Abstract
Background:
The BREAST-Q reconstruction module, a patient-reported outcome measurement tool, is widely used to assess the impact of breast surgery on patient satisfaction and health-related quality of life. However, translation to the Indonesian language has not been attempted or used for Indonesian-speaking women with breast cancer.
Methods:
The Indonesian translation of the BREAST-Q reconstruction module was performed in accordance with the International Society of Pharmacoeconomics and Outcomes Research guidelines, which included forward translation and reconciliation, back translation and review, cognitive debriefing, and cultural adaptation. The respondents who participated in the cognitive debriefing process were recruited from the Metropolitan Medical Centre Hospital, Dr. Cipto Mangunkusumo Hospital, and the Indonesian Breast Reconstruction Support Group.
Results:
The reconciliation meeting revealed that 34.8% of the translated items were discordant between the 2 forward translations, whereas the back-translation review revealed that 11 out of 279 items were discordant between the translated questionnaire and the original version. During the cognitive debriefing process, several comments and recommendations were produced, which were derived from the difficulties of understanding the questionnaires and the cultural context based on local norms, sociodemographics, and religious beliefs.
Conclusions:
The Indonesian translation of the BREAST-Q reconstruction module has been conducted according to the International Society of Pharmacoeconomics and Outcomes Research guidelines.
Takeaways
Question: How to make a translation of a patient-reported outcome measurement tool, namely the BREAST-Q reconstruction module, which is designated for Indonesian-speaking breast cancer patients?
Findings: The translational study is conducted according to the International Society of Pharmacoeconomics and Outcomes Research guidelines, comprising forward translation, back translation, cognitive debriefing, and cultural adaptation.
Meaning: The translation has been conducted according to the International Society of Pharmacoeconomics and Outcomes Research guidelines and is ready to use for Indonesian-speaking women.
INTRODUCTION
Breast cancer is the most common cancer among women in Indonesia, accounting for 30% of all malignancies according to the Ministry of Health, Indonesia, in 2013.1,2 The growing prevalence and new evidence of treatments have influenced women with breast cancer to undergo either breast-conserving therapy or mastectomy.2–4 These modalities provide good overall survival outcomes and the possibility of recurrence. Often, women who undergo these procedures undergo postmastectomy breast reconstruction after experiencing challenges related to body image and self-esteem.4 The number of women in the United States who underwent breast reconstruction after mastectomy was approximately 101,600 women in 5 years, whereas a single-center study in Jakarta, Indonesia, showed a prevalence of 36%.3,4 Despite not having a clear prevalence rate of breast reconstruction in Indonesia nationwide, there might have been a shift in patient attitudes toward breast reconstruction postmastectomy, which is influenced by improvements in surgical techniques.4
Breast reconstruction is expected to influence the functional and psychosocial well-being and satisfaction of postmastectomy patients. These determinants must be measured and identified because differences in perception with the surgeon might exist. Therefore, a patient-reported outcome instrument is required to evaluate these determinants objectively. Many patient-reported outcomes have been developed and compared, and several systematic reviews have shown that the BREAST-Q reconstruction module provides better evidence for evaluating determinants.5–7
The BREAST-Q reconstruction module is a recently established tool for assessing the impact of breast surgery on patient satisfaction and health-related quality of life.8 This tool was developed by Tsangaris et al8 and McMaster University, Toronto, Canada, to evaluate, support, and compare the quality metrics and surgical practices in oncological breast and plastic surgery. This questionnaire consists of several modules, which are “augmentation,” “reduction/mastopexy,” and “breast cancer.” These modules evaluate the patient’s condition in both pre- and postoperative contexts.
However, using this tool might be a significant hindrance due to patient language barriers, as English is not widely spoken in Indonesia. Patients might have a poor understanding of the given questions, which influences the deviation of the results. Several cultural contexts irrelevant to the questions could be poorly understood by Indonesian women.
Due to the effectiveness of the BREAST-Q reconstruction module in evaluating patient feedback, translation and validation attempts have been made in many languages, such as Danish, French, Japanese, and Portuguese.9–12 Thus, we aimed to have a BREAST-Q reconstruction module translated and validated for Bahasa Indonesia, in accordance with the protocol of the original author, which was later used as a standardized tool to assess patients’ perceptions of health-related quality of life and satisfaction.
METHODS
This study took place in Jakarta from July 2023 to April 2024 and followed the protocol given by the Q-Portfolio team, which was also in accordance with the guidelines from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the World Health Organization.13,14 The steps of the research involved the following:
Preparation: The study was approved by the ethics committee of the Faculty of Medicine, Universitas Indonesia (23-07-1379). Permission was also obtained from the Q-Portfolio team and McMaster University, the developers of the BREAST-Q reconstruction module.
Forward translation: Two forward translators whose nationality was Indonesian were required to translate the text from English to their mother tongue (Bahasa Indonesia). These translators were selected from a medical translation company with a thorough standardized process that required them to have certifications of English as a second language skill (ie, Test of English as a Foreign Language or International English Language Testing System). The translators eventually held meetings to synchronize the translations, compare them, and resolve any inconsistencies. This led them to 1 translation summary to be conducted during the next research step, namely, back translation. This translation was deemed version 1.
Back translation: One back translator, whose native language was English, was selected based on their fluency in Bahasa Indonesia. This translator was also part of a medical translation company that underwent a thorough recruitment process as a professional translator. This translator was not given the original English version of the questionnaire and was asked to translate the synchronized forward translation (version 1) to English. The result of the translation was deemed version 2.
Back-translation review: An expert panel meeting consisting of bilingual clinicians with expertise in the given patient group and translators was held to review the back translation (version 2). The panel will determine the relevance of Indonesian translation and comprehension. After the translation was thoroughly reviewed, the translation (version 3) was used for the next step, namely, cognitive debriefing interviews.
Cognitive debriefing interviews: The interviews using version 3 were conducted with breast cancer patients who underwent breast reconstruction with the goal of identifying whether the components of the translations were understandable to the patients (ie, the items, instructions, and response options). Any difficulties mentioned by the patients were addressed to make several changes to the translation. All feedback from the patients was gathered, reviewed, and later considered for retranslation and retesting. This was developed into version 4.
Proofreading: The results of the postcognitive debriefing translation (version 4) were proofread by clinicians, who ensured minimum errors in establishing the final version of the Indonesian BREAST-Q reconstruction module.
Ethical Approval
This study was approved by the ethics committee of the Faculty of Medicine, Universitas Indonesia, with protocol no. 23-07-1379, and fully funded by Universitas Indonesia’s 2023 Research Grant. This study provided written informed consent and was conducted ethically in accordance with the ethics committee of the Faculty of Medicine, Universitas Indonesia, the Geneva Convention, and each center’s policy.
Selection of Cognitive Debriefing Participants
Breast cancer patients who underwent breast reconstruction at Dr. Cipto Mangunkusumo Hospital, Metropolitan Medical Centre Hospital, and the known Indonesian Breast Reconstruction Support Group were recruited and selected via consecutive convenient sampling. The inclusion criterion for patients who underwent breast reconstruction between January 2020 and December 2023 was breast cancer. All patients were required not to have intellectual disabilities to understand the questionnaire.
RESULTS
Translation Process: Version 1
The translation took place from July to November 2023. Version 1 of the translation was produced after reconciling 2 forward translations. The reconciliation process revealed inconsistencies and differences in wording and phrasing, accounting for 97 of 279 items (34.8%). (See table, Supplemental Digital Content 1, which displays the identified problems found at the reconciliation meeting of forward translation, http://links.lww.com/PRSGO/D974.) (See table, Supplemental Digital Content 2, which displays the identified problems found at the reconciliation meeting, http://links.lww.com/PRSGO/D975). The inconsistencies and differences arose from several problems, such as the limited vocabulary of adjectives in the target language to describe the items of the original questionnaire and the need for a more contextual understanding of the forward translators to the clinical settings.
The limited vocabulary of adjectives was a significant hindrance to obtaining translations similar to those of forward translators. For example, the subchapter “Physical Well-Being: Chest” contained several adjectives, such as “pain,” “tenderness,” and “aching feeling,” which were asked about in different items of the questionnaire. These adjectives had only 1 literal translation in Bahasa Indonesia, “nyeri.” To differentiate the described pain, the translators gave different reiterations, such as an additional word to express similar sensations of adjectives such as “nyeri tekan” or “rasa nyeri.”
Before the reconciliation, several items of the translated questionnaire were found to be irrelevant to the clinical setting. For instance, the item “How your breasts are lined up in relation to each other” was initially translated to have a literal meaning without prior knowledge of the term “breast sits,” hence sounding nonsensical. Thus, the project manager explained the item’s purpose at the reconciliation meeting. Second, the project manager also described the demographics of the women with breast cancer who underwent breast reconstruction procedures to the forward translators to produce relevant translated items that fit the custom and cultural context of the women. After the reconciliation process of forward translators, version 1 of the translated questionnaire was produced and used for the next step of the translation process.
Translation Process: Versions 2 and 3
The back-translation process for version 1 was performed by a native English speaker who understood the Indonesian language in accordance with the ISPOR steps. Version 2 of the questionnaire was produced. Version 2 was used during the back-translation review process to identify discrepancies between version 2 and the original English questionnaire.
The back-translation reviewer found 11 out of 279 items of version 2 to have different meanings than the original English questionnaire items. Most of the version 2 items, which were deemed to be different from the original one, were translated to have a literal meaning, yielding a different interpretation. This resulted from the back translator’s lack of understanding of the social customs and cultural context of the version 1 questionnaire items. For instance, the original instruction of “thinking of your sexuality, how often do you feel. . .” was back-translated to “when considering your sexuality value, how often do you feel . . ..” The justification for the additional noun to this item’s forward translation was to fit the customs and norms of Indonesian women, who mostly hold a modesty principle, preventing the possibility of the items sounding offensive and hindering the women from wanting to fill out the questionnaire.
In addition to social customs, version 1’s items were also produced considering the vast socioeconomic status distribution of the women. The use of “spasms” in the original questionnaire was then back-translated to “stiffness” (“kaku” in Indonesian) to cater to most women with different socioeconomic backgrounds instead of using a direct translation of “spasms” (“spasme” in Indonesian).
The other example of the literal translation of Indonesian to English leading to version 1 and original questionnaire discrepancies was the case of “move on” to being back-translated as “forget.” “melupakan” in Indonesian could serve a double meaning as both “move on” and “forget” when being put before the object grammatically.
The limited adjectives in the Indonesian language also led to discrepancies in the version 2 items and the original questionnaire items. For example, the previous use of “pain,” “tenderness,” and “aching feeling” to describe different pains in different items of the original questionnaire was back-translated as “pain,” “pain when touched,” and “pain without touch.”
The discrepancies between version 2 and the original questionnaire, which were found by the back-translation reviewer, were later explained by the project manager to the back-translation reviewer, resulting in version 3 being established and used for cognitive debriefing.
Cognitive Debriefing and Cultural Adaptations
Seven patients were included in the cognitive debriefing session using version 3 of the questionnaire to be tested. Several comments and recommendations arose from the cognitive debriefing session, which was derived from the difficulties of the women who underwent breast reconstruction in understanding the questionnaires. Table 1 displays the characteristics of the respondents in this study.
Table 1.
Respondent Characteristic
| No. | Age, y | Diagnosis | Treatment | Religion | Ethnic Group in Indonesia | Dominant Language | Educational Level |
|---|---|---|---|---|---|---|---|
| 1 | 59 | Unilateral right breast cancer T2N1M0 | LD flap | Islam | Sumatran | Indonesian | Master’s degree |
| 2 | 55 | Unilateral right breast cancer T2N2M0 | TDAP flap | Islam | Sumatran | South Sumatran | Bachelor’s degree |
| 3 | 50 | Unilateral left breast cancer T2N1M0 | DIEP free flap + NAC reconstruction + radiation | Islam | Javanese | Indonesian | Bachelor’s degree |
| 4 | 45 | Unilateral left breast cancer T2bN0M0 | LD flap + radiation | Christian | Celebese | Indonesian | Bachelor’s degree |
| 5 | 60 | Unilateral left breast cancer T4bN1M0 | DIEP free flap | Islam | Javanese | Indonesian | High school diploma |
| 6 | 45 | Unilateral right breast cancer T2N0M0 | DIEP free flap | Christian | Betawi | Indonesian | Master’s degree |
| 7 | 31 | Unilateral left breast cancer T2N1M0 | DIEP free flap | Islam | Javanese | Indonesian | Bachelor’s degree |
DIEP, deep inferior epigastric perforator; LD, latissimus dorsi; NAC, nipple–areolar complex; TDAP, thoracodorsal artery perforator.
Several translated items were found to sound awkwardly phrased; therefore, some suggestions were made to replace the sentences/words. The difficulties that arose from Indonesian cultural differences were mainly related to religious demographics and specific local values, which included modesty, gratitude, and views of sexual life privacy. (See table, Supplemental Digital Content 3, which displays the example of response and recommendation from the respondents during the cognitive debriefing, http://links.lww.com/PRSGO/D976.) (See table, Supplemental Digital Content 4, which displays identified difficulties during the cognitive debriefing, http://links.lww.com/PRSGO/D977.)
DISCUSSION
This study aimed to develop an Indonesian translation of the widely used patient reported outcome measurement (PROM) for breast reconstruction after breast surgery and evaluate its applicability by performing a cognitive debriefing of the translated PROM. Several challenges in translating the PROM, especially into the Indonesian language, were also shown in the Indonesian translation of other questionnaires.15,16 During the forward translation process, these studies also faced a similar problem of limited vocabulary in the Indonesian language. The first problem was that some literal approaches failed due to the limited number of adjectives and nouns in the Indonesian language. The other problem was that the interpretation of the items by the forward translators varied, leading to a different approach to expressing the word in Indonesia.15,16 However, there were more inconsistencies in the number of forward translators in our study than in 1 particular study (13.3%), primarily due to the complexity of the original Breast Reconstruction Questionnaire, which was demographically targeted at women with breast cancer.15
Similar problems we encountered in back translation were also shown in the Indonesian translation work of the CLEFT-Q15 and BREAST-Q breast-conserving therapy modules.17 The discrepancies between forward and back translations resulted from the limited vocabulary offered by the Indonesian language. Back translation was often performed using a literal approach by the back translators, leading to the removal of cultural context from the translation.15,17 In several Indonesian translation studies, differences in the grammar of back-translation results compared with the original questionnaire were noted. As the Indonesian language does not have a specific tense to indicate the timeline of the events, this resulted in different phrasing to emphasize the time of the event.16
During the cognitive debriefing, problems arose from the Asian cultural background, which had specific modesty values. This was also shown in the Filipino translation of the BREAST-Q reconstruction module.18 Several respondents commented on the negative connotation of translated work, leading to the revision of the questionnaire being imperative. The questions about sexual life in their study were then phrased in a less direct or offensive manner, similar to our recommendation. The study also emphasized minimizing the use of sexual innuendos to improve patient consent.18
Our study encountered a challenge, with some of our respondents refusing to answer the “Sexual Well-Being” section due to their conservative views of how sexual life should remain private. One study showed how Asian culture had an influence on patients’ willingness to hesitate to address sexual issues compared with Western culture. The study also showed how the topic is deemed embarrassing to Asian women as a matter of how it should be a private concern.18 The validation testing of the Japanese translation of the BREAST-Q module generated a high missing rate in the “Sexual Well-Being” domain, resulting in one of their recommendations to exclude the said subscale in their final translated work.10
There are vast demographic differences in Indonesia, especially in terms of religion and ethnicity, which influence the understanding of the standardized Indonesian language or the response to the translated Indonesian work. Several Muslim respondents of the Javanese ethnicity expressed hesitation and reluctance toward the “Sexual Well-Being” domain compared with Christian respondents of the Celebese ethnicity. Moreover, with the greater demographics of Muslims in Indonesia, questions regarding clothing were found to be irrelevant. Some items in the original questionnaire emphasized how the condition of breast cancer or the aftereffects of breast reconstruction influence women’s choice of clothing (eg, being confident in wearing a more revealing or tight outfit), whereas Muslim women who cover their body daily due to religious views could not relate themselves to the intention of the questions.19
One domain of the original questionnaire was intended to identify respondents’ expectations of how their breast looks after breast reconstruction. Several respondents in our study refused to answer the question because it would make them sound ungrateful. One respondent commented that she was already grateful for breast reconstruction access compared with the other women with breast cancer in Indonesia. This finding was in line with 1 Indonesian translation study on how behavior might be influenced by cultural norms in embracing their own conditions, especially with increased prioritization of their lives.15,20 Moreover, a study by Schmitt and Allik21 showed that people from Asia had lower self-esteem than people from Western countries, which might influence Indonesian women to be more accepting or not have any expectations of their breast appearance postreconstruction.20
CONCLUSIONS
The Indonesian translation of the BREAST-Q reconstruction module was conducted according to the ISPOR guidelines. The translated PROM is an imperative tool for assessing the quality of life of Indonesian women with breast cancer before or after breast reconstruction surgery. This PROM is also hoped to guide future interventions by Indonesian clinicians while considering patients’ quality of life. As this study already addressed the cognitive debriefing results, a future study of the validity and reliability of the translated PROM is imperative to address the applicability of the PROM more objectively.
DISCLOSURES
The authors have no financial interest to declare in relation to the content of this article. This study was funded by the Directorate of Research and Development, Universitas Indonesia, under Hibah PUTI 2023 (Grant No. NKB-666/UN2.RST/HKP.05.00/2023).
ETHICAL APPROVAL
The ethical approval of this research was obtained from the ethics committee of the Faculty of Medicine, Universitas Indonesia (No. 23-07-1379).
Supplementary Material
Footnotes
Published online 21 April 2025.
Presented at the 12th Triennial Congress and the 27th Annual Scientific Meeting of the Indonesian Association of Plastic Reconstructive and Aesthetic Surgeons, August 29–30, 2024, Solo, Indonesia.
Disclosure statements are at the end of this article, following the correspondence information.
Related Digital Media are available in the full-text version of the article on www.PRSGlobalOpen.com.
Raw data were generated and stored at the Division of Plastic Reconstructive Surgery, Department of Surgery, Faculty of Medicine, Universitas Indonesia. The data are not publicly available due to the private information of the patients. Derived data supporting the findings are available from the corresponding author upon reasonable request.
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