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Headache Medicine, v.10, n.3, p.73-75, 2019
ABSTRACT
RESUMO
Descritores: Estigma; Perda produtiva; enxaqueca.
ORIGINAL ARTICLE
Translation, back-translation and cultural adaptation of
the 8-item Stigma Scale for Chronic Illness to Portuguese
Tradução, retrotradução e adaptação cultural da Escala de
Estigma para Doença Crônica (8 itens) ao Português
Rosana Tieka Miyazaki Brancucci
1
Marcio Lima Pontes Natan
2
Aline Vitali da Silva
3
Arao Belitardo de Oliveira
4
Juliane Prieto Peres Mercante
5
1
Instituto de Psiquiatria - HCFMUSP
2
Departamento de Neurologia - HCFMUSP
3
Universidade Norte do Paraná
4
International Headache Society - Social
Media Committee
5
Sociedade Brasileira de Cefaleia - Comitê de
Psicologia
*Correspondence
Juliane Mercante
E-mail: julianeppm@gmail.com
Received: September 4, 2019.
Accepted: September 20, 2019.
Cultural diversity limits cross cultural understanding of diseases. Stigma has been
studied in neurological disorders, chronic pain and migraine, but instruments
are not available in Portuguese. We aimed to translate the 8-item Stigma Scale
for Chronic Illness to Portuguese. Methods: We followed the 5 steps advised
by guidelines for transcultural validation. Results: Translation, backtranslation
and cultural validation has been performed following the 5 steps, and a nal
version of the instrument was achieved. Discussion/Conclusion : Stigma is an
important issue in migraine management. Measurement of stigma in headache
sufferers in Brazil may be started. The nal version of the instrument is provided.
Keywords: Stigma; Work productivity; Migraine.
A diversidade cultural é cada vez mais comum no mundo e limita a compreensão
transcultural de doenças. O estigma foi estudado em distúrbios neurológicos,
dor crônica e enxaqueca, mas os instrumentos não estão disponíveis em
português. Nosso objetivo foi traduzir a escala de estigma de oito itens para
doenças crônicas para o português. Métodos: Foram seguidas as 5 etapas
recomendadas pelas diretrizes para validação transcultural. Resultados: A
tradução, a retrotradução e a validação cultural foram realizadas seguindo
as 5 etapas, e uma versão nal do instrumento foi alcançada. Discussão/
Conclusão: O estigma é uma questão importante no tratamento da enxaqueca.
A mensuração do estigma em pessoas com dor de cabeça no Brasil pode ser
iniciada. A versão nal do instrumento é fornecida.
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Brancucci RTM, et al.
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INTRODUCTION
Cultural diversity has been growing worldwide
due to globalization and migration. Countries in Europe
and others such as the United States have populations
with signicant diverse cultural, language and
ethnicity
1
. Developed instruments, scales for diseases
measurements, have been conceived in English, leaving
cross cultural studies limited because of the lack of
translation and cultural validation
2
.
Stigma has been rst mentioned in 1963 in medical
literature
3
, becoming an increasingly studied topic in
medical research. Stigma is a social science construct
meaning a aw that discredits individuals for being
socially unacceptable eliciting prejudice, discrimination,
and loss of status. When someone experience stigma, a
negative attitude toward treatment appears, affecting
treatment adherence.
Stigma has been studied in several neurological
disorders, including multiple sclerosis, stroke, epilepsy,
spinal cord injury, and Parkinson’s disease, showing
greater distress and decreased quality of life
4,5
. Pain
conditions have also been determined to be affected
by stigma, but headache disorders, although very
inuenced, have never been studied. The Stigma Scale
for Chronic Illness has been used to evaluate the issue
in chronic conditions
6
and a short version, 8-item scale
developed
7
.
Headache disorders are prevalent and a major
debilitating condition in Brazil
8
. We aimed to start the
validation process of the SCCI by translating, back-
translating, and performing the cultural adaptation for
Portuguese and Brazilian culture.
METHODS
Translation and cultural adaptation of the
SSCI
We choose the symmetrical category warranting
faithfulness of meaning and colloquialness in both the
source language (OS; original language of the instrument)
and the target language (BPS; Brazilian Portuguese).
The purpose of translation was to achieve equivalence
between both instruments.
The scale consisted in a 8-item instrument, each
item can be scored from 1 to 5, being 1 = never, 2 = rarely,
3 = sometimes, 4 = often, and 5 = always. The higher the
score the higher frequency of experiencing stigma.
Guidelines for transcultural validation advise that
the full project be divided into steps, so a more careful
process occur
2
. The rst 5 steps were:
Step 1: translation of the scale into the target
language (Portuguese)
Step 2: comparison of the two translated versions of
the instrument (TL1 and TL2): synthesis I
Step 3: blind back-translation of the preliminary
initial translated version of the instrument
Step 4: comparison of the two back-translated
versions of the instrument (B-TL1 and B-TL2): synthesis II
Step 5: pilot testing of the pre-nal version of the
instrument in the target language with a monolingual
sample: cognitive debrieng
RESULTS
We followed the 5 steps suggested by Sousa et al.
2
.
Step 1
The original SSCI with 8 items (OS) was translated
into Brazilian Portuguese Scale (BPS) producing
two versions (BPS-1 and BPS-2) by two bilingual
and bicultural translators whose mother language is
Brazilian Portuguese, both knowledgeable about health
terminology and one (JPM) in psychology.
Step 2
A third independent translator, uent in both
languages, who lived in the United States and Brazil,
compared BPS-1 and BPS-2, resolved ambiguities
resolved ambiguities and discrepancies and produced
the BPS-TL.
Step 3
BPS-TL was then back-translated by two
neurologists, well-versed in both languages, to OS (OS-1
and OS-2) making two versions.
Step 4
OS-1 and OS-2 were then compared, also between
the original scale. Wording, sentence structure, relevance
and meaning were ascertained. A multidisciplinary
committee, one neurologist, one psychologist, one
physical educator. Discrepancies and ambiguities were
resolved, resulting in a nal and similar version. retaining
the original meaning. Additional translation and back-
translation were not necessary.
Step 5
The nal BPS-TL was test piloted among an expert
panel of 10 people, PhD students, and scholars, so
clarity of the instructions, items and format were further
examined, without additional changes.
The nal result of the Brazilian Version of SSCI is
shown in Table 1.
DISCUSSION
The SSCI is an English-language Neuro-QOL
instrument developed by Rao et al.
4
to measure stigma
experienced by individuals with chronic neurological
disorders, including stroke.
Its rst version included 24 items with two subscales:
felt (13 items) and enacted (11 items) stigma. The felt
stigma questions were about embarrassment, worry
and self-blame. Enacted stigma, asked about behavior
of others, such as avoiding contact, staring, and being
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Back-translation and cultural adaptation of the 8-item
Brancucci RTM, et al.
75
Headache Medicine, v.10, n.3, p.73-75, 2019
unkind
9
. A short version with 8 items has shown to be as
reliable and valid, therefore we used this one
7
.
Stigma has been studied in chronic pain patients
10
,
however, only four patients had a head pain diagnosis.
Stigma has been identied as an important issue in
migraine management
11
. Young et al.
11
studied 123
episodic, 123 chronic migraine patients, comparing with
62 epilepsy patients. Subjects with migraine reported
greater inability to work than epilepsy subjects. Stigma
correlated most strongly with inability to work, and was
greater for chronic migraine than epilepsy or episodic
migraine.
CONCLUSION
Measurement of stigma in headache sufferers in
Brazil is important, with a translated instrument further
studies are possible. The nal version of the instrument
is provided.
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Nunca Raramente Às Vezes
Na Maior Parte
Do Tempo
Sempre
Por causa da minha doença,
algumas pessoas pareceram
desconfortáveis comigo.
○ ○ ○ ○ ○
Por causa da minha doença,
algumas pessoas me evitaram.
○ ○ ○ ○ ○
Por causa da minha doença, me
senti deixado de fora das coisas.
○ ○ ○ ○ ○
Por causa da minha doença, as
pessoas foram duras comigo.
○ ○ ○ ○ ○
Por causa da minha doença, as
pessoas evitavam me olhar.
○ ○ ○ ○ ○
Eu me senti envergonhado com
a minha doença.
○ ○ ○ ○ ○
Eu me senti envergonhado por
causa das minhas limitações
físicas.
○ ○ ○ ○ ○
Algumas pessoas agiram como
se fosse minha culpa eu ter essa
doença.
○ ○ ○ ○ ○
Table 1. Final Version of the 8-item Stigma Scale for Chronic Illness to Portuguese. Responda a cada pergunta do
enunciado marcando uma alternativa por linha.
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