Translation Using Collaborative Translation Protocols and Initial Validation of the Filipino Version of Stroke Specific Quality of Life Scale for Stroke Survivors

Introduction

With the Republic of the Philippines being the world’s 13th most populous country and a multiethnic population approaching 112 million, the upswing of non-communicable diseases is greatly evident.[1] Based on the 2021 Philippine Statistics Authority, the top three causes of death in the country were ischemic heart diseases, cerebrovascular diseases and COVID-19 virus.[2] One in three Filipinos die prematurely from noncommunicable diseases (NCDs) before the age of 70 with stroke being the third leading cause of mortality and in terms of disease burden. According to the latest Philippine Statistics Authority (PSA) data published in 2022, stroke deaths in the Philippines reached 68,180 deaths or 9.7% of the total deaths and from being third in the previous year’s ranking it showed an increase of 16.6% from 58,476 cases in the same period in 2020. A lot of stroke patients cannot afford the large amount of money needed to provide proper health care. Although there are hospitalization services which the government provides for free, the patients carry the burden of purchasing medicines.[3]

The most common post-stroke complications were post-stroke mood and emotional disturbance which can manifest in a diverse pattern, and early recognition of these emotional disturbances and proper management may improve the patient’s quality of life (QOL).[4] Due to these post-stroke complications, clinical trials are promoting patient-centered care such as physical function and QOL which is broadly defined as a range of human experiences associated with one's complete physical, social and emotional well-being. It implies values based on patient satisfaction including its functional level and adaptation to treatment-related symptoms, and measures have been developed to provide a way of determining the impact of health care to people with chronic diseases or those with untreatable diseases. Several generic and disease-specific health-related quality of life (HRQOL) questionnaires are already available whereby generic HRQOL questionnaires are used mostly to compare outcomes across different populations and diseases while disease-specific instruments are preferably used for assessment of distinct states or concerns of specific diagnostic groups.

The stroke-specific quality of life (SS-QOL) is a specific and clinically relevant HRQOL measure for assessing post-stroke patients. It is a multifaceted patient-reported outcome measure used to assess the HRQOL issues relevant to post-stroke patients and the specific aspects of functioning. The scale consists of 49 questions that are grouped into 12 domains. Other countries like Denmark, Nigeria, Mexico and Germany have used and examined the validity of the SS-QOL scale.[5]

Because Filipinos have a high risk of stroke, evaluation of reliability and validity of the SS-QOL questionnaire is an important health objective. The researchers aim to adapt the use of these questionnaires in the Philippine setting by translating the SS-QOL in Filipino and validating the SS-QOL-Filipino version using the Collaborative Translation Protocols. The Collaborative Translation Protocols involves a group of people in which the members are knowledgeable about the study and questionnaire, together with knowledge about the cultural and linguistic skills needed to translate the questionnaire into its target language. This type of translation protocol allows social interaction between its members making them able to verbalize their thoughts and make decisions on mutual consensus during the meeting.[6]

As the Philippines rapidly progresses toward better population health and improved QOL for patients, this study can serve as a basis for a valid and appropriate outcome measurement tool. Although HRQOL is already used in the Philippines, there are no specific tools available for stroke patients. This study can be a source of a specific tool for stroke patients in assessing their QOL since the general HRQOL is not geared towards a specific disease. Using the SS-QOL will give health practitioners and patients specific outcomes that will cater to their needs.

Methodology

For the study design, a descriptive, cross-sectional research design was used as the method of choice in the study. The study population and setting includes stroke survivors in private and public hospitals and rehabilitation centers in Metro Manila who were recruited as participants. Inclusion and exclusion criteria are listed in Table 1.[7,8]

A purposeful/judgmental sampling design was used to gather the needed number of participants which were endorsed by medical experts in private and public hospitals and rehabilitation centers in Metro Manila. For the pilot testing, 10 participants were deemed adequate to give insights and ensure that the pre-final version of the SS-QOL-Filipino keeps its equivalence as per the previous SS-QOL translation studies.[9,10]

The researchers translated the Filipino version of the SS-QOL scale for stroke survivors using Collaborative Translation Protocols. The study was performed as shown in Figure 1. Translation-validity study was conducted to translate and validate the Filipino version of the SS-QOL scale. Following approval from the University of Santo Tomas Graduate School Ethics Review Committee (USTGS-ERC), the author of the original SS-QOL was contacted through email for permission to translate the scale into the Filipino language. The researchers then translated the SS-QOL questionnaire from English to Filipino using the collaborative translation protocols wherein it involves a group translating the text together, basing their decisions on a consensus. This type of translation was continued up to the succeeding steps of evaluation and finalization of the questionnaire, and the translation evaluation process was based on guidelines from Sentro sa Salin at Araling Salin of the University of Santo Tomas, College of Education. For the Filipino language expert evaluation, three language experts, who are knowledgeable of the English-speaking culture but are native speakers of the Filipino language were sought from the said institution.

The tool and guidelines used for technical translation and evaluation was based on the proposed evaluation tool of the Komisyon sa Wikang Filipino (as of March 2021) adapted by the UST Sentro sa Salin at Araling Salin. Based on the total scores in the evaluation tool used by language experts, an online FGD (Zoom meeting) was planned where it involved the three language experts from the UST Sentro sa Salin at Araling Salin as well as the researchers. The meeting identified and resolved inadequate expressions or concepts of the translation and came up with the pre-final version of the Filipino SS-QOL questionnaire. For the assessment of content validity, an expert committee in the field of medicine, specifically neurology was formed and consisted of three neurology consultants from the University of Santo Tomas, Faculty of Medicine and Surgery. The decision to have this expert committee was based on previous SS-QOL translations. The medical experts were given informed consent for participating as evaluators in the research and their ratings and comments were gathered through Google forms, which were composed of each item in both the SS-QOL English and SS-QOL Filipino. Each item was rated by medical experts as to its relevance (1-not relevant, 2-somewhat relevant, 3-quite relevant, 4-highly relevant) in order to measure the content validity through item level content validity index (i-CVI).[11] After which, a pilot testing was conducted with 10 stroke survivors to ensure that the instrument is applicable and readable for the target population. The goals of pilot testing were to evaluate the layout, clarity of instructions, responses, items and time spent on completion. This ensures that the adapted version is still retaining its equivalence in an applied situation. The pilot testing protocol that the study followed was based on the pilot testing process of research entitled “Validation of the MD Anderson Symptom Inventory Head-and-Neck—Filipino (MDASI—HN—F): clinical utility of symptom screening among patients with head-and-neck cancer”. The reason for utilizing this approach was due to its structured and objective type of evaluation. The pilot testing was also carried out through online Google forms which were composed of three parts. First, patients were asked to read the informed consent, affirm their decision to participate in the study and provide their data for demographics. Next, patients were asked to view and fill out the SS-QOL Filipino questionnaire. Subsequently, after accomplishing the questionnaire, patients were asked to evaluate the questionnaire according to ease or difficulty in understanding and answering, using the Likert scale from 1–5 (1 being very unsatisfactory; 2 unsatisfactory; 3 neutral; 4 satisfactory; 5 very satisfactory). Revisions were made by researchers and experts according to the recommendations of participants.[12] The ICC was then measured for the degree of agreement among the comprehensive rating scores given by the pilot participants.[13] Finally, after considering responses and comments in the pilot testing and ICC, further revisions to the SS-QOL Filipino were made and a final version was accomplished.

The outcomes to be measured included the language expert evaluation, content validity (i-CVI) from the comments and ratings of medical experts and ICC. Moreover, understandability and answerability were recorded through a 5-point Likert scale based on the patient’s responses in the pilot testing form. The demographics of patients were also collated and summarized, wherein the content of the demographics was based on the study of Lo, which is a Chinese version of the SS-QOL. The data collection method was a survey questionnaire (SS-QOL Filipino) which followed a structured approach and was precisely worded with a range of predetermined responses that the respondents can select, and since stroke patients’ QOL is the main outcome of interest of the study, the mode of administration was self-administered through an online platform.

For the study’s statistical analysis, content validity was measured through the item relevance ratings of medical experts. Analysis was done using i-CVI. Items with i-CVI higher than 0.80 were accepted, while those lower were subjected to discussion by the experts on whether to include the item or not.[11] The result of this process produced a complete translated version of the questionnaire. For the pilot testing, descriptive statistics was conducted to summarize the participants’ demographic and clinical characteristics. Moreover, ICC was calculated for the degree of agreement among scores produced by the pilot participants using IBM® SPSS® software. An ICC cutoff value was set at >0.40-0.60 (moderate agreement).[14] Finally, understandability and answerability of the SS-QOL Filipino were measured through a 5-point Likert scale found in the pilot testing form. The mode of responses was calculated and a score of ≥3 was deemed acceptable.

Results

Researchers forward translated the SS-QOL. The translation was further assessed by three Filipino language experts from the University of Santo Tomas Sentro sa Salin at Araling Salin. Items which obtained technical comments or a total score of 0-4 from the Language Expert Evaluation were subjected to FGD along with the researchers. Subsequently, three neurologists from the University of Santo Tomas Hospital were recruited to assess the face and content validity of the translated questionnaire. See Table 2 for the language experts’ focus group discussion results.

See Table 3 for the item relevance rating of neurology experts on the forward translated SS-QOL. Test on content validity of the forward translated SS-QOL is shown in Table 3. Three neurology experts rated the questions according to relevance. All translated items have an i-CVI of 1.0 thus rendering all items accepted.

See Table 4 for the test on face validity of the forward translated SS-QOL scale. Following content validity by medical experts, another revision was made after holding a FGD with the said experts for face validity. Table 4 summarizes the discussion and subsequent revision of each item.

See Table 5 for the demographic profile of participants for pilot testing. Table 5 summarizes participants for pilot testing. A total of 10 respondents answered the pilot version of the SS-QOL-F and the questionnaire on understandability and readability.

According to Landis and Koch, an ICC of >0.4 to 0.6 is considered moderate agreement.[14] The results yielded 0.761 in average measures ICC which is considered a strong agreement. In the 5-point Likert scale on understandability and readability, The mode for each item ranges from 3-5. Two comments were also noted.

Discussion

Quality of life encompasses an individual’s physical, social, and emotional well-being. As today’s clinical practice is based on evidence-based interventions, knowing the state of a patient’s quality of life allows a more holistic view of a patient and, thus, allows more patient-centered care. As such, it is integral to have a valid and appropriate objective measure to further knowledge and research on the most effective treatments. HR-QOL measures are being developed to determine the impact of a condition on their general health status, as well as their overall satisfaction and effectiveness of their corresponding interventions. With stroke being one of the leading causes of death and one of the top five diseases with the greatest burden in the Philippines.[15] Stroke survivors deal with varying degrees of physical and psychosocial challenges that greatly impact their quality of life. Despite its prevalence, there were no tools specifically developed to measure the quality of life of these patients in the Philippines. As per the researchers’ objectives, the SS-QOL scale was translated into Filipino and validated to act as the objective quality of life measure for stroke survivors in the Philippine setting.

The SS-QOL was previously developed in 1999 as a reliable, valid, and responsive measure of stroke-specific HRQOL across the range of stroke symptoms and severity.[7] It has already been translated and validated to various languages. Though the study mostly utilized the previously published SS-QOL translation studies as a guide, key differences are present. Firstly, this study’s scope reaches only up to the pilot testing. Next, the profile of this study’s sample differed from other studies in terms of the size (10 patients; 2 males, 8 females). One was from 18-35 age group, five were from the 37-55 age group, and four were older than 56. Two were single, six were married, and two were widowed. For educational attainment, one finished secondary, seven finished tertiary, and two attended graduate school. Five experienced ischemic stroke, two experienced hemorrhagic, two had both types, and one could not recall the type of stroke. Additionally, the expert committee composed of three experts specializing in neurology was based on the translation methods applied for the SS-QOL German,[16] Igbo,[10] and French.[9] It has been recommended, however, by one of the experts not to limit the specialty of the expert panel to neurology and to consider other specialties of medicine that would be dealing with stroke survivors (e.g. Family Medicine, Internal Medicine). As it is not included in the scope of the study, the researchers did not add or delete any part of the questionnaire.

To translate the questionnaire, the researchers focused on a conceptual rather than literal translation and the usage of natural and socially acceptable language for the Filipino audience. Though it is generally practiced, the usual backtranslation method in translation studies would not be able to grasp the equivalence in meaning and concept of certain texts, especially in source materials where idioms and colloquial language are used. As such, they utilized the Collaborative Translation Protocol (CTP), translating the source text (the SS-QOL) via a group discussion and based the final translation on the group’s consensus. With this, a more natural and less strained environment for discussion is created with different individuals with different skills and disciplinary expertise involved in the translation process.[6]

The researchers were able to establish face validity with minor revisions once the medical experts specializing in neurology reviewed, evaluated, and commented on each item to ensure that the items appeared to measure what it intended to measure just from the overall face of the questionnaire. High content validity was also noted among the neurology experts via assessment of item level content validity index (i-CVI). Given that it met the minimum quality requirement for an instrument, the translated questionnaire was established as a valid outcome measure tool for SS-QOL.

To make it further suitable for the target population, great care was placed into translating the SS-QOL to Filipino to represent any cultural, psychological, social, and idiomatic discrepancies that could affect its overall appropriateness and readability. The group made it so that the tone, style, tenses, and overall context of each item were revised as necessary to make them suitable for their respective domains. One example of this would be Item number 6 in the translated questionnaire, wherein it was clarified by the neurology experts during the group discussion that, instead of cutting a food with a knife when eating, Filipinos would usually bite the food directly to cut it, sometimes even opting out of using utensils at all and using their hands to eat (nagkakamay). Furthermore, they even mentioned that the use of “kutsara’t tinidor” is more common among the Filipinos rather than “kubyertos.” Based on these comments, “paggamit ng kubyertos” was removed and replaced with the terms “pagsubo at paglunok.” as it already includes the act of getting the food and putting it in the mouth. As such, the final revision for Item number 6 reads as “Nahirapan ka bang kumain, halimbawa, sa pagsubo, pagnguya o paglunok?” Another such dilemma was also encountered in Item number 39. The term “ugali” pertained to an individual’s personality instead of “pagkatao” given that the latter term could refer to the overall identity of the individual. In Item number 40, “pag-asa” was used instead of “pinanghinaan ng loob” since the term could also have something to do with the future and the latter term was not conversational to fulfill the cultural aspect. “Kapwa” was also chosen in Item number 49 to further focus on the concept of socialization.

The use of figurative concepts was also analyzed since some of the items in the questionnaire made use of phrases that could pertain to something other than its intended meaning or interpretation. As such, idiomatic expressions were deemed appropriate instead of using the literal translation. In Item number 12, “bahagi” was used instead of “panig” as the language experts advised that the latter term could have been pertaining to a social or political perspective instead of visual concepts as intended. In Item number 37, “naging iritable ako” was initially replaced with “naging mainitin ang ulo” given that the first translation was a subject of concern upon discussion with the language experts. However, upon discussion with the neurology experts, they advised to revise it back to the initial translation as it was a common conversational term used by Filipinos. Item number 38’s sentence style for the phrase “Naging maikli ang pasensya ko sa iba” also proved to be of concern during the group discussion, as it could be directly translated into “My patience is short.” As such it was suggested that a more idiomatic approach to translation be taken. Furthermore, “ibang tao”was used instead of “iba” since the former terminology pertains more to another personality and a person’s relationship with other people. Thus, the final revision for the item was listed as “Nawalan ako ng pasensya sa ibang tao.” The term “ipaunawa” was used instead of “ipaintindi” in Items number 15 and 17, as the tone of the word would be less imposing or insisting. In Item number 50, the word “pagkailang” was used instead of “para akong malayo” as it would be more direct to match the word “withdrawn,” an already direct term. Furthermore, in the same item, given the more negative tone and overall sense of the item, “ibang tao” was used instead of “kapwa” which has a more positive and personal tone.

Some of the items were revised based on the context the possibility of a neurological disease or entity. The term “mag-isa” was added to item number 8 to highlight the item’s ability to assess the post-stroke patient’s capability to take a bath by themselves, as noted in the FGD with neurology experts. Hemianopsia was a possible entity that was considered in the revision of Item number 12. Aphasia, a disorder which presents with speech disturbances, was also considered for Item number 16, thus, “bumuo ng salita” was used to better assess for this condition. The medical concept being considered in Item number 21 was revised to focus more on the difficulty in walking, based on the previous translation drafts of the questionnaire.

There was also the consideration of using more conversational and familiar Filipino terminology. This was best exemplified by Item number 51, in which the concern was that the original translations, though correct in the literal meaning, sounded unnatural when used in a typical conversation (“Maliit ang tiwala”). As such, the final revision was written as “Mababa ang kumpiyansa.” “Medyo mahirap gawin” was used for the quantifier instead of “mahirap gawin” given that “medyo” is a common conversational term. During the discussion for the translation for Item number 10, it was brought up by the medical experts that technology has evolved since the original version’s writing (1999). Thus, besides considering the original English question (“Did you have trouble seeing the television well enough to enjoy the show?”) in mind, as per the comments made, the researchers added the terms “tablet, laptop o iba pang gadget.” Though directly borrowed, the English terms added were retained as it is customary in language translation of words relating to technology. The same reasoning was applied to Items number 14 (added “cellphone”) and 27 (added “mag -type o mag -text”).

Grammatical revisions were also established for uniformity. The tenses and sentence construction in Items number 59 to 65 were revised to be patterned after Item number 58. The same could be said for sentence construction in Items number 67 to 69. In Item number 70, the group decided to revise “Ang pangkalahatang kalidad ng buhay ko ay…” to “Sa pangkalahatan, ang kalidad ng buhay ko ay…”

A form of cognitive debriefing employed for this study was to measure the SS-QOL-Filipino’s understandability (kakayahang maintindihan ang tanong) and answerability (kakayahang sagutin ang tanong) among the representatives of the target population and target language group to determine if the respondents understand the questionnaire in the same way the original SS-QOL would have been understood. Understandability was measured based on the ease of understanding the question and answerability was measured based on how easily the question was answered. Based on the answers of the 10 respondents who have answered all 62 items of the SS-QOL-Filipino as Filipino readers, the average mean for understandability and answerability responses is 4.05, which indicates that the translation was easy (madaling maintindihin/sagutin) to very easy (napakadaling maintindihin/sagutin) to understand and answer. Comments made were more on the applicability of the questions and the very content of the questionnaire. Some noted comments include: Item number 27 (“Nahirapan ka bang magsulat o mag-type?”) “Mahirap – Dahil mahirap pang ipihit ang aking kamay” ; Item number 42 (“Hindi na ako sumasama sa paglilibang ng pamilya ko.”) “Mahirap – Remember I’m single!!!”

To check for consistency and agreement among the questionnaire items, ICC was assessed. Once subjected to IBM SPSS software, the obtained ICC was 0.761, indicating a strong agreement among raters and high similarity between values from the same group.[14] An ICC of >0.4 to 0.6 would indicate moderate agreement.

Overall, the SS-QOL-Filipino has been shown to have high relevance (strong face and content validity), with items that are easy to very easy to understand and answer, and with excellent consistency and agreement among its items.

Conclusion

The English version of SS-QOL was successfully forward translated to the Filipino language using the Collaborative Translation Protocol. The translation was then evaluated by three Filipino language experts from the University of Santo Tomas Sentro sa Salin at Araling Salin. For the face validity, the concerns and suggestions raised by medical experts during the FGD were incorporated in the revised questionnaire.

The translated Filipino version of SS-QOL showed high content validity among the three experts in the field of neurology. Pilot testing was done to a desired population in which the results yielded a strong agreement on ICC. Therefore, the Filipino version of SS-QOL is a validated outcome measure tool in assessing the QOL among stroke patients in Metro Manila.

ACKNOWLEDGEMENT

The researchers would like to thank Dr. Eva Irene Y. Maglonzo, Dr. Ida Marie Tabangay-Lim and Dr. Warren R. Bacorro for providing group assistance and technical expertise to accomplish the study. The group also expresses their gratitude particularly to Dr. Johnny K. Lokin, Dr. Encarnita Ampil, Dr. Alejandro Diaz and Dr. Joseree-Ann Catindig for assisting the group with the dissemination of questionnaires and for providing their expertise. The researchers would also like to thank the stroke patients for allowing the group to obtain their data. This study is dedicated to them and would not have been possible without their participation, trust and willingness to share their experiences—making this meaningful contribution to stroke care in the Philippines.

DISCLOSURE AND CONFLICT OF INTEREST

No conflicts of interest were presumed to occur between the investigators, participants and publication.

AUTHORS CONTRIBUTION
1. Research Project: A. Conception, B. Organization, C. Execution
2. Statistical Analysis: A. Design, B. Execution, C. Review and Critique
3. Manuscript Preparation: A. Writing the First Draft, B. Review and Critique. 
 

• Angelica Marie V. Mandario, PTRP. MDa: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Gerald Neil SJ. Manalo. MD: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Marlo Eduardo M. Manalo, RMT. MD: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Jann Marielle M. Mangali. MD: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Erwin T. Manipol. MD: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Christine Beatrix Y. Manalo, RMT. MD: 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B
• Maria Minerva P. Calimag, MD, PhD: 1C, 2B, 2C, 3B
• Wennielyn F. Fajilan, PhD: 1A, 1B, 1C, 2A, 2B, 2C, 3B
• Elenita C. Mendoza, LPT, MA: 1A, 1B, 1C, 2A, 2B, 2C, 3B
• John Dale V. Trogo, LPT, MA: 1A, 1B, 1C, 2A, 2B, 2C, 3B
• Johnny K. Lokin, MD: 1A, 1B, 1C, 2A, 2B, 2C, 3B