Translation and Cultural Adaptation of Research Measures: An Essential Step Toward Health Equity Free

“We were discharged at 11am but miscommunication with the staff got us out of the hospital at 8pm,” shares Wendy Polanco, a bilingual Spanish-speaking parent. “I went home and spent three more days going back and forth to primary care and to see my child’s specialists.”

Patients and families using languages other than English (LOE) for medical care experience worse outcomes in medical settings compared with patients whose primary language is English, including increased risk of preventable adverse events.¹  Patients using LOE are more likely to experience postdischarge challenges, including unanswered questions regarding discharge instructions and assistance obtaining their prescriptions.²  Thus, it is important to understand patient, family, and clinician experiences with processes that may lead to inequities in care, including the hospital-to-home transition.

“Recently, at the beginning of my night shift I was asked to teach a Portuguese-speaking family about asthma and review their discharge instructions. Unfortunately, there were no translated discharge instructions available for the family,” notes Andrea Loureiro, a bilingual Portuguese-speaking nurse. “The plan was for discharge the next day, and even then, it was not enough time to request the discharge instructions to be translated in Portuguese. I felt uneasy, so I had a Spanish asthma book which I also gave the family to review as they explained to me that they did understand some Spanish. However, it would have been beneficial for the family to have a copy of their discharge instructions in Portuguese.”

In the article by Squires et al,³  the authors describe their process of translating and culturally adapting into Spanish a caregiver-reported quality measure about the transition from hospital-to-home, the Pediatric Transition Experience Measure (P-TEM). The P-TEM was previously validated and psychometrically tested in English. The study authors took a team consensus approach, which included clinicians, bilingual research coordinators, and Spanish and English translators who met to discuss the translated measure. The team then pilot-tested the P-TEM with Spanish- and English-speaking families to assess face validity and comprehension. After this process, the study authors revised several translated concepts in the P-TEM to improve clarity in the Spanish version.³ 

Of note, the process of Spanish translation led to improvements in the English version of the P-TEM. Questioning the meaning behind each word and idea during group discussions of the Spanish version highlighted important English terminology changes to enhance clarity and understandability. For example, the item, “I felt confident about how to care for my child at home” was clarified to, “I felt prepared for taking care of my child’s medical needs at home” (Supplemental Table in Squires et al³ ). The study found that Spanish-speaking caregivers demonstrated higher mean P-TEM scores (scored 0 to 100, with higher scores reflecting better quality) and top-box responses. Future studies in multiple languages, with larger sample sizes, and other modes of survey administration are needed to better understand the hospital-to-home transition experiences of families with LOE.³ 

The strengths of the study include an innovative and rigorous approach to translating a measure that previously existed only in English. Additionally, it was notable that the team consensus process and patient pilot-testing resulted in modifications to the English measure, indicating that a rigorous process of translation and cultural adaptation from the outset rather than post hoc leads to a better measure for all families and patients. Limitations of this study include the single-site design and that the P-TEM was initially developed in English and was later translated into Spanish (rather than multiple languages). Additionally, the article does not explicitly discuss health literacy as a consideration when developing study measures.

This study highlights the importance of translating measures into the languages spoken by the patients and families we serve. Literature and guidelines exist describing recommended steps in translating and culturally adapting research tools.^4,5  Some proposed steps for culturally sensitive translation include forward translation, backward translation (with a different set of translators), the resolution of translation differences with a committee, pretesting with patients, making changes based on pretesting, and tests of cultural equivalence (ensuring that concepts studied have similar meaning across cultures).⁶  In terms of health care delivery, the Department of Health and Human Services Office of Minority Health published the National Standards for Culturally and Linguistically Appropriate Services in Health Care in 2001 to address inequities in health service delivery, and enhanced National Culturally and Linguistically Appropriate Services Standards were developed in 2013.⁷  These standards provide a set of structured guidelines for organizations to provide equitable care, such as offering language assistance to individuals who use LOE or have other communication needs in a timely manner at no cost, ensuring the competence of interpreters, and providing clear and understandable print materials and signs in commonly used languages.⁸ 

Sarah Roberts, a Spanish interpreter, states, “I have seen so many families discharged with what their care team thought were Spanish instructions, but really it was only a template where the header of each section was in Spanish, but none of the instructions were translated. It makes me very uncomfortable to participate in a discharge where the patient isn’t receiving any written instructions in their language, and I’ve seen it time after time.”

Several challenges have been identified in adapting study measures in languages other than English, including ensuring translated instruments are culturally equivalent when used among different populations and that translated items are generalizable.^9,10  Additionally, translation is a process of decoding and coding. The original text, or source text, must be analyzed and the deep meaning understood. A good translation, or target text, should have the equivalent effect on the readers as the source text. There is a lack of literature about discharge translation and outcomes in the inpatient setting, particularly among pediatric patients and their families. Translated measures will help improve our understanding of discharge outcomes among all patients.

From a research and quality perspective, there are several steps we can take to develop more equitable survey and research tools: (1) translations of surveys and other questionnaires should occur early during study design, (2) research funders should set the expectation that study measures are translated into the most common languages spoken by the study population, (3) researchers should budget accordingly and plan their approach to cultural adaptation and translation during the initial measure development process, and (4) the standardization of translation and cultural adaptation could be guided by a consortium of bilingual researchers who advise on similar projects.

This study provides a thoughtful approach and description of the translation and cultural adaptation process of the P-TEM to Spanish. We applaud the authors for creating a model for future researchers and funders for translating a measure that advances equity in research and quality initiatives. The improvement of both the English and Spanish versions of the P-TEM suggests that when study teams create or adapt measures, the translation process should occur during initial development. Early translation and cultural adaptation of research and quality measures not only advances equity for patients who speak languages other than English, it creates a better measure for all patients and caregivers.