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Br J Dermatol 2023; 00:1–9
https://doi.org/10.1093/bjd/ljad054
Advance access publicat ion date: 2 June 20 23 Outc omes an d Quali tati ve Rese arch
Accepted: 28 February 20 23
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Beyond health-related quality of life: initial psychometric
validation of a new scale for addressing the gap in
assessing the full range of alopecia areata psychosocial
burden
Kristina Gorbatenko-Roth ,1,2 Sarah Wood,2 Mattea Johnson,1 Irmina Wallander ,1 JaimeNugent1
and Maria Hordinsky 1
1Department of Dermatology, University of Minnesota, Twin Cities, Minneapolis, MN, USA
2Department of Psychology, Universit y of W isconsin-Stout, Menomonie, WI, USA
Correspondence: Kristina Gorbatenko-Roth. Email: gorbatenkok@uwstout.edu
Abstract
Background Patients with alopecia areata (A A) report a broad range of psychosocial outcomes beyond those assessed in existing health-
related quality of life measures. Yet, to date, no psychometrically validated scale based on patient-repor ted outcomes (PROs) appears to exist
to comprehensively measure these AA-specific psychosocial outcomes.
Objectives The objective of this study was to develop such a scale, the Sc ale of Alopecia Areata Distress (SAA D), and to provide its initial
validation evidence.
Methods Using existing qualitative research on PROs for patients with AA, a pool of 144 items was generated and subsequently reviewed
for relevance, redundancy, clarity and comprehensiveness by subject matter exper ts in A A psychosocial impacts and the research team. This
review resulted in a reduced pool of 122 items, which was then administered to adult patients with AA residing in the US A. Explorator y Factor
Analysis using Principal Axis Factoring extraction with oblique rotation identified the SAAD’s underlying factor structure. To reduce the SA AD
item length, additional item-reduction strategies were used.
Results There were 392 participants who responded to the 122 items, each with four or fewer missing item responses. Three iterations of
the data analysis plan resulted in a 41-item SAAD with seven underlying factors of psychosocial impact: Emotional and Cognitive Functioning,
Romantic Relationships, Family Relationships, Primary Life Responsibilities, Non-Primary Life Responsibility Activities, Stigma, and Self-
Perception Change. Each factor demonstrated acceptable to high levels of internal consistency reliability.
Conclusions Initial validation evidence of the S AAD-41 scale supports its potential as a comprehensive measure of AA -related psychosocial
distress for US-based adults. Further scale validation is needed.
What is already known about this topic?
• Although most patients with alopecia areata (A A) report a broad range of negative psychosocial consequences of hair loss on their
lives, no validated AA -specific measure based on patient-repor ted outcomes (PROs) appears to exist for comprehensively assessing
this psychosocial disease burden.
What does this study add?
• We now have initial psychometric validation evidence of a novel, A A-specific measure for assessing a broad range of AA psycho-
social PROs.
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2Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
The greatest suffering from alopecia areata (AA) is not
from the physical pain of hair loss, but the psychosocial
pain. These pains, or burdens, are varied, touching on most
aspects of life, such as identity, interpersonal relationships/
intimacy, social interactions, occupational functioning and
engagement in desired life roles. The high level of psycho-
social burden from AA is evident, as it is consistently docu-
mented in the research literature and found for all severity
subtypes: A A, alopecia totalis (AT) and alopecia universalis
(AU).1–14 Yet at the time of research commencement, a loom-
ing limitation in AA treatment research and clinical practice
was the relative lack of a validated scale, a ‘gold standard’,
to measure the psychosocial patient-reported outcomes
(PROs) for patients with AA.4,15–17
To develop such a scale, best practices in PRO scale
development require the process to begin with the patient’s
voice, through qualitative research.18–20 In 2018–2019, 20
adult patients with AA engaged in one -on-one conversa-
tions with a behavioural health provider integrated into a
hair-disease dermatology clinic.21 The focus of the conversa-
tion was how AA impacted their lives. From these conversa-
tions, themes related to the AA psychosocial PRO (P-PRO)
were identified. Examples include avoiding physical activity,
identity loss, hiding hair loss, emotional distress, and fear
of others noticing.22 In 2020, qualitative interviews with 45
patients with AA aged 15–72 years resulted in a concep-
tual model of AA burden, with five underlying domains of
psychosocial burden/impact identified: social and lifestyle,
relationship, psychological, perceived/actual stigmatization,
and emotional. Subdomains were also identified.13
Using the AA P-PRO themes and domains identified, and
scale development best practices,18,23 the authors of the
present study engaged in the creation and initial psycho-
metric validation of a comprehensive quantitative scale of
AA P-PRO, the Scale of Alopecia Areata Distress (SA AD).
This paper presents initial evidence of the SAAD’s content
validity, internal consistency reliability, and construct validity,
the latter assessed by factor analysis. During the validation
process, attempts to maximize clinical feasibility by limiting
scale length were incorporated.
Methods
Based on the (sub)domains and themes identified in previ-
ous qualitative research an item pool of 142 unique ques-
tions was developed. Each item had the introductory prompt
(i.e. ‘Due to having AA, over the past month, how much have
you been bothered by ____?’) and response options (i.e.
‘Not at all bothered’, ‘Slightly bothered ’, ‘Somewhat both -
ere d ’, ‘Very bothered’ or ‘Extremely b othere d’ ). A 1-month
recall period was selected as frequency of item occurrence
may vary, with some theoretically salient items occurring
less regularly than others (e.g. overt stigmatization).
Assessing the content validity of the Scale of
Alopecia Areata Distress item pool
Participants
The 142-item pool was reviewed by six subject matter
experts (SMEs) in AA P-PROs, consisting of two adult
patients with severe AA who ser ve as National Alopecia
Areata Foundation (NAAF) support group leaders, two der-
matologists with expertise in treating AA , and two former
NAAF administrators. The subsequently revised item pool
was pilot-tested by three adult patients with AA who serve
as AA patient advocates.
Process
SMEs independently reviewed the item pool in terms of
relevance, clarity and item redundancy. To identify missing
AA P-PRO content, open-ended questions were asked to
explore the comprehensiveness of the item set. On comple -
tion of the SME review and subsequent item-pool revision,
the revised item pool was pilot-tested by patients for clarity
of directions and items, and occurrence of administrative
issues, through open- ended qualitative questions. A review
by the University of Minnesota (UMN) Institutional Review
Board (IRB) deemed the above as ‘not human subjects
research’.
Data analysis plan
Items were firstly reviewed by SMEs for redundancy. If two
or more reviewers perceived content overlap in any given
item pair, each item of the pair was further discussed by
the research team, with the likely removal of one item. The
collective set of retained items were then assessed for
relevance. Items deemed as not relevant by two or more
reviewers were subsequently inspected for item clarity.
This was done to ensure the item was clearly understood
before being removed as irrelevant. If the item was found
to be clearly written, defined as fewer than two reviewers
indicating lack of clarity, it would be removed. But, if the
potentially irrelevant item was identified as being unclear by
two or more reviewers, the item was retained and the pro-
cess outlined below for enhancing item clarity was followed.
To enhance item clarity, a two-step process was used.
Firstly, items found unclearly written by two or more SMEs
were identified. Each was then inspected and revised
through minor word edits. Reviewers’ comments for
enhancing item clarity were used to guide the revisions.
Secondly, each item was reviewed by the research team, for
What are the clinical implications of the work?
• To understand the type and amount of distress any given individual patient with AA is uniquely experiencing, it is recommended that
a comprehensive psychosocial distress measure be administered to the patient during clinic, both at intake and subsequent follow- up
appointments, the latter dependent on the patient’s current emotional presentation.
• Doing so should help dermatologists identify which of their patients are in need of additional emotional/mental health support.
Further research is needed to fully validate the Scale of Alopecia Areata Distress for this purpose.
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3
Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
grammatical alignment with the introductory item prompt
and P-PRO domain for which it was intended. Lastly, to
ensure comprehensive coverage of the domain of AA psy-
chosocial distress, comments from the SMEs and research
team members regarding missing content guided new item
development.
Qualitative analysis was performed on pilot-test
responses.
Assessing the Scale of Alopecia Areata Distress
factor structure, internal consistency reliability,
item relevance and frequency of occurrence
Participants
The participants were adults with a diagnosis of A A/AT/AU
residing in the USA at the time of the study. Minors were
excluded, as well as persons without an A A/AT/AU diagno-
sis, those currently residing outside the USA, those unable
to understand written English, and/or persons with dimin-
ished capacity in ability to comprehend the related study
content.
Process
On completion of the SME review and revision, the revised
SAAD item pool was administered through a secure online
survey application (Qualtrics, Provo, UT, USA)24 or via paper
copies on request. Items were administered in blocks, with a
block containing items similar in content. Prior to presenting
any given block, a brief definition of the block was provided
(e.g. Primary Responsibilities are how you spend most of
your time outside of social and leisure activities. Think about
what this is for you. Some examples are work, school, vol-
unteering or caregiving responsibilities). After administration
of each block, participants were queried on item irrelevance
through an open- ended question. Frequency of item occur-
rence over the past month was assessed using response
options of Never (1), Rarely (2), Sometimes (3), Often (4)
and Always (5); each participant was randomly administered
a subset of the 122 frequency-related items. Demographic
and AA disease-related information was also gathered.
Participants were recruited through the NAAF and hair
clinics at a large Midwestern university. For the former, a
NAAF- administered email introducing the study was sent to
persons on the NA AF email list who were living in the USA.
Two follow-up emails requesting participation were also
sent. For the latter, patients of the co-principal investigator
received a letter via US Post and a follow-up phone call invit-
ing them to participate in the study. In addition, participants
from past research studies who opted in for future research
were contacted. Exclusion criteria were assessed via initial
survey items. UMN IRB approval was received.
Data analysis plan
To be included in the factor analysis, a participant needed
to have fewer than 10% missing responses to the 122-item
SAAD, with the missing items deemed random. Missing
items were defined as intentional (i.e. nonrandom) when
there was more than one missing item related to the same
content (e.g. romantic partners), numerous missing items
from the same block (e.g. primary life responsibilities), or
when the respondent provided qualitative data indicating the
item was not applicable to them.
To identify the underlying factor structure of the SA AD
item set, an Exploratory Factor Analysis using Principal
Axis Factoring extraction with oblique rotation (Oblimin)
and pair-wise deletion was performed.18,25 To determine
the maximum potential number of factors underlying the
item set, both eigenvalues and Scree plots were evaluated.
Regarding the former, the eigenvalue had to be > 1.0; for the
latter, factors retained were those just prior to the point of
curve flattening. Each potential factor was then evaluated
in terms of item loadings. To be deemed a factor, at least
one item needed to meet the following criteria: item-factor
loading ≥ 0.4 and cross-loadings < 0. 32.18,25 To capture the
essence of the latent construct undergirding each factor,
the content of the set of items loading on a given factor was
qualitatively reviewed. The common theme connecting the
set of items was then designated as the factor name.
To assess the internal consistency reliability of the items
associated with each factor, Cronbach’s α procedures were
performed. Established criteria were used: 0.7 ≤ α < 0.8
was considered acceptable, 0.8 ≤ α < 0.9 good, and α ≥ 0.9
excellent.26
To achieve the goal of SAAD practicality, additional
item-reduction strategies were used: specifically, items
increasing the α-value when deleted were removed.18 For
factors with more than five items, bivariate correlations
among items within each factor were run to identify items
effectively redundant in terms of content. Within each fac-
tor, high bivariate correlations (r ≥ 0.8) were reviewed. If
the two variables were logically related in terms of content,
with one item more general in nature, the general item was
retained and the item theoretically subsumed by the retained
item was removed (e.g. item ‘being physically absent from
your primary responsibilities’ would subsume item ‘being
physically absent from your primary responsibilities due to
concern your AA will be noticed ’).The data analysis plan
occurred iteratively, until a stable factor structure was met
across two iterations.
For the resulting reduced-item SAAD, item irrelevance
was analysed by the percentage of respondents endorsing
lack of personal relevance (i.e. irrelevance), and frequency
of monthly item occurrence by descriptive analysis. An esti-
mated completion time was calculated based on the com-
pletion time for all queried items. IBM SPSS Statistics for
Windows (v. 27.0) and Microsoft Excel (v. 2210) were used
for quantitative analyses.27,28
Results
Assessing content validity of Scale of Alopecia
Areata Distress item pool
After completing the planned analyses, the item pool was
revised from 142 to 122 items: 37 items were clarified,
25 were removed (24 due to redundancies, one to irrele-
vance) and five were added to increase comprehensiveness.
Collectively, the item set was found to be relevant and a
comprehensive set of P-PROs, demonstrating content valid-
ity evidence of the 122-item SAAD. Findings further support
item clarity and removal of redundancy. Detailed informa-
tion of the revision process is provided in Appendix S1 (see
Supplementary information). Patient pilot-testing indicated
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4Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
SAAD general directions and item descriptions were under-
standable, with no administrative issues.
Assessing Scale of Alopecia Areata Distress factor
structure and internal consistency reliability
In total, 695 persons consented, of whom 529 met eligibility
requirements: 126 had unknown eligibility as they provided
no responses after consenting; 40 were removed due to
known ineligibility (not passing inclusion screens). Of these
529, 392 met eligibility and completed the required number
of responses to be included in the factor analysis, resulting
in a 74% completion rate for participants of known eligibility,
60% for potential eligibility. The mean number of missing
item responses for the 392 participants was 1, range 0–4.
Tab le 1 lists participant demographics and AA disease his-
tory characteristics.
Across the 122 items, the average percentage of partici -
pants endorsing a level of bother as greater than or equal to
‘somewhat’ was 39%; for ‘very bothered or more’, it was
26%. No ceiling effects were found. Floor effects were
deemed not to have occurred as the item response option
contained a true zero, or absence of the measured impact
(i.e. ‘not at all bothered’).
Three iterations of the planned data analysis process
were done. For each iteration, Table 2 lists the number of
items entered, the number of factors meeting factor and
item-loading criteria, percentage of total item variance
accounted for by the identified number of factors, internal
consistency reliability of the item loading on each factor, and
number of items removed due to either α-value increasing
when deleted or high bivariate correlations. It is important
that the same seven factors were consistently found in each
factor analysis iteration. Table 3 presents the factor loadings
of the items from the final factor analysis.
After the third iteration, a 41-item item set resulted. For the
SAAD-41, Table 4 lists the seven factors, number ofitems
loading oneach, Cronbach’s α, and examples of associ-
ated items. For all 41 items, irrelevance was reported by
10% or less of participants, with 75% of items having less
than 5.7% irrelevance (range 1–10%, mean 4.2%, median
4.1, SD 2.32). The average frequency of item occurrence
ranged from 1.5 to 3.7 (mean 2.4, SD 0.5); only three items
had a mean ≥ 3 (i.e. ‘Sometimes’) on the 5-point scale. The
estimated mean time to complete the SAAD -41 is 5.3 min
(median 4.3), with 85% of respondents expected to com-
plete it within 8 min.
Discussion
In 2021, the Alopecia Areata Consensus of Experts group
recommended measurement of health-related quality of life
(HRQoL) be included in clinical trials.29 Yet, at this time, the few
existing HRQoL/psychosocial A A-specific scales had limited
psychometric validation,16,17,30 such that the 2021 European
Academy of Dermatology and Venereology Task Force on
Quality of Life and Patient Oriented Outcomes encouraged
further development and validation of such scales.17 It is
understood now that the PRO scale validation should include
the patient’s voice.18–20 Unfortunately, the existing measures
Table 1 Participant demographic and alopecia areata disease history
characteristics (N = 3 92)a
Characteristics Values ()a
Average age (n = 392), years (range) 50.56 (18–81)
Gender identity%
Female 85.5
Male 13.8
Nonbinary 0.26
Transgender female 0.26
No response 0.26
Spanish/Hispanic/Latino%
Ye s 6.9
No 92.3
No response 0.77
More than one race%
Ye s 2
No 98
Race, n (%)
American Indian or Alaska Native 6 (1.5)
Asian 6 (1.5)
Black or African American 40 (10.2)
Native Hawaiian or Other Pacific Islander 1 (0.26)
White 333 (84.9)
Prefer not to answer 10 (2.6)
Prefer to describe 4 (1.0)
No response 0
Education level%
Less than high school 0.8
High school graduate or equivalent 7. 1
Some college but no degree 1 7. 3
Associate’s degree 11. 2
Bachelor’s degree 30.9
Master’s degree 26.0
Doctoral degree 3.6
Professional degree 2.8
No response 0.26
Relationship status%
Married 56.1
Never married 20.4
Living with a domestic partner 4.3
Divorced 13.5
Separated 1. 3
Widowed 3.1
Prefer not to answer 1. 0
No response 0.26
Recruitment organization%
NAAF 73.0
UMN 14.5
Both 11. 5
No response 1. 0
Average age of onset (n = 386), years (range) 29.92 (1–73)
Average disease duration (n = 385), years (range) 20.77 (0–76)
At its worst, which type of AA did you have?%
Areata 35.7
Totalis 12.5
Universalis 49.2
Other 2.6
No response 0
Current scalp coverage%
Full coverage 6.6
A lot of coverage 16.1
Some coverage 1 7. 3
A little coverage 18.6
No coverage 41.3
No response 0
Current AAtreatment being sought%
Dermatological treatment 33.4
Alternative treatments 10.7
aUnless other wise noted. AA , alopecia areata; NAA F, National Alopecia
Areata Foundation; UM N, University of Minnesota.
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5
Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
pre-2021 had been ‘… developed on limited to no patient
involvement…’ (Aldhouse et al., p. 10),13 thus not adequately
representing the experience of patients with AA.15
To address this gap, the present study used recently
gathered qualitative data provided by patients with AA to
develop a broad scale of AA psychosocial PRO, the SAAD.
Following scale development best practices, the content
validity of a 122-item set was evidenced.
For most items, only approximately a third endorsed
higher distress levels. This aligns with existing HRQoL
assessments, for although 77% of adult patients with A A
endorse Dermatology Life Quality Index (DLQI) impair-
ments,31 the majority experience mild impairment, with only
a third experiencing more severe distress.32
To increase administration feasibility during busy derma-
tology clinics, an iterative process was used to decrease the
scale length. The result was the 41-item SA AD, measuring
seven underlying factors of AA P-PRO: six factors demon-
strated excellent internal consistency, the seventh good.
The estimated completion time for the SA AD - 41 appears
practical for real-world clinic administration, for patients
could probably complete it while waiting for their appoint-
ment. Further, the expected completion time aligns with the
36-item SF-36, among the most widely used HRQoL meas-
ures in medicine,33–35 and is similar or just slightly longer
than frequently used and recommended psychosocial out-
come measures in AA care: the DLQI, Scalpdex and the
Alopecia Areata Symptom Impact Scale (A ASIS).17,36–38
The same seven factors were found with each fac-
tor analysis iteration. Six were strong factors with stable
item loadings across iterations: impacts on Emotional and
Cognitive Functioning, Romantic Relationships, Family
Relationships, Primary Life Responsibilities, Non-Primary
Life Responsibility Activities, and Stigma. One factor, Self-
Perception Change, was also found across factor analysis
iterations, but was weaker. For an extended discussion of
the factor analysis results, see Appendix S2 (Supplementary
Information).
The SAAD uses a 1-month recall period, which, when
compared with a 1-week recall period, may introduce
recall bias.19 Yet, to accurately measure a construct, the
recall period needs to align with the frequency of construct
occurrence.19,39 For most SAAD-41 items, the average fre-
quency of item occurrence over the past month was less
than ‘Sometimes’. If any given experience occurred weekly,
frequency response options of ‘Often’ or ‘Always’ over a
1-month period would be expected. Thus, using a 1-week
recall period would probably not capture a patient’s fully
lived experience of recent psychosocial distress. This is
clinically important, as a 1-week recall period may result
in false-negative determinations of patients’ psychosocial
wellbeing. Also, partially alleviating the concern of recall
bias is the high personal salience of psychosocial distress.
Research demonstrates that the more salient a construct
is, the less likely it is to be forgotten.39 Being rejected by
a family member or a romantic partner, experiencing overt
stigma in a social setting, or having to leave work because
of one’s AA are understandably highly salient events.5,12,40–42
Content validity of the SA AD -41 was demonstrated
through multiple means. Firstly, no scale item was reported
as irrelevant by more than 10% of the patients with AA,
indicating that most participants found all items relevant.
Secondly, although prevalence of item endorsement was
not considered in the data analysis plan, the SAAD-41 pre-
dominantly contains items most frequently endorsed by
patients with AA or items that are strongly correlated to
highly endorsed items. Thirdly, it includes all the psycho-
social domains identified by previous qualitative research
and most psychosocial domains assessed by AA-specific
HRQoL measures,43–45 including the Alopecia Areata Patient
Priority Outcome (A APPO),15,16 a new 11-item PRO meas-
ure assessing hair loss severity, emotional symptoms
and activity limitations. Although each measure assesses
some domains of the AA-specific P-PRO, none serves as a
comprehensive measure of psychosocial PRO. For a fuller
assessment of the psychosocial functioning of adult patients
with AA , the SA AD -41 is warranted.
By fully assessing the broad construct of AA-related psy-
chosocial PRO, the SA AD- 41 addresses the current gap in
AA psychosocial burden assessment. Its seven underlying
subconstructs align with those found in qualitative research
and existing AA outcome measures. Its items were found
to be relevant to patients and the 1-month recall period is
appropriate for capturing adult AA patients’ psychosocial
distress.
This study was limited by demographic and AA history
generalizability. Most patients were middle-aged, married
women with higher levels of education and greater disease
severity. No data on paediatric patients were gathered.
Because psychometric validation is a multi-step, multi-study
process,19 additional research is needed. To confirm the
stability of the underlying seven-factor structure and its
generalizability, the SAAD-41 should be administered to
patients with AA with greater demographic and diversity
Table 2 Results of three iterations of the data analysis plan
Factor analysis
Internal
consistency
reliability
Items removed due to factor
loadings
Items removed due to
additional item
reduction strategies
Retained
items, nIteration
Items
entered,
n
Factors,
n
Total
variance for
which
accounted
Factor α
range
Low
factor-loading
items (< 0.4), n
Cross-loading
items
(≥ 0.32), n
α with
item
removed Bivariate rb
1122 11 80% 0.89–0.98a33 9 5 10 65
2 65 7 79% 0.79–0.98 4 5 1 11 44
3 44 7 8 1% 0.81–0.97 1 1 1 0 41
aα not applicable for Factor 11, as a one-item factor; bFor iteration 1, a higher criterion (r ≥ 0.9) for item removal consideration was use d due to very high
bivariate correlations among some items. For iterations 2 and 3, the planned r ≥ 0.8 was used.
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6Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
Table 3 Factor loadings (factors 1–7) after Principal A xis Factoring extraction with oblique rotation (Oblimin) for the 44 -item Scale of Alopecia Areata Distress for 39 2 adults with alopecia areata (AA )
residing in the USA
Item
no.
‘Due to having AA, over the past month, how much have
you been bothered by…’
1: Emotional
and cognitive
functioning
2: Romantic
relationships
3: Primary life
responsibilities
4: Non-primary
life responsibility
activities
5: Stigma 6: Family
relationshipsa
7:
Self-perception
changes
1 Emotional distress 0.73
2 Sadness 0.79
3 Anger 0.71
4 Stress due to having AA 0.77
5 Feeling anxious 0.83
6 Feeling devastated 0.73
7 Feeling irritable 0.76
8 Frustrated 0.81
9 Fear that people will judge you 0.45
10 Feeling self-conscious of your appearance 0.53
11 Feeling hopeless 0.57
12bFeeling like a part of your identity is lost or taken 0.46 0.44
13bFeeling unable to cope 0.39 0.31
14 Difficulty accepting your AA 0.45
15 Romantic partner(s) judging you 0.83
16 Feeling rejected by romantic partner(s) 0.95
17 Fear that romantic partner(s) will judge you 0.77
18 Negative effects of AA on romantic relationship(s) 0.76
19 Avoiding current romantic relationship(s) 0.69
20 Negative effects of AA on your primary responsibilities 0.72
21 Decreased performance at your primary responsibilities 0.89
22 Less enjoyment in your primary responsibilities 0.82
23 Less involvement in your primary responsibilities 0.90
24 A difficulty focusing on your primary responsibilities due to
AA-related stress
0.74
25 Physically absent from your primary responsibilities 0.82
26 Not seeking opportunities related to your primary
responsibilities
0.65
27 Negative effects of AA on your physical exercise/activities 0.77
28 Worry during physical exercise/activities that your AA will show 0.89
29 Negative effects of AA on your leisure activities 0.73
30 Worry during leisure activities that your AA will show 0.82
31 Worry during social activities that your wig/head covering use
will show
0.55
32 People judging you 0.49
33 People staring or looking at you in a weird way 0.68
34 Comments made by others about your appearance 0.64
35 People not making eye contact with you 0.56
36bLooking like a cancer patient 0.45
37 Family members judging you 0.71
38 Feeling rejected by family members 0.64
39 Fear that family members will judge you 0.88
40 Negative effects of AA on relationships with family members 0.71
41 Hiding your AA from your family members 0.62
42 Feeling ugly because of eyebrow, eyelash, and/or other facial
hair loss
0.72
43 Not recognizing yourself due to eyebrow, eyelash or beard loss 0.69
44 Feeling less feminine or masculine 0.31 0.42
aAbsolute value; bItem not included in the S AA D-41.
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Initial psychometric validation of the SA AD, K. Gorbatenko- Roth et al.
of AA severity. Qualitatively debriefing participants as to
the scale’s AA P-PRO comprehensiveness would further
assess content validity. Assessing the relationship between
SAAD-41 scores and existing established measures of psy-
chosocial functioning (e.g. DLQI)31 would help establish cri-
terion validity. To strengthen the factor of self-perception
change, potential revision of related items and further test-
ing through patient administration are needed. Regarding
construct validity, clinical utility of the SAAD-41 should be
explored. For example, does the comprehensiveness of the
SAAD-41 help dermatologists better identify patients with
more psychosocial distress? Does it assist dermatologists
in behavioural-health referral decision-making? Is the SAAD-
41 responsive to treatment change, and todermatological
and/or behavioural health?
In conclusion, collectively, these findings provide initial
psychometric validation of the SA AD- 41 as a comprehen-
sive measure of AA psychosocial PROs for adults residing
in the USA. Future research is needed to further establish
its psychometric validity.
Acknowledgments
We thank Pfizer, Inc. for Global Medical Grant funding, the
National Alopecia Areata Foundation for recruitment assis-
tance, Dr Kathy Wyrwich for informal patient-reported out-
comes and psychometricconsulting, and all subject matter
experts and patients with alopecia areata who graciously
participated in the study.
Funding sources
Research and publication werefunded by Pfizer, Inc. (Global
Medical Grant 58274089). The funder was not involved in
any research or publication efforts.
Conflicts of interest
K.G.-R.: National Alopecia Areata Foundation (NA AF);
Pfizer, Inc.; Procter & Gamble Co. S.W.: Pfizer, Inc. M.H.:
Arcutis Biotherapeutics; ASLAN Pharmaceuticals; Bioniz
Therapeutics; Cassiopea, Inc.; Concert Pharmaceuticals; Eli
Lilly and Company; NAAF; Pfizer, Inc; Procter & Gamble Co.;
Pulse Biosciences; Rho Inc.; UpToDate, Inc. The authors
declare the research was conducted without any commer-
cial or financial relationship that could potentially be consid-
ered a conflict of interest.
Data availability
The data underlying this article are available in the article and
in its online Supplementary Material.
Ethics statement
University of Minnesota Institutional Review Board approval
was received.
Copyright statement
The Scale of Alopecia Areata Distress (SAAD) tool was
created in collaboration by the University of Minnesota and
the University of Wisconsin-Stout. © 2022 Copyrighted. All
rights reserved.
Supporting Information
Additional Supporting Information may be found in the
online version of this article at the publisher’s website.
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