopic dermatitis (7.31-10.63).35-37
This is particularly notable given that patients with
AA vs control (N = 52)
uleç et al,24 2004

71.83 vs 55.48*

55.69 vs 67.23*
51.35 vs 59.71*
83.17 vs 78.37
90.19 vs 88.85
65.04 vs 68.14
76.31 vs 77.23

59.83 vs 76.96

AA do not experience physical symptoms directly

related to their disease, whereas patients with atopic
dermatitis and psoriasis commonly experience
pruritus and sleep disturbance, which are well-
G€

known factors affecting HRQoL. These HRQoL scores

are similar to those reported in other hair-loss
conditions, including telogen effluvium, primary
cicatricial alopecia, and androgenic alopecia.26,38
*Statistically significant (P \ .05).

The poor HRQoL in patients with AA may play a

role in the development of psychiatric comorbidities
such as depression, generalized anxiety, and
Physical functioning

Social functioning

AA, Alopecia areata.

obsessive-compulsive disorder. One study found a

Role emotional
General health

39% lifetime prevalence of major depressive disorder

Mental health
Role physical

and a 39% lifetime prevalence of generalized anxiety

Bodily pain

disorder in patients with AA.39 The burden on

Vitality

psychosocial functioning has been shown to be

Study

especially true in children.21

6 Liu, King, and Craiglow
Table III. Comparison of Dermatology Life Quality
Index scores stratified by severity of alopecia areata
Jankovic Al-Mutairi and
et al,29 2016 Eldin,30 2011 Qi et al,31 2015
Mild (\25% 4.72 Extensive AA 13.37 AA 5.2
hair loss)
Moderate 2.31 AT 13.5 AT/AU 8.7
(26%-75%
hair loss)
Severe 7.8 AU 14.1
(76%-100%
hair loss)
Scores range from 0 (no effect on patient’s life) to 30 (large effect
on patient’s life).
AA, Alopecia areata; AT, alopecia totalis; AU, alopecia universalis.
In our experience, we have found that patients
with AA often believe that their concerns are
dismissed; ‘‘it’s just hair’’ is a commonly referenced
phrase. As a result, in addition to distress about their
hair loss, many patients also experience feelings of
guilt or self-doubt, as the ‘‘it’s just hair’’ perspective
can make them think that their associated emotional
suffering is unwarranted or frivolous. Other factors
that we suspect likely contribute to decreased
HRQoL include the lack of reliably effective
therapies, leading to feelings of hopelessness, and
the relapsing and often progressive course of the
condition, creating persistent anxiety about possible
future hair loss.
In conclusion, studies consistently show that
patients with AA experience poor HRQoL compared
with the general population. Importantly, the
negative impact of AA on HRQoL is comparable
with that of other common, chronic dermatologic
conditions such as psoriasis and atopic dermatitis
and therefore warrants a similar level of attention.
Despite being common, AA has historically been
underrepresented in terms of research efforts40 and
funding.41 Although much of this may be related to
the current lack of effective treatment options, there
may be a component of the ‘‘it’s just hair’’ attitude
among health care professionals toward the
condition. As multiple studies have shown, however,
patients experience significant negative effects on
social and emotional well-being and mental health.
AA is not cosmetic but rather is a medical condition
with profound negative health consequences.
Fortunately, scientific understanding of AA is
progressing and effective therapies are now within
reach,4,10 and the Food and Drug Administration
recently selected AA as 1 of 8 diseases to assess as
part of its Patient-Focused Drug Development
Program. We are hopeful that the expanded
understanding of AA-associated HRQoL provided
J AM ACAD DERMATOL
n 2016
here will serve to increase appreciation for the
burden of disease of AA and give further meaning
and importance to emerging progress in treatment.
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Supplemental Table I. Key characteristics and results of included studies examining health-related quality of life among patients with alopecia areata

7.e1 Liu, King, and Craiglow

Sample size of patients
with AA or control subjects
receiving HRQoL survey Results (mean score 6 SD
Study Title Mean age 6 SD, y Measures unless otherwise specified)
Qi et al31 ‘‘Assessing quality of life in alopecia areata N = 698 Patients with AA, age [16 y DLQI DLQI: 5.8 6 5.6
2015 patients in China’’ Mean age = NR
China
Al-Mutairi and Eldin30 ‘‘Clinical profile and impact on quality of N = 300 Patients with severe AA, DLQI DLQI: 13.54, SD not reported
2011 life: seven years experience with patients age [21 y
Kuwait of alopecia areata’’ N = 300 non-AA patients
Mean age = NR
Ghajarzadeh et al23 ‘‘Associations between skin diseases and N = 100 Patients with AA DLQI DLQI: 6.3 6 5.5
2012 quality of life: a comparison of psoriasis, Mean age = 23.02 6 33.4 y SF-36 SF-36: 68.01 6 15.1
Iran vitiligo, and alopecia areata’’
de Hollanda et al28 ‘‘Quality of life in alopecia areata: a case- N = 37 Patients with AA SF-36 SF-36:
2014 control study’’ Mean age = 35.89 6 11.59 y
Brazil N = 49 non-AA patients - Vitality: 61.757 6 22.522
Mean age = 34.63 6 12.49 y - Mental health: 63.892 6 22.161
- Role emotional: 70.270 6 39.113
- Social functioning: 70.608 6 26.552
- Bodily pain: 74.297 6 21.928
- General health: 77.865 6 16.413
- Physical functioning: 87.500 6 13.718
- Role physical: 88.514 6 28.623
Masmoudi et al27 ‘‘Quality of life in alopecia areata: a sample N = 50 Patients with AA SF-36 SF-36: mean = 68.95 6 13.10
2013 of Tunisian patients’’ Mean age = 32.92 6 11.81 y - Vitality: 62.40 6 21.19
Tunisia N = 50 Non-AA patients - Mental health: 63.64 6 16.61
Mean age = NR - Role emotional: 33.33 6 36.26
- Social functioning: 54.60 6 33.75
- Bodily pain: 95.40 6 12.48
- General health: 58.17 6 17.06
- Physical functioning: 93.10 6 12.45
- Role physical: 95.50 6 10.93
uleç et al24
G€ ‘‘The role of psychological factors in alopecia N = 52 Patients with AA SF-36 SF-36:

J AM ACAD DERMATOL
2004 areata and the impact of the disease on the Mean age = 31.53 6 12.61 y
Turkey quality of life’’ N = 52 Non-AA patients - Vitality: 51.35 6 20.68
Mean age = 31.90 6 12.33 y - Mental health: 55.69 6 17.85
- Role emotional: 59.83 6 42.22
- Social functioning: 71.83 6 24.47
Bodily pain: 76.31 6 22.85

n 2016
-
- General health: 65.04 6 19.99
- Physical functioning: 90.19 6 17.15
- Role physical: 83.17 6 29.59
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J AM ACAD DERMATOL
Dubois et al25 Letter to the editor: ‘‘Quality of life in alopecia N = 60 SF-36 SF-36:
2010 areata: a study of 60 cases’’ Mean age = 40.1 6 15.2 y Skindex-29 - Vitality: 54.5 6 20.4
France Non-AA population provided - Mental health: 49.3 6 20.4
by literature search - Role emotional: 64.1 6 39.1
- Social functioning: 58.9 6 29.5
- Bodily pain: 77.2 6 20.7
- General health: 64.3 6 22.7
- Physical functioning: 88.2 6 22.5
- Role physical: 73.3 6 35.0
Skindex-29:
- Emotions: 48.9 6 27.8
- Symptoms: 18.3 6 19.7
- Functioning: 28.0 6 24.6
Reid et al26 ‘‘Clinical severity does not reliably predict N = 23 Female patients with AA Skindex-16 Skindex-16: 58.56 6 3.44 (SEM, not SD)
2012 quality of life in women with alopecia Mean age = NR - Emotions: 82.09 6 3.28
United States areata, telogen effluvium, or androgenic - Symptoms: 25.36 6 3.98
alopecia’’ - Functioning: 52.17 6 6.34
Bilgiç et al21 ‘‘Psychiatric symptomatology and health- N = 74 PedsQL-P and -C PedsQL-C: 78.5 6 10.0
2014 related quality of life in children and Mean age: 12.1 6 2.8 y - Physical health: 78.3 6 14.4
Turkey adolescents with alopecia areata’’ - Psychosocial: 78.6 6 10.5
PedsQL-P: 77.6 6 11.9
- Physical health: 74.9 6 17.7
- Psychosocial: 79.0 6 11.3
Shi et al22 ‘‘Health-related quality of life (HRQoL) in N = 532 DLQI DLQI: 6.8 6 4.7
2013 alopecia areata patientsea secondary No mean age reported Skindex-16 Skindex-16:
United States analysis of the National Alopecia Areata - Emotions: 43.3 6 33.3
Registry Data’’ - Symptoms: 18.8 6 24.2
- Functioning: 30.2 6 30.8
Jankovic et al29 ‘‘Quality of life in patients with alopecia areata: N = 60 Patients DLQI DLQI: 5.3 6 5.5
2016 a hospital-based cross-sectional study’’ Mean age = 37.3 6 14.3 y SF-36 SF-36:
Serbia Skindex-29 - Vitality: 59.3 6 12.4

Liu, King, and Craiglow 7.e2

- Mental health: 50.1 6 6.8
- Role emotional: 65.6 6 42.9
- Social functioning: 70.8 6 27.0
- Bodily pain: 82.3 6 26.3
- General health: 61.1 6 20.5
- Physical functioning: 89.3 6 15.8
- Role physical: 73.1 6 37.0
Skindex-29:
- Emotions: 36.2 6 25.8
- Symptoms: 12.9 6 14.4
- Functioning: 22.0 6 22.6

AA, Alopecia areata; DLQI, Dermatology Life Quality Index; HRQoL, health-related quality of life; NR, not recorded; Peds QL-C, Pediatric Quality of Life Inventory - Child Version; PedsQL-P, Pediatric
Quality of Life Inventory - Parent Version; SD, standard deviation; SF-36: Short Form Health Survey.