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Translation of the Broad Autism Phenotype Questionnaire to an Indian language: A description of the process
Asian Journal of Psychiatry 15 (2015) 62–67
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Translation of the Broad Autism Phenotype Questionnaire to an Indian language: A description of the process Shoba Sreenath Meera a,*, Satish Chandra Girimaji b, Shekar P. Seshadri b, Mariamma Philip c, N. Shivashankar a, Parlier Morgan d, Joseph Piven d a
Department of Speech Pathology and Audiology, NIMHANS, Bangalore, India Department of Child and Adolescent Psychiatry, NIMHANS, Bangalore, India Department of Biostatistics, NIMHANS, Bangalore, India d Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, School of Medicine, United States b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 20 January 2015 Received in revised form 14 March 2015 Accepted 26 April 2015
The Broad Autism Phenotype Questionnaire (BAPQ) which is a reliable, efficient and easy to administer instrument is used to assess the Broad Autism Phenotype (BAP). In order to understand cross cultural perspectives using this instrument, a key process is translation of the instrument. The process of translation is often overlooked and hence the quality of the translated instrument may suffer. This paper highlights the robust process adopted for translating the BAPQ into one of the Indian languages – Kannada, using the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and World Health Organisation (WHO) guidelines. The translated instrument was tested on a pilot sample of parents of 10 children with ASD and parents of 11 typically developing children. The results are in congruence with the published literature. ß 2015 Elsevier B.V. All rights reserved.
Keywords: Broad Autism Phenotype Broad Autism Phenotype Questionnaire Translation ISPOR guidelines WHO guidelines
1. Introduction Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social communication and interaction, and restricted repetitive patterns of behaviour. It is now well known that ASD has a strong genetic component and that relatives of ASD are at a higher risk for the disorder. Twin and family studies conducted by many research groups have indicated hereditary factors in ASD (Bailey et al., 1995; Bolton et al., 1994; Folstein and Rutter, 1977; Piven et al., 1997a). The core features of ASD that are also present in other family members of individuals with ASD, albeit in much milder forms, but not meeting diagnostic criteria for ASD, is called the ‘‘Broad Autism Phenotype’’ (BAP). It has been reported that 20–50% of family members of individuals with ASD exhibit at least one BAP feature (Bolton et al., 1994; Dawson et al., 2007). Assessment of BAP traits is a challenge and various research groups have employed different assessment methods such as direct measures, measuring the BAP domains separately e.g.
* Corresponding author at: Department of Speech Pathology and Audiology, NIMHANS, Hosur Road, Bangalore 560029, India. Tel.: +91 98865 89656. E-mail address: [email protected] (S.S. Meera). http://dx.doi.org/10.1016/j.ajp.2015.04.013 1876-2018/ß 2015 Elsevier B.V. All rights reserved.
Pragmatic Rating Scale (PRS) (Landa et al., 1992) and the Modified Pragmatic rating Scale (MPRS; Ruser et al., 2007) or interviewbased family history data, e.g., Family history Interview (Bolton et al., 1994) and Family History Schedule, (Piven et al., 1997b). Some of the newer instruments to assess the BAP include, the Broader Phenotype Autism Symptoms Scale: BPASS (Dawson et al., 2007) Social Responsiveness Scale: SRS (Constantino and Todd, 2005), Autism Spectrum Quotient: ASQ (Baron-Cohen et al., 2001) and the Broad Autism Phenotype Questionnaire: BAPQ (Hurley et al., 2007) The BAPQ has been reported to be an efficient, reliable, easy to administer questionnaire with a good replicable proposed factor structure in comparison with the other tools like the ASQ and SRS, within the general population (Ingersoll et al., 2011). The BAPQ has been specifically designed as a self and informant measure of the BAP, unlike many other questionnaires which were originally developed to identify individuals with ASD and later on used to evaluate the BAP also. For efficient implementation of this instrument across different linguistic cultures, it has to be translated to a language specific to the test population/region. The BAPQ has now been adapted from English to six other languages viz., Chinese, Japanese, Croatian, Portuguese, Turkish and Hebrew. For the first time the BAPQ has been translated to an Indian language – Kannada, a language that is spoken in the state of
S.S. Meera et al. / Asian Journal of Psychiatry 15 (2015) 62–67
Karnataka, Southern India, one of the several principal languages spoken in the country. The purpose of reporting the development of the Kannada version of the BAPQ is to document the process adopted for the translation process. Additionally and more importantly, a description of the process may perhaps become a basis for translation of the tool into many other languages in India for research and clinical applications. Thus, the aim of the current study was to develop a Kannada version of the BAPQ and pilot test it on parents of children with ASD. 2. Materials and method 2.1. Description of the BAPQ The BAPQ assesses an individual’s personality traits and language characteristics in three domains namely; aloof personality, pragmatic language and rigid personality. The three domains are parallel to the three cardinal areas of impairment in autism. Moreover, these areas are considered as key features of the BAP in parents of individuals with autism (Losh et al., 2008; Piven et al., 1997a,b). The aloof personality domain is characterized by a lack of interest in social interaction; the pragmatic language domain is described as difficulties in maintaining a conversational use of language; rigid personality domain is characterized by difficulty in adapting to change and need to follow routines. It consists of 36 statements, where each statement is rated on a 6-point Likert scale (1 = very rarely, 6 = very often). Scores in the three subscales (Aloof, Pragmatic Language, and Rigid) are analyzed separately as domain scores. Each statement is rated by both the individual (selfscores) and the spouse (informant scores). An average of the two is taken to arrive at the best estimate score. Finally a total score is arrived at by summing the score an individual gets on all the three domains as a Total Self (TS) score, Total Informant (TI) score and Total Best estimate score (TB). Higher scores are indicative of possible presence of the BAP feature. The BAPQ has cut off scores originally proposed in 2007 (Hurley et al., 2007) and later revised in 2013 (Sasson et al., 2013). These scores allow an individual to be placed categorically as BAP+ and BAP-, which correlates well with the M-PAS-R/PRS (Hurley et al., 2007). 2.2. Translation of the BAPQ instrument The translation guidelines of the International Society for Pharmacoeconomics and Outcomes Research: ISPOR (Wild et al., 2005) and the World Health Organisation (WHO) were used for the translation work. Though the ISPOR guidelines essentially highlight principles of good practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) measures, this was adopted for the translation process since it has rigorous and detailed guidelines. While the WHO provides a framework with four steps viz., Forward translation, Expert panel back-translation, Pre-testing and cognitive interviewing and Final version, the ISPOR guidelines define many more steps viz., Preparation, Forward Translation, Reconciliation, Back Translation, Back Translation Review, Harmonization, Cognitive Debriefing, Review of Cognitive Debriefing Results and Finalization, Proofreading and Final Report. Though the ISPOR has more steps, the WHO describes the crucial steps (e.g. back translation) in greater detail. Therefore, the guidelines from ISPOR and WHO were adopted and the steps, from both, which were appropriate for the current study were employed and have been described in the Table 1. To maintain conceptual equivalence of a word/phrase/sentence and not a word-for-word translation between English and Kannada, a back-translation was conducted. First, the BAPQ was translated into Kannada by two independent forward translators
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who were native Kannada speakers, one being an author of this paper (NS). A third independent translator and the author (NS) worked in unison to finalize a single forward translation. The back translation step was carried out by three individuals well-versed in English and Kannada. All were native speakers of Kannada and studied English as their first language and medium of instruction in school and college for over 12 years. The three versions of the back translation were compiled and reviewed by one of the authors (SSM). All the three versions were similar in the meaning they conveyed though they were worded differently. For example, to the original statement ‘‘People have to talk me into trying something new’’, the three back translated versions were; (i) ‘‘Others have to push me to try something new’’, (ii) ‘‘Others have to coax me to try out new things’’, (iii) ‘‘I need others to push me or encourage me to try anything new’’. The compiled version was sent to the authors of the English BAPQ instrument (JP & MP) for independent review and expert comments. Authors identified six of the 36 statements as not matching with the original version. For example, to the original statement ‘‘I like to closely follow a routine while working’’ the back translated version was ‘‘I stick to routine’’. The authors of the original instrument asked for a word in Kannada to be added that would give a meaning of ‘‘I stick to routine in my work/in work’’. Suggestions received from these authors were incorporated and the above mentioned process was repeated from the first step-forward translation. Cognitive debriefing [i.e. testing the instrument on a small group of relevant patients or lay people (with an informed consent) in order to test alternative wording and to check the understandability, interpretation, and cultural relevance of the translation] was carried out on 20 spousal pairs representing upper, middle and upper lower SES (10 parents of children with Autism Spectrum Disorders, 10 parents of Typically Developing children). These participants were asked to explain what they understood when they read each statement/question. For example to the original statement ‘‘I like being around other people’’, one of the participant (also called a pre-test respondant) interpreted this as ‘‘I like mixing with other people/I like to move with other people’’. The Conceptual equivalence of this is ‘‘I like being around people’’. These participants were also asked to rate the instrument on a three-point scale; easy, ambiguous and difficult to understand. All participants (100%) rated the instructions as well as the questions/statements easy to understand. Finally, two independent judges who were well versed in Kannada literature proofread the questionnaire and the final version was printed. 2.3. Administration of Kannada BAPQ Parents of 10 children with ASD (20 participants) and parents of 11 typically developing children (22 participants) were recruited for the study, after obtaining a written consent from each participant as per the guidelines of the IRB. Detailed clinical evaluation and diagnosis of ASD based on the Diagnostic and Statistical Manual of Mental Disorders (2013) criteria was made by the Child Psychiatrist (CP) who had a minimum of 25 years of clinical experience in working with children with ASD. Parents of typically developing children who volunteered to participate were recruited only if their child had no history of delayed developmental milestones or scholastic difficulties, or no serious complaints from the school regarding the child’s behaviour and had satisfactory overall performance, which was comparable to children of his/her age. Both parents had to agree to participate and possess a minimum of 10 years of education and also be capable of speaking, reading and writing in Kannada to enable them to answer the questionnaire. Parents diagnosed with developmental disorders during their childhood or having known neurological or psychiatric illnesses were excluded from the study.
S.S. Meera et al. / Asian Journal of Psychiatry 15 (2015) 62–67
64
Table 1 Describes ISPOR and WHO procedures for translational work and corresponding steps followed in the current study. Step (ISPOR)
Components/description (ISPOR)
Step (WHO)
Components/description (WHO)
In the current study
1.
Preparation (initial work carried out before the translation work begins)
Obtain permission to use instrument Develop explanation of concepts in instrument
Expert panel
The panel should include the original translator, experts in health, as well as experts with experience in instrument development and translation
2.
Forward Translation (translation of the original language, also called source version of the instrument into another language, i.e., the target language)
Development of at least two independent forward translations
Forward translation
Aim at the conceptual equivalent of a word or phrase, not a word-for-word translation
Obtained permission. It had a panel as mentioned in the WHO guidelines Explanation of various concepts in the instrument was developed in collaboration with authors of the instrument Two independent forward translations were made with provision of explanation of concepts in the instrument
Provision of explanation of concepts in the instrument to the forward translators
Simple, clear and concise in formulating a question. Target language should aim for the most common audience. Avoid use of jargon, colloquialism, idioms or vernacular terms.
3.
Reconciliation
Reconciliation of the forward translations into a single forward translation.
Nil
4.
Back Translation
Back translation of the reconciled translation into the source language.
Backtranslation
Consider issues of gender and age applicability Nil
Back translation by an independent translator, whose mother tongue is the source language and who has no knowledge of the questionnaire As in the initial translation, emphasis in the backtranslation should be on conceptual and cultural equivalence and not linguistic equivalence
5.
6.
Back Translation Review
Harmonization
Comparison of the backtranslated versions of the instrument with the original to highlight and investigate discrepancies between the original and the reconciled translation, which is then revised in the process of resolving the issues.
Nil
Comparison of back translations of multiple language versions with each other and the original instrument to highlight discrepancies between the original and its derivative translations, and to achieve a consistent approach to translation problems.
Nil
Nil
Nil
Forward translators were instructed to aim at achieving conceptual equivalence, to make questions simple, clear, concise to avoid using jargon (if any) and to keep the most common audience (people who use Kannada for their day-to-day activities and those who could read Kannada newspapers) in mind while translating the document A third independent translator and the primary translator worked in unison to finalize a single forward translation This was carried out by three individuals well-versed in the source language as well as the target language. All three were native speakers of the target language and studied English (Source language) as their first language and medium of instruction in school and college for over 12 years. Need for conceptual equivalence was stressed upon. We could not find individuals whose mother tongue was English (source language) but we made sure that the back translators were proficient in both spoken and written English. The three versions of the back translation was compiled and reviewed by the researcher and was sent to the authors of the instrument for independent review and expert comments Suggestions given by the authors of the original instrument were incorporated and step 2, 3 and 4 were repeated where the back translation version did not match the original question NA
S.S. Meera et al. / Asian Journal of Psychiatry 15 (2015) 62–67
65
Table 1 (Continued )
7.
Step (ISPOR)
Components/description (ISPOR)
Step (WHO)
Components/description (WHO)
In the current study
Cognitive debriefing
Testing the instrument on a small group of relevant patients or lay people in order to test alternative wording and to check understandability, interpretation, and cultural relevance of the translation
Pre-testing and cognitive interviewing
Pre-test the instrument on the target population Pre-test respondents (PTR) should include individuals representative of those who will be administered the questionnaire PTR should number 10 minimum for each section. They should represent males and females from all age groups and different socioeconomic groups PTR should be administered the instrument and be systematically debriefed. This debriefing should ask respondents: What they thought the question was asking? Whether they could repeat the question in their own words? What came to their mind when they heard a particular phrase or term? Any word they did not understand as well or found unacceptable or offensive It should also ask them to explain how they choose their answer The answers to these questions should be compared to the respondent’s actual responses to the instrument for consistency Finally, when alternative words or expressions exist for one item or expression, the PTR should be asked to choose which of the alternatives conforms better to their usual language This step is to be conducted by an experienced interviewer –
This step was done on 20 spousal pairs (parents of 10 children with Autism Spectrum disorders, parents of 10 Typically Developing children)
8.
Review of Cognitive Debriefing Results and Finalization
9.
Proofreading
10
Final Report
Comparison of the patients’ or lay persons’ interpretation of the translation with the original version to highlight and amend discrepancies Final review of the translation to highlight and correct any typographic, grammatical or other errors Report written at the end of the process documenting the development of each translation
–
Final version
Document as a result of all the iterations described above
Documentation
Initial forward version A summary of recommendations by the expert panel The back-translation A summary of problems found during the pre-testing of the instrument and the modifications proposed The final version
All participants went through all the debriefing steps They found the instructions and questions in the questionnaire easy to follow
No discrepancies were found
This was done by two experts who worked together and are well versed in the target language (Kannada) Report made
ISPOR, International Society for Pharmacoeconomics and Outcomes Research; WHO, World Health Organisation; Nil, step not included in the guidelines; NA, not applicable.
3. Results Preliminary t-test and x2 analyses were employed to check for comparability between the ASD and TD groups. Index children in both the ASD and TD groups were comparable on age. However, there were more males in the ASD group (attributed to ASD being more prevalent in males). Parent characteristics were comparable
on age, socio-economic status (SES), education and number of years of being married to each other as given in Table 2. 3.1. Group differences in BAPQ scores between ASD and TD parents A Mann–Whitney test was conducted to evaluate the group differences in the BAPQ Total Best estimate score and for the best
S.S. Meera et al. / Asian Journal of Psychiatry 15 (2015) 62–67
66 Table 2 Group characteristics of the two study groups.
Index child’s age (months) Parent age (years) Index child’s gender
ASD
TD
p Value
(mean SD)
87.30 52.82
86.73 65.27
0.975y
(mean SD) Males
40.35 6.71 18 (90.0%)
37.59 7.87 10 (45.5%)
0.231y 0.008^
Females SES Education Years married y ^
2 (10.0%)
12 (54.5%) 1.000y 0.251y 0.903y
Not significant. <0.01.
estimate scores of the three subscales namely, Aloofness, Pragmatic Language and Rigidity. Best estimate scores have been reported here on the belief that they reflect a fair rating of an individual (Table 3). Due to limited sample size further analysis on each subscale in terms of self and informant scores was not attempted. 4. Discussion The emergence of BAPQ as a widely used and sensitive research instrument has lent itself to be translated in to six different languages. The BAPQ in Kannada has become the seventh language version and the first Indian language. The ISPOR and WHO guidelines, which are robust and systematic, have been adopted by this study as a standard protocol for the translation work. The guidelines indicate the need for a back translation procedure which is an accepted standard for validating the ‘fidelity’ of the translated instrument in comparison to the original. After completion of the due process, BAPQ-Kannada was administered on a pilot group. Results from the pilot study revealed that scores on the Total Best estimate (TB), Aloofness Best estimate (AB) and Pragmatic Language Best estimate (PLB) were significantly different between the ASD and TD group. This result is in line with previously reported literature (Hurley et al., 2007; Sasson et al., 2013). This indicates that the Kannada translation also provides similar results as reported previously for the above mentioned subscales. However, in the current study there were no statistically significant differences on the Rigidity Best estimate (RB) score between the ASD and TD groups. Lack of this significance could be attributed to insufficient power of the study as well as possible cultural differences/variability in responding to the questionnaire which warrants further research. Another important contributor to this difference could be the concept of rigidity itself which is hard to fit into a dimensional scale. Further analysis on each subscale in terms of self and informant scores also becomes important which was not attempted in the present study due to
Table 3 Comparison of best estimate scores of the BAPQ between the two groups. Variable
AB PLB RB TB
Min–Max (median)
p Value
ASD (n = 20)
TD (n = 22)
1.63–4.21 1.67–3.38 2.00–4.67 1.83–3.63
1.42–3.54 1.67–2.92 1.88–4.13 1.65–3.04
(2.75) (2.42) (3.31) (3.00)
(2.46) (2.02) (3.27) (2.64)
0.043* 0.009^ 0.900y 0.013*
AB, Aloof Best estimate; PLB, Pragmatic Language Best estimate; RB, Rigid Best estimate; TB, Total Best estimate. y Not significant. * <0.05. ^ <0.01.
limited sample size. Sasson et al. (2014) have reported that selfscores may under-report the magnitude of the problem especially by fathers who are positive for BAP and thus informant scores will prove useful. Since the best estimate scores are an average of self and informant scores, it is important to view these scores with caution. While the ISPOR includes all steps of the WHO guidelines, the latter was also used since steps such as forward translation, backtranslation, pre-testing and cognitive interviewing have been described in greater detail. Some differences, strengths and limitations in the two guidelines are as follows. The WHO guidelines give importance to an expert panel who will be involved in the translation, to guide and monitor the process. In the ISPOR guidelines, the number of translators (two) required for the forward translation has been specified whereas no such details are given in the WHO. Therefore the extra step – Reconciliation (see Table 1) is provided for in the ISPOR and not in the WHO guidelines. The WHO guidelines has explicitly stated the need for conceptual equivalence in both forward translation and back translation – a very important concept particularly because translation from English to Kannada and back to English cannot be solely achieved by word to word translation. This is a challenge whenever an investigator attempts to translate the original tool to the required language. To state an example for conceptual equivalence in the present study, to the original statement ‘‘I lose track of my original point when talking to people’’, the back translated version was, ‘‘Most often during a conversation I do not touch upon the main point of a discussion’’. This did not match the original version in meaning. Another round of forward and back translation was carried out after which the conceptual equivalence came through. The new version was ‘‘While talking/conversing, I veer away from the main/original topic or while talking/conversing, I fail to concentrate on the main topic/lose track of the main topic’’. Furthermore, the original English version also had to be modified (with permission) based on conceptual equivalence, to suit the social framework of the English speaking Indian population. For example, to the original statement ‘‘People have to talk me into trying something new’’ the modified version (indicated in parenthesis in the tool after the original statement/question) was ‘‘People have to coax/convince me to try new things). The ISPOR on the other hand has given importance to the back translation review step, wherein, the backtranslated versions of the instrument are compared with the original in order to highlight and investigate the discrepancies between the original and the reconciled translation. In this study, the back translated versions were compiled and sent to the authors of the original instrument for expert review and comments. This step, as mentioned earlier, is an accepted standard for validating the fidelity of the translated instrument. In the WHO guidelines, the cognitive debriefing step is presented in great detail and is clearly defined, in comparison to the ISPOR guidelines. This step is also crucial because the tool/instrument is tested on the target group and checked for ease of understanding, acceptability of terms etc. The participants on the current translated version found no difficulties/or had no complaints about the questionnaire in terms of sentence comprehension and reported no ambiguity. The rigorous guidelines were strictly adhered to and the quality of the translated instrument is reflected in the 100% positive report provided by the participants. The authors recommend a combination of the ISPOR and WHO guidelines as adopted in the current study be followed for translating different tools, to achieve high standards. Since India is a multi-lingual and multi-cultural population, the instrument has a vast scope to be translated into many other languages and lead to evaluation on a larger population to understand cross cultural variations.
S.S. Meera et al. / Asian Journal of Psychiatry 15 (2015) 62–67
Role of funding source This research has not received any outside or institutional funding. No financial interests, direct or indirect, exist for the individual contributors in connection with the content of this paper. No sources of outside support were present for this work. Author contributions We certify that we have participated sufficiently in the intellectual content, conception and design of this work or the analysis and interpretation of the data (when applicable), as well as the writing of the manuscript, to take public responsibility for it and have agreed to have our name listed as a contributor. This work is not being considered for publication in another journal. We give the rights to the corresponding author to make necessary changes as per the request of the journal, do the rest of the correspondence on our behalf and she will act as the guarantor for the manuscript on our behalf. Conflict of interest None declared. Acknowledgement We would like to thank Dr. Girish N. Rao, Department of Epidemiology, NIMHANS for his guidance with the translation work. References American Psychiatric Association, 2013. Diagnostic and Statistical Manual of Mental Disorders. American Psychiatric Association, Washington, DC. Bailey, A., Le Couteur, A., Gottesman, I., Bolton, P., Simonoff, E., Yuzda, E., Rutter, M., 1995. Autism as a strongly genetic disorder: evidence from a British twin study. Psychol. Med. 25 (1), 63–77. Baron-Cohen, S., Wheelwright, S., Hill, J., Raste, Y., Plumb, I., 2001. The Reading the Mind in the Eyes Test revised version: a study with normal adults, and adults
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with Asperger syndrome or high-functioning autism. J. Child. Psychol. Psychiatry 42 (2), 241–251. Bolton, P., Macdonald, H., Pickles, A., Rios, P., Goode, S., Crowson, M., Bailey, A., Rutter, M., 1994. A case–control family history study of autism. J. Child. Psychol. Psychiatry 35 (5), 877–900. Constantino, J.N., Todd, R.D., 2005. Intergenerational transmission of subthreshold autistic traits in the general population. Biol. Psychiatry 57 (6), 655–660. Dawson, G., Estes, A., Munson, J., Schellenberg, G., Bernier, R., Abbott, R., 2007. Quantitative assessment of autism symptom-related traits in probands and parents: broader phenotype autism symptom scale. J. Autism Dev. Disord. 37 (3), 523–536. Folstein, S., Rutter, M., 1977. Infantile autism: a genetic study of 21 twin pairs. J. Child. Psychol. Psychiatry 18 (4), 297–321. Hurley, R.S., Losh, M., Parlier, M., Reznick, J.S., Piven, J., 2007. The broad autism phenotype questionnaire. J. Autism Dev. Disord. 37 (9), 1679–1690. Ingersoll, B., Hopwood, C.J., Wainer, A., Brent Donnellan, M., 2011. A comparison of three self-report measures of the broader autism phenotype in a non-clinical sample. J. Autism Dev. Disord. 41 (12), 1646–1657. Landa, R., Piven, J., Wzorek, M.M., Gayle, J.O., Chase, G.A., Folstein, S.E., 1992. Social language use in parents of autistic individuals. Psychol. Med. 22 (1), 245–254. Losh, M., Childress, D., Lam, K., Piven, J., 2008. Defining key features of the broad autism phenotype: a comparison across parents of multiple- and single-incidence autism families. Am. J. Med. Genet. B. Neuropsychiatr. Genet. 147B (4), 424–433. Piven, J., Palmer, P., Jacobi, D., Childress, D., Arndt, S., 1997a. Broader autism phenotype: evidence from a family history study of multiple-incidence autism families. Am. J. Psychiatry 154 (2), 185–190. Piven, J., Palmer, P., Landa, R., Santangelo, S., Jacobi, D., Childress, D., 1997b. Personality and language characteristics in parents from multiple-incidence autism families. Am. J. Med. Genet. 74 (4), 398–411. Process of translation and adaptation of instruments. Available from: http://www. who.int/substance_abuse/research_tools/translation/en/ (retrieved 13.01.15). Ruser, T.F., Arin, D., Dowd, M., Putnam, S., Winklosky, B., Rosen-Sheidley, B., Piven, J., Tomblin, B., Tager-Flusberg, H., Folstein, S., 2007. Communicative competence in parents of children with autism and parents of children with specific language impairment. J. Autism Dev. Disord. 37 (7), 1323–1336. Sasson, N.J., Lam, K.S., Childress, D., Parlier, M., Daniels, J.L., Piven, J., 2013. The broad autism phenotype questionnaire: prevalence and diagnostic classification. Autism Res. 6 (2), 134–143. Sasson, N.J., Faso, D.J., Parlier, M., Daniels, J.L., Piven, J., 2014. When father doesn’t know best: selective disagreement between self-report and informant report of the broad autism phenotype in parents of a child with autism. Autism Res. 7 (6), 731–739. Wild, D., Grove, A., Martin, M., Eremenco, S., Mcelroy, S., Verjee-Lorenz, A., Erikson, P., Translation, I.T.F.F., Cultural, A., 2005. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health 8 (2), 94–104.
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Asian Journal of Psychiatry journal homepage: www.elsevier.com/locate/ajp
Translation of the Broad Autism Phenotype Questionnaire to an Indian language: A description of the process Shoba Sreenath Meera a,*, Satish Chandra Girimaji b, Shekar P. Seshadri b, Mariamma Philip c, N. Shivashankar a, Parlier Morgan d, Joseph Piven d a
Department of Speech Pathology and Audiology, NIMHANS, Bangalore, India Department of Child and Adolescent Psychiatry, NIMHANS, Bangalore, India Department of Biostatistics, NIMHANS, Bangalore, India d Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, School of Medicine, United States b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 20 January 2015 Received in revised form 14 March 2015 Accepted 26 April 2015
The Broad Autism Phenotype Questionnaire (BAPQ) which is a reliable, efficient and easy to administer instrument is used to assess the Broad Autism Phenotype (BAP). In order to understand cross cultural perspectives using this instrument, a key process is translation of the instrument. The process of translation is often overlooked and hence the quality of the translated instrument may suffer. This paper highlights the robust process adopted for translating the BAPQ into one of the Indian languages – Kannada, using the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and World Health Organisation (WHO) guidelines. The translated instrument was tested on a pilot sample of parents of 10 children with ASD and parents of 11 typically developing children. The results are in congruence with the published literature. ß 2015 Elsevier B.V. All rights reserved.
Keywords: Broad Autism Phenotype Broad Autism Phenotype Questionnaire Translation ISPOR guidelines WHO guidelines
1. Introduction Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social communication and interaction, and restricted repetitive patterns of behaviour. It is now well known that ASD has a strong genetic component and that relatives of ASD are at a higher risk for the disorder. Twin and family studies conducted by many research groups have indicated hereditary factors in ASD (Bailey et al., 1995; Bolton et al., 1994; Folstein and Rutter, 1977; Piven et al., 1997a). The core features of ASD that are also present in other family members of individuals with ASD, albeit in much milder forms, but not meeting diagnostic criteria for ASD, is called the ‘‘Broad Autism Phenotype’’ (BAP). It has been reported that 20–50% of family members of individuals with ASD exhibit at least one BAP feature (Bolton et al., 1994; Dawson et al., 2007). Assessment of BAP traits is a challenge and various research groups have employed different assessment methods such as direct measures, measuring the BAP domains separately e.g.
* Corresponding author at: Department of Speech Pathology and Audiology, NIMHANS, Hosur Road, Bangalore 560029, India. Tel.: +91 98865 89656. E-mail address: [email protected] (S.S. Meera). http://dx.doi.org/10.1016/j.ajp.2015.04.013 1876-2018/ß 2015 Elsevier B.V. All rights reserved.
Pragmatic Rating Scale (PRS) (Landa et al., 1992) and the Modified Pragmatic rating Scale (MPRS; Ruser et al., 2007) or interviewbased family history data, e.g., Family history Interview (Bolton et al., 1994) and Family History Schedule, (Piven et al., 1997b). Some of the newer instruments to assess the BAP include, the Broader Phenotype Autism Symptoms Scale: BPASS (Dawson et al., 2007) Social Responsiveness Scale: SRS (Constantino and Todd, 2005), Autism Spectrum Quotient: ASQ (Baron-Cohen et al., 2001) and the Broad Autism Phenotype Questionnaire: BAPQ (Hurley et al., 2007) The BAPQ has been reported to be an efficient, reliable, easy to administer questionnaire with a good replicable proposed factor structure in comparison with the other tools like the ASQ and SRS, within the general population (Ingersoll et al., 2011). The BAPQ has been specifically designed as a self and informant measure of the BAP, unlike many other questionnaires which were originally developed to identify individuals with ASD and later on used to evaluate the BAP also. For efficient implementation of this instrument across different linguistic cultures, it has to be translated to a language specific to the test population/region. The BAPQ has now been adapted from English to six other languages viz., Chinese, Japanese, Croatian, Portuguese, Turkish and Hebrew. For the first time the BAPQ has been translated to an Indian language – Kannada, a language that is spoken in the state of
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Karnataka, Southern India, one of the several principal languages spoken in the country. The purpose of reporting the development of the Kannada version of the BAPQ is to document the process adopted for the translation process. Additionally and more importantly, a description of the process may perhaps become a basis for translation of the tool into many other languages in India for research and clinical applications. Thus, the aim of the current study was to develop a Kannada version of the BAPQ and pilot test it on parents of children with ASD. 2. Materials and method 2.1. Description of the BAPQ The BAPQ assesses an individual’s personality traits and language characteristics in three domains namely; aloof personality, pragmatic language and rigid personality. The three domains are parallel to the three cardinal areas of impairment in autism. Moreover, these areas are considered as key features of the BAP in parents of individuals with autism (Losh et al., 2008; Piven et al., 1997a,b). The aloof personality domain is characterized by a lack of interest in social interaction; the pragmatic language domain is described as difficulties in maintaining a conversational use of language; rigid personality domain is characterized by difficulty in adapting to change and need to follow routines. It consists of 36 statements, where each statement is rated on a 6-point Likert scale (1 = very rarely, 6 = very often). Scores in the three subscales (Aloof, Pragmatic Language, and Rigid) are analyzed separately as domain scores. Each statement is rated by both the individual (selfscores) and the spouse (informant scores). An average of the two is taken to arrive at the best estimate score. Finally a total score is arrived at by summing the score an individual gets on all the three domains as a Total Self (TS) score, Total Informant (TI) score and Total Best estimate score (TB). Higher scores are indicative of possible presence of the BAP feature. The BAPQ has cut off scores originally proposed in 2007 (Hurley et al., 2007) and later revised in 2013 (Sasson et al., 2013). These scores allow an individual to be placed categorically as BAP+ and BAP-, which correlates well with the M-PAS-R/PRS (Hurley et al., 2007). 2.2. Translation of the BAPQ instrument The translation guidelines of the International Society for Pharmacoeconomics and Outcomes Research: ISPOR (Wild et al., 2005) and the World Health Organisation (WHO) were used for the translation work. Though the ISPOR guidelines essentially highlight principles of good practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes (PRO) measures, this was adopted for the translation process since it has rigorous and detailed guidelines. While the WHO provides a framework with four steps viz., Forward translation, Expert panel back-translation, Pre-testing and cognitive interviewing and Final version, the ISPOR guidelines define many more steps viz., Preparation, Forward Translation, Reconciliation, Back Translation, Back Translation Review, Harmonization, Cognitive Debriefing, Review of Cognitive Debriefing Results and Finalization, Proofreading and Final Report. Though the ISPOR has more steps, the WHO describes the crucial steps (e.g. back translation) in greater detail. Therefore, the guidelines from ISPOR and WHO were adopted and the steps, from both, which were appropriate for the current study were employed and have been described in the Table 1. To maintain conceptual equivalence of a word/phrase/sentence and not a word-for-word translation between English and Kannada, a back-translation was conducted. First, the BAPQ was translated into Kannada by two independent forward translators
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who were native Kannada speakers, one being an author of this paper (NS). A third independent translator and the author (NS) worked in unison to finalize a single forward translation. The back translation step was carried out by three individuals well-versed in English and Kannada. All were native speakers of Kannada and studied English as their first language and medium of instruction in school and college for over 12 years. The three versions of the back translation were compiled and reviewed by one of the authors (SSM). All the three versions were similar in the meaning they conveyed though they were worded differently. For example, to the original statement ‘‘People have to talk me into trying something new’’, the three back translated versions were; (i) ‘‘Others have to push me to try something new’’, (ii) ‘‘Others have to coax me to try out new things’’, (iii) ‘‘I need others to push me or encourage me to try anything new’’. The compiled version was sent to the authors of the English BAPQ instrument (JP & MP) for independent review and expert comments. Authors identified six of the 36 statements as not matching with the original version. For example, to the original statement ‘‘I like to closely follow a routine while working’’ the back translated version was ‘‘I stick to routine’’. The authors of the original instrument asked for a word in Kannada to be added that would give a meaning of ‘‘I stick to routine in my work/in work’’. Suggestions received from these authors were incorporated and the above mentioned process was repeated from the first step-forward translation. Cognitive debriefing [i.e. testing the instrument on a small group of relevant patients or lay people (with an informed consent) in order to test alternative wording and to check the understandability, interpretation, and cultural relevance of the translation] was carried out on 20 spousal pairs representing upper, middle and upper lower SES (10 parents of children with Autism Spectrum Disorders, 10 parents of Typically Developing children). These participants were asked to explain what they understood when they read each statement/question. For example to the original statement ‘‘I like being around other people’’, one of the participant (also called a pre-test respondant) interpreted this as ‘‘I like mixing with other people/I like to move with other people’’. The Conceptual equivalence of this is ‘‘I like being around people’’. These participants were also asked to rate the instrument on a three-point scale; easy, ambiguous and difficult to understand. All participants (100%) rated the instructions as well as the questions/statements easy to understand. Finally, two independent judges who were well versed in Kannada literature proofread the questionnaire and the final version was printed. 2.3. Administration of Kannada BAPQ Parents of 10 children with ASD (20 participants) and parents of 11 typically developing children (22 participants) were recruited for the study, after obtaining a written consent from each participant as per the guidelines of the IRB. Detailed clinical evaluation and diagnosis of ASD based on the Diagnostic and Statistical Manual of Mental Disorders (2013) criteria was made by the Child Psychiatrist (CP) who had a minimum of 25 years of clinical experience in working with children with ASD. Parents of typically developing children who volunteered to participate were recruited only if their child had no history of delayed developmental milestones or scholastic difficulties, or no serious complaints from the school regarding the child’s behaviour and had satisfactory overall performance, which was comparable to children of his/her age. Both parents had to agree to participate and possess a minimum of 10 years of education and also be capable of speaking, reading and writing in Kannada to enable them to answer the questionnaire. Parents diagnosed with developmental disorders during their childhood or having known neurological or psychiatric illnesses were excluded from the study.
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Table 1 Describes ISPOR and WHO procedures for translational work and corresponding steps followed in the current study. Step (ISPOR)
Components/description (ISPOR)
Step (WHO)
Components/description (WHO)
In the current study
1.
Preparation (initial work carried out before the translation work begins)
Obtain permission to use instrument Develop explanation of concepts in instrument
Expert panel
The panel should include the original translator, experts in health, as well as experts with experience in instrument development and translation
2.
Forward Translation (translation of the original language, also called source version of the instrument into another language, i.e., the target language)
Development of at least two independent forward translations
Forward translation
Aim at the conceptual equivalent of a word or phrase, not a word-for-word translation
Obtained permission. It had a panel as mentioned in the WHO guidelines Explanation of various concepts in the instrument was developed in collaboration with authors of the instrument Two independent forward translations were made with provision of explanation of concepts in the instrument
Provision of explanation of concepts in the instrument to the forward translators
Simple, clear and concise in formulating a question. Target language should aim for the most common audience. Avoid use of jargon, colloquialism, idioms or vernacular terms.
3.
Reconciliation
Reconciliation of the forward translations into a single forward translation.
Nil
4.
Back Translation
Back translation of the reconciled translation into the source language.
Backtranslation
Consider issues of gender and age applicability Nil
Back translation by an independent translator, whose mother tongue is the source language and who has no knowledge of the questionnaire As in the initial translation, emphasis in the backtranslation should be on conceptual and cultural equivalence and not linguistic equivalence
5.
6.
Back Translation Review
Harmonization
Comparison of the backtranslated versions of the instrument with the original to highlight and investigate discrepancies between the original and the reconciled translation, which is then revised in the process of resolving the issues.
Nil
Comparison of back translations of multiple language versions with each other and the original instrument to highlight discrepancies between the original and its derivative translations, and to achieve a consistent approach to translation problems.
Nil
Nil
Nil
Forward translators were instructed to aim at achieving conceptual equivalence, to make questions simple, clear, concise to avoid using jargon (if any) and to keep the most common audience (people who use Kannada for their day-to-day activities and those who could read Kannada newspapers) in mind while translating the document A third independent translator and the primary translator worked in unison to finalize a single forward translation This was carried out by three individuals well-versed in the source language as well as the target language. All three were native speakers of the target language and studied English (Source language) as their first language and medium of instruction in school and college for over 12 years. Need for conceptual equivalence was stressed upon. We could not find individuals whose mother tongue was English (source language) but we made sure that the back translators were proficient in both spoken and written English. The three versions of the back translation was compiled and reviewed by the researcher and was sent to the authors of the instrument for independent review and expert comments Suggestions given by the authors of the original instrument were incorporated and step 2, 3 and 4 were repeated where the back translation version did not match the original question NA
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Table 1 (Continued )
7.
Step (ISPOR)
Components/description (ISPOR)
Step (WHO)
Components/description (WHO)
In the current study
Cognitive debriefing
Testing the instrument on a small group of relevant patients or lay people in order to test alternative wording and to check understandability, interpretation, and cultural relevance of the translation
Pre-testing and cognitive interviewing
Pre-test the instrument on the target population Pre-test respondents (PTR) should include individuals representative of those who will be administered the questionnaire PTR should number 10 minimum for each section. They should represent males and females from all age groups and different socioeconomic groups PTR should be administered the instrument and be systematically debriefed. This debriefing should ask respondents: What they thought the question was asking? Whether they could repeat the question in their own words? What came to their mind when they heard a particular phrase or term? Any word they did not understand as well or found unacceptable or offensive It should also ask them to explain how they choose their answer The answers to these questions should be compared to the respondent’s actual responses to the instrument for consistency Finally, when alternative words or expressions exist for one item or expression, the PTR should be asked to choose which of the alternatives conforms better to their usual language This step is to be conducted by an experienced interviewer –
This step was done on 20 spousal pairs (parents of 10 children with Autism Spectrum disorders, parents of 10 Typically Developing children)
8.
Review of Cognitive Debriefing Results and Finalization
9.
Proofreading
10
Final Report
Comparison of the patients’ or lay persons’ interpretation of the translation with the original version to highlight and amend discrepancies Final review of the translation to highlight and correct any typographic, grammatical or other errors Report written at the end of the process documenting the development of each translation
–
Final version
Document as a result of all the iterations described above
Documentation
Initial forward version A summary of recommendations by the expert panel The back-translation A summary of problems found during the pre-testing of the instrument and the modifications proposed The final version
All participants went through all the debriefing steps They found the instructions and questions in the questionnaire easy to follow
No discrepancies were found
This was done by two experts who worked together and are well versed in the target language (Kannada) Report made
ISPOR, International Society for Pharmacoeconomics and Outcomes Research; WHO, World Health Organisation; Nil, step not included in the guidelines; NA, not applicable.
3. Results Preliminary t-test and x2 analyses were employed to check for comparability between the ASD and TD groups. Index children in both the ASD and TD groups were comparable on age. However, there were more males in the ASD group (attributed to ASD being more prevalent in males). Parent characteristics were comparable
on age, socio-economic status (SES), education and number of years of being married to each other as given in Table 2. 3.1. Group differences in BAPQ scores between ASD and TD parents A Mann–Whitney test was conducted to evaluate the group differences in the BAPQ Total Best estimate score and for the best
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66 Table 2 Group characteristics of the two study groups.
Index child’s age (months) Parent age (years) Index child’s gender
ASD
TD
p Value
(mean SD)
87.30 52.82
86.73 65.27
0.975y
(mean SD) Males
40.35 6.71 18 (90.0%)
37.59 7.87 10 (45.5%)
0.231y 0.008^
Females SES Education Years married y ^
2 (10.0%)
12 (54.5%) 1.000y 0.251y 0.903y
Not significant. <0.01.
estimate scores of the three subscales namely, Aloofness, Pragmatic Language and Rigidity. Best estimate scores have been reported here on the belief that they reflect a fair rating of an individual (Table 3). Due to limited sample size further analysis on each subscale in terms of self and informant scores was not attempted. 4. Discussion The emergence of BAPQ as a widely used and sensitive research instrument has lent itself to be translated in to six different languages. The BAPQ in Kannada has become the seventh language version and the first Indian language. The ISPOR and WHO guidelines, which are robust and systematic, have been adopted by this study as a standard protocol for the translation work. The guidelines indicate the need for a back translation procedure which is an accepted standard for validating the ‘fidelity’ of the translated instrument in comparison to the original. After completion of the due process, BAPQ-Kannada was administered on a pilot group. Results from the pilot study revealed that scores on the Total Best estimate (TB), Aloofness Best estimate (AB) and Pragmatic Language Best estimate (PLB) were significantly different between the ASD and TD group. This result is in line with previously reported literature (Hurley et al., 2007; Sasson et al., 2013). This indicates that the Kannada translation also provides similar results as reported previously for the above mentioned subscales. However, in the current study there were no statistically significant differences on the Rigidity Best estimate (RB) score between the ASD and TD groups. Lack of this significance could be attributed to insufficient power of the study as well as possible cultural differences/variability in responding to the questionnaire which warrants further research. Another important contributor to this difference could be the concept of rigidity itself which is hard to fit into a dimensional scale. Further analysis on each subscale in terms of self and informant scores also becomes important which was not attempted in the present study due to
Table 3 Comparison of best estimate scores of the BAPQ between the two groups. Variable
AB PLB RB TB
Min–Max (median)
p Value
ASD (n = 20)
TD (n = 22)
1.63–4.21 1.67–3.38 2.00–4.67 1.83–3.63
1.42–3.54 1.67–2.92 1.88–4.13 1.65–3.04
(2.75) (2.42) (3.31) (3.00)
(2.46) (2.02) (3.27) (2.64)
0.043* 0.009^ 0.900y 0.013*
AB, Aloof Best estimate; PLB, Pragmatic Language Best estimate; RB, Rigid Best estimate; TB, Total Best estimate. y Not significant. * <0.05. ^ <0.01.
limited sample size. Sasson et al. (2014) have reported that selfscores may under-report the magnitude of the problem especially by fathers who are positive for BAP and thus informant scores will prove useful. Since the best estimate scores are an average of self and informant scores, it is important to view these scores with caution. While the ISPOR includes all steps of the WHO guidelines, the latter was also used since steps such as forward translation, backtranslation, pre-testing and cognitive interviewing have been described in greater detail. Some differences, strengths and limitations in the two guidelines are as follows. The WHO guidelines give importance to an expert panel who will be involved in the translation, to guide and monitor the process. In the ISPOR guidelines, the number of translators (two) required for the forward translation has been specified whereas no such details are given in the WHO. Therefore the extra step – Reconciliation (see Table 1) is provided for in the ISPOR and not in the WHO guidelines. The WHO guidelines has explicitly stated the need for conceptual equivalence in both forward translation and back translation – a very important concept particularly because translation from English to Kannada and back to English cannot be solely achieved by word to word translation. This is a challenge whenever an investigator attempts to translate the original tool to the required language. To state an example for conceptual equivalence in the present study, to the original statement ‘‘I lose track of my original point when talking to people’’, the back translated version was, ‘‘Most often during a conversation I do not touch upon the main point of a discussion’’. This did not match the original version in meaning. Another round of forward and back translation was carried out after which the conceptual equivalence came through. The new version was ‘‘While talking/conversing, I veer away from the main/original topic or while talking/conversing, I fail to concentrate on the main topic/lose track of the main topic’’. Furthermore, the original English version also had to be modified (with permission) based on conceptual equivalence, to suit the social framework of the English speaking Indian population. For example, to the original statement ‘‘People have to talk me into trying something new’’ the modified version (indicated in parenthesis in the tool after the original statement/question) was ‘‘People have to coax/convince me to try new things). The ISPOR on the other hand has given importance to the back translation review step, wherein, the backtranslated versions of the instrument are compared with the original in order to highlight and investigate the discrepancies between the original and the reconciled translation. In this study, the back translated versions were compiled and sent to the authors of the original instrument for expert review and comments. This step, as mentioned earlier, is an accepted standard for validating the fidelity of the translated instrument. In the WHO guidelines, the cognitive debriefing step is presented in great detail and is clearly defined, in comparison to the ISPOR guidelines. This step is also crucial because the tool/instrument is tested on the target group and checked for ease of understanding, acceptability of terms etc. The participants on the current translated version found no difficulties/or had no complaints about the questionnaire in terms of sentence comprehension and reported no ambiguity. The rigorous guidelines were strictly adhered to and the quality of the translated instrument is reflected in the 100% positive report provided by the participants. The authors recommend a combination of the ISPOR and WHO guidelines as adopted in the current study be followed for translating different tools, to achieve high standards. Since India is a multi-lingual and multi-cultural population, the instrument has a vast scope to be translated into many other languages and lead to evaluation on a larger population to understand cross cultural variations.
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Role of funding source This research has not received any outside or institutional funding. No financial interests, direct or indirect, exist for the individual contributors in connection with the content of this paper. No sources of outside support were present for this work. Author contributions We certify that we have participated sufficiently in the intellectual content, conception and design of this work or the analysis and interpretation of the data (when applicable), as well as the writing of the manuscript, to take public responsibility for it and have agreed to have our name listed as a contributor. This work is not being considered for publication in another journal. We give the rights to the corresponding author to make necessary changes as per the request of the journal, do the rest of the correspondence on our behalf and she will act as the guarantor for the manuscript on our behalf. Conflict of interest None declared. Acknowledgement We would like to thank Dr. Girish N. Rao, Department of Epidemiology, NIMHANS for his guidance with the translation work. References American Psychiatric Association, 2013. Diagnostic and Statistical Manual of Mental Disorders. American Psychiatric Association, Washington, DC. Bailey, A., Le Couteur, A., Gottesman, I., Bolton, P., Simonoff, E., Yuzda, E., Rutter, M., 1995. Autism as a strongly genetic disorder: evidence from a British twin study. Psychol. Med. 25 (1), 63–77. Baron-Cohen, S., Wheelwright, S., Hill, J., Raste, Y., Plumb, I., 2001. The Reading the Mind in the Eyes Test revised version: a study with normal adults, and adults
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