An update on cross-cultural adaptation of US English SMILEY

Introduction

Pediatric systemic lupus erythematosus (SLE) in children is a chronic multisystem disease that affects the health-related quality of life (HRQOL) of children from all cultures. HRQOL has been designated as a fundamental constituent of a core set of outcome measures for the assessment of treatment response in children with SLE. ¹ In order to determine the effect of SLE on the well-being of children, adolescents and their parents and assess the response to treatment modalities, it is critical to have an HRQOL tool that is applicable for different cultures.

We have previously reported the development and validation of the Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY) in US English ² HRQOL measure for children. In a previous manuscript we reported the translation and cultural adaptation process undertaken by our team of SMILEY in the following 13 language variants: Danish, Dutch, French (France), German (Germany), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico) and Turkish. ³ We conducted a rigorous process of forward and back translations, revisions and reviews so that it is culturally suitable for the children from a particular country. In the following report we will describe the translation and adaptation of SMILEY into 16 additional language variants listed here: Afrikaans, Xhosa, Arabic (Saudi Arabia), Arabic (Egypt), Chinese, Czech, English (UK), German (Austria), German (Switzerland), Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Spanish for Venezuela. Cross-cultural validation comprises translation, cultural adjustment and subsequent validation for each culture.^4,5

Materials and methods

For each language for a specific group of people (country), the first two steps of cross-cultural adaptation (translation and cultural adjustment) were conducted according to the protocol reported in our previous report. ³ The steps comprised forming collaborative relationships with the physician caring for children with rheumatic diseases, translation of SMILEY, and cultural adaptation of the translated SMILEY. One or/two forward translations were performed by two translators from US English to the local language, and they produced the initial combined forward version. That forward translation was subsequently back-translated by one or two translators into US English. Revisions were conducted throughout the process to resolve any inconsistencies. Finally the pediatric rheumatologists from that site examined the forward and back translations and made remarks and suggestions, which were integrated. The forward translation was finalized after the approval of the translators and pediatric rheumatologist(s) (Table 1).

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Table 1

Translation and adaptation for cultural suitability of US English SMILEY

	Language into which SMILEY was translated	Number of forward translations	Number of back translations	Number of reviewers for accuracy for cultural suitability
1.	Afrikaans	1 prof trans a (local) a	1 prof trans a (local) a	2 (1 prof trans, 1 ped rheum)
2.	Xhosa	1 prof trans a	1 prof trans a	3 (1 prof trans, 1 nonmedical c , 1 pediatrician)
3.	Arabic for Saudi Arabia	1 dentist	1 nonmedical (pharmacist)	2 (1 prof trans, 1 ped rheum)
4.	Chinese	2 (1 ped rheum, 1 master of medicine)	2 (1 immunologist, 1 master of medicine)	3 (1 prof trans, 1 ped rheum, 1 nonmedical)
5.	Czech	2 prof trans	2 prof trans	2 (1 prof trans, 1 ped rheum)
6.	Greek	2 (1 nonmedical, 1 ped endo)	1 prof trans	3 (2 ped rheum, 1 prof trans)
7.	Hindi	2 (1 pediatrician, 1 physician b )	1 (combined with 2 nonmedical)	3 (1 prof trans, 1 ped rheum, 1 pediatrician)
8.	Hungarian	1 ped rheum	1 prof trans	2 (1 prof trans, 1 ped rheum)
9.	Japanese	2 ped rheum	1 prof trans	3 (1 prof trans, 2 ped rheum)
10.	Romanian	1 ped resident	1 dentist	3(1 prof trans, 1 ped rheume, 1 ped resident)
11.	Serbian	3 nonmedical	2 prof trans	6 (1 prof trans, 3 nonmedical, 1 ped rheum, 1 adult rheum)
12.	English (UK)	Adapted by 1 ped renal		2 (1 prof trans, 1 ped renal)
13.	Arabic (Egypt)	Adaptation by 3 ped rheum		2 (1 prof trans, 1 ped rheum)
14.	German (Austria)	Adapted by 1 prof trans		3 (1 prof trans, 2 ped rheum)
15.	German (Switzerland)	Adapted by 1 prof trans		3 (1 prof trans, 2 ped rheum)
16.	Spanish for Venezuela	d Adapted from US Spanish by 1 ped rheum; back translation by 1 prof trans		3 (1 prof trans; 2 ped rheum)

Translations were performed by professional translators, bilingual speakers of the local language and/or pediatric rheumatologists from that country. In order to ensure that all our translations are accurate and appropriate, we obtained reviews and the final approval by our professional translation company for all the 16 language variants. We used the same professional translation company as we did in the previous study. ³ In order to make sure that the translated SMILEY corresponded to the US English SMILEY and was culturally sound, whenever possible we got additional translations and/or reviews from pediatric rheumatologists and/or other native speakers and/or physicians from each country (who also are native speakers of that language). The team involved in the translation process reviewed the final adaptation to make certain that it corresponded to US English in semantic, colloquial and theoretical terms.

Results

We first set up a collaborative relationship with 20 physicians caring for children with rheumatic diseases from 16 different institutions.

Following the process described above, the translations/adaptations of SMILEY into 16 language variants were performed (Table 1). The forward and back translations for Afrikaans, Xhosa and Czech were conducted by professional translators. Two native speakers (one nonmedical and one pediatrician) reviewed the Xhosa version. The pediatric rheumatologist arranged a meeting between the two native speakers, and the team finalized the version.

Arabic, Romanian and Hindi translations were reviewed by a pediatric rheumatologist and professional translator. Chinese and Greek translations were arranged by our collaborators in their countries. Hungarian and Japanese versions were created by pediatric rheumatologists and professional translators. For the creation of the Serbian version, the pediatric rheumatologist arranged two meetings with the translators for developing the final unified Serbian version. This pediatric rheumatologist was involved in the adaptation of the Serbian version of the Childhood Health Assessment Questionnaire and the Childhood Health Questionnaire. ⁷

English for the UK was adapted by our collaborator in the UK from the US English SMILEY, and the adaptation was reviewed by their institutional review board in the UK as well as our professional translation company. The German versions for Austria and Switzerland were adapted from the German SMILEY for Germany. Arabic (Egypt) was adapted from Arabic (Saudi Arabia) as arranged by our collaborator in Egypt.

All the reviews were conducted by a pediatric physician and the professional translation company to ascertain that the translations were culturally suitable for children and parents from their country. The number of forward and back translations and reviews obtained for each of the translations are listed in Table 1.

Discussion

In this report, we have described the cross-cultural adaptation of US English SMILEY into 16 language variants. We have meticulously performed these translations and adaptations following the methodology reported in our previous paper. ² The next step is to determine the validity of these versions. An international multicenter study is ongoing in order to determine the validity of the SMILEY translations in some countries. As part of that study, subjects are being probed about the relevance and comprehensibility of SMILEY. We applied rigorous methodology as in our previous paper to complete the translations/adaptations. We tried to get either pediatric rheumatologists/other physicians or nonmedical native speakers to perform the forward and back translations since the translation/adaptation must be appropriate for the patient and the parent from that country. In other cases we used a professional translation service for forward and back translation. In order to hold our process to the highest standard, we had a physician and our translation company review all of the translations, make changes as necessary and approve the version.

There are few pediatric rheumatologists in the world, and in several European, Asian and African countries, pediatric rheumatology is not yet recognized as an official field. Pediatricians and nephrologists also take care of children with rheumatic diseases.

Currently there are 29 translations of SMILEY available in the following language variants: Afrikaans, Xhosa, Arabic (Saudi Arabia), Arabic (Egypt), Chinese, Czech, English (UK), German (Austria), German (Switzerland), Greek, Hindi, Hungarian, Japanese and Romanian are reported here; and Danish, Dutch, French (France), German (Germany), Hebrew, Italian, Portuguese (Brazil), Serbian, Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela) and Turkish have been reported in an earlier publication. ³

Although individualized aggressive therapeutic regimens have improved survival in children with SLE, it is often at the expense of increased morbidity and impaired HRQOL. SLE still remains a potentially life-threatening illness and is associated with devastating complications including disease flare, severe disability and organ damage. These different versions of SMILEY will enable us to clearly elucidate ethnic and geographic differences in the impact of SLE across the world. Since SMILEY was developed from patients’ responses, we think it will be the most specific and sensitive assessment measure for children with SLE. SMILEY will enable us to interpret patients’ feelings and identify problems that need to be targeted by health professionals in the different languages spoken by children.