Cultural Adaptation of Patient-reported Outcome Measures for Hindi-speaking Rheumatoid Arthritis Patients with Hand Involvement: A Qualitative Study Using Focus Group Discussions

Abstract

Background:

Rheumatoid arthritis (RA) frequently impacts the hands, causing significant functional limitations. While patient-reported outcome measures (PROMs) like the MHQ, HAQ-DI and PRWHE are vital for assessment, their effectiveness in diverse linguistic populations, such as Hindi speakers in India, hinges on cultural adaptation. This study explores the cultural adaptation needs of PROMs for Hindi-speaking individuals with RA with hand involvement.

Methods:

We conducted three focus group discussions (FGDs) with 24 Hindi-speaking RA patients experiencing hand involvement. Guided by a semi-structured interview guide, discussions explored daily life difficulties, experiences with existing PROMs and specific cultural adaptation requirements. Data underwent thematic analysis.

Results:

Participants reported widespread difficulties across self-care, household chores, work/school and essential activities of daily living (ADLs), including culturally specific tasks such as Indian cooking practices. Feedback on PROMs revealed issues with language comprehension, relevance and content omissions. Suggestions for cultural adaptation included specific Hindi terminology and emphasising the profound emotional and social impact of hand limitations.

Conclusion:

This study highlights the indispensable role of qualitative methods in the initial phase of cross-cultural PROM adaptation. Our findings provide crucial insights that will inform the development of PROMs for Hindi-speaking RA patients, ultimately ensuring greater cultural relevance, comprehensibility and more patient-centred care.

Keywords

Rheumatoid arthritis hand Hindi PROMs cultural adaptation

Introduction

Rheumatoid arthritis (RA) is a chronic autoimmune disorder predominantly affecting the joints, with the hands and wrists being frequently involved.^1,2 This often results in pain, swelling, stiffness and restricted hand function, significantly impacting quality of life and potentially leading to work disability.^3,4 Assessing functional status is crucial, and patient- reported outcome measures (PROMs) are vital tools for capturing patients’ unique perspectives on their health, symptoms and functional abilities, complementing clinical evaluations.^5,6 The increasing emphasis on patient-centred care highlights the importance of incorporating the patient’s voice into clinical practice and research, with PROMs providing valuable data for shared decision-making and individualised treatment plans.^7,8

India’s vast linguistic diversity necessitates that PROMs are not only translated but also culturally adapted to ensure accessibility and understanding across various language groups.^9,10 Hindi, being one of the most widely spoken languages in India, becomes a critical target for such PROM adaptation efforts.¹¹ It is essential to recognise that cultural nuances can significantly influence how individuals perceive and report their hand function and their ability to perform activities of daily living (ADLs).¹² Therefore, a direct translation of a PROM might not be sufficient to capture the experiences of Hindi-speaking individuals accurately. Cultural adaptation is paramount to ensure that the meaning and intent of PROM items are accurately conveyed and understood within this specific cultural context.¹³

Focus group discussions (FGDs) were specifically chosen over individual interviews or quantitative surveys because they offer a unique platform to facilitate group synergy and collective articulation of complex, culturally nuanced experiences. This method is superior for the initial qualitative adaptation phase as it allows researchers to observe how language is used in a social context, to explore differing opinions on terminology (e.g., specific Hindi words for ‘grasping’), and to achieve data saturation on a shared experience (RA with hand involvement) more efficiently than individual interviews.¹⁴ While quantitative psychometric properties are important, the detailed qualitative exploration of patient experiences during the adaptation process is often underreported.^15,16 By meticulously documenting the process and findings of FGDs in the context of PROM adaptation, researchers can contribute to the development of best practices for cross-cultural adaptation.

Despite the availability of several hand function PROMs (e.g., HAQ-DI, PRWHE and MHQ), their utility in the Indian context, particularly for Hindi speakers, is significantly hampered.^17–20 Direct translation often fails to achieve linguistic equivalence, as common terms for health and function vary significantly from Western languages. More critically, it fails to achieve conceptual equivalence, as ADLs are fundamentally culturally bound. For example, essential tasks for Hindi-speaking individuals, such as cooking Indian bread (chapatti) or using culturally specific utensils, require unique hand movements and strength not captured by existing Western-developed PROMs. Therefore, rigorous cultural adaptation is indispensable to ensure the tool’s content validity and relevance for this specific population. This issue is particularly salient as RA often affects women more, and the existing PROMs frequently neglect the functional limitations in gender-specific household and kitchen-related tasks vital in both rural and urban Indian settings.

This study will explore the landscape of PROMs commonly used in RA to assess hand involvement, highlighting the importance of cultural adaptation for any chosen PROM. Translation alone is insufficient to ensure accurate and meaningful data collection, as cultural variations in daily activities, symptom perception and communication styles necessitate a rigorous adaptation process to achieve conceptual and linguistic equivalence.¹³ This study aims to explore these adaptation needs through the perspectives of Hindi-speaking RA patients with hand involvement, utilising FGDs to ensure linguistic and cultural appropriateness.

Methodology

Study Approval and Ethical Considerations

The study protocol was reviewed and approved by the Institutional Ethics Committee of MAEER’s Physiotherapy College, Talegaon Dabhade, Pune (Approval No. EC/NEW/INST/2019/377/62) on 5 March 2021, and by the GSIPT Institutional Ethics Committee at the Government (CL and SC) Spine Institute, Civil Hospital, Ahmedabad (Approval No. GSIIESC/38/22) on 11 January 2022. The study was subsequently registered with the Clinical Trials Registry-India (CTRI/2022/07/044435).

Study Design

A qualitative study design utilising FGDs was selected to achieve the study’s objective: the cultural adaptation of PROMs for Hindi-speaking patients with RA who have hand involvement. The approach was pragmatic and inductive, guided by thematic analysis. This study adheres to the ‘Standards for Reporting Qualitative Research’ (SRQR) guidelines.^14,21

Study Population

The study population for this qualitative investigation comprised patients clinically diagnosed with RA, with hand and wrist involvement, with stages two and three, confirmed by an experienced rheumatologist according to the 2010 ACR/EULAR classification criteria. The study included both genders, with an age range of 30–50 years and a disease duration of more than 1 year. To ensure effective communication and nuanced understanding during the FGDs, all participants were fluent Hindi speakers with a minimum education level of 10th grade, and residing in either urban or rural settings.

Patients were excluded from the study if they had a diagnosis of any other known inflammatory or degenerative arthritis (other than RA) or any known neurological condition. Furthermore, patients with a diagnosed upper limb fracture or surgery performed within the past 12 months, or any known history of other upper limb musculoskeletal conditions, were also excluded to ensure that reported functional limitations were primarily attributable to their RA with hand and wrist involvement.

A total of three focus groups were conducted, each with eight patients, yielding a comprehensive exploration of perspectives from 24 individuals living with this condition. The sample size of three focus groups, totalling 24 participants, was determined based on the principle of data saturation, a common and accepted practice in qualitative research.^22,23 The number of FGDs was projected to be sufficient to capture the breadth of perspectives, recurring themes and linguistic nuances regarding hand function and cultural adaptation within the target, relatively homogenous population, without generating excessive redundant data.

Facilitator Profile

The FGDs were expertly guided by a team of three facilitators. Each facilitator was a qualified physiotherapist with substantial 10–12 years of professional experience in clinical practice. Importantly, all facilitators possessed specific expertise working within arthritis settings, providing them with a strong understanding of the challenges faced by this patient population. Three facilitators were MPT-qualified physiotherapists, all native Hindi speakers, specialising in Musculoskeletal Sciences, Community Physiotherapy and women’s Health and Cardiovascular/Respiratory, respectively. Their insights will be significantly enriched by their personal experiences, as one lives with stage two and one with stage three RA. The diverse panel includes two academicians and one clinician, ensuring a blend of theoretical knowledge and practical clinical perspective. ensuring seamless interaction and the ability to capture the subtleties of the patients’ experiences and perspectives during the discussions.

It is important to note that two of the facilitators lived with stages two and three RA, respectively. This ‘insider’ perspective was instrumental in building rapid rapport and empathy, encouraging participants to share vulnerable experiences they might have withheld from a clinician. However, we acknowledge that this shared experience introduces the potential for interpretive bias, where facilitators might unknowingly project their own difficulties onto participants. To mitigate this, the third facilitator (a clinician without RA) acted as a neutral observer and data analysis was cross-checked by an independent researcher to ensure themes were grounded strictly in participant transcripts rather than facilitator assumptions.

Data Collection

The FGDs were conducted in an environment designed to be comfortable and conducive to open and honest communication. Before commencing the discussions, the purpose of the study was clearly explained to all participants, and their written informed consent was obtained.

Data was collected using semi-structured FGDs. An interview guide was developed based on a review of existing literature on RA, hand involvement, and relevant PROMs (Supplementary file 1). The guide was structured to progressively explore participants’ experiences, moving from general difficulties to specific feedback on PROMs and their cultural adaptation. The interview guide included sections on: (a) an introduction and icebreaker, (b) exploring specific difficulties in daily life, (c) experiences with PROMs, (d) cultural adaptation of PROMs and (e) suggestions for improvement. The interviewers used probing techniques to encourage participants to provide detailed examples and clarify their responses.

The interview guide was pilot-tested with five individuals with similar characteristics to the study population to ensure clarity, relevance and comprehensiveness. Based on the pilot study feedback, two key revisions were made to enhance cultural relevance: (a) the general probe on ‘quality of life’ was refined to a more specific Hindi phrase relating to ‘impact on daily routine’, and (b) a specific discussion probe about ‘handling hot cooking utensils’ was added, as this was identified as a challenging and essential ADL in the local context. Given that the majority of our final cohort was female (87.5%), the pilot feedback emphasised that ‘housework’ needed to be more granular. Consequently, we added specific probes for thermal safety (handling hot utensils) and manual dexterity in the kitchen. This ensured the final FGDs elicited the depth of information required for true conceptual equivalence.

Revisions were made based on the pilot test feedback. Before the commencement of each FGD, the purpose of the study was explained to all participants and their written informed consent was obtained. To ensure accurate capture of the data, the discussions were audio-recorded.

Data Analysis

The analysis of the data gathered from the focus groups involved transcribing the audio recordings verbatim to create a complete written record of the discussions. Thematic analysis was then employed as the primary method for analysing this qualitative data.²⁴ This approach allowed for the systematic identification of recurring themes, patterns and key insights related to the cultural relevance and comprehensibility of the PROM’s ADL items. The process involved carefully reading the transcripts, identifying initial codes, grouping these codes into broader themes and then refining these themes to accurately represent the participants’ perspectives and experiences.

Results

The focus group consisted of 24 patients diagnosed with RA, comprising three males (12.5%) and 21 females (87.5%). The study population had a mean age of 38.63 years (SD = 7.40) and an average disease duration of 7.60 years (SD = 5.83). Regarding hand dominance, 91.66% of participants were right-handed, while 8.33% were left-handed. Regarding disease progression, 70.83% of patients were classified as stage two and 29.16% as stage three.

Thematic analysis of the focus group transcripts revealed key insights into the challenges faced by Hindi-speaking individuals with RA affecting their hands, and their perspectives on the cultural adaptation of PROM. The analysis identified several overarching themes related to the impact of RA on daily life and the perceived clarity and cultural relevance of PROM items.²⁵

Theme 1: Difficulties in Daily Life

Participants described a range of difficulties across various aspects of daily living.

Sub-theme 1.1: Self-care: A prominent theme was the challenge of performing self-care activities. Participants reported difficulties with tasks such as brushing teeth, combing hair and dressing.

Sub-theme 1.2: Household chores: The impact of hand involvement extended to household management, with participants noting limitations in cooking, cleaning and laundry.

Sub-theme 1.3: Work and school: For those engaged in work or education, challenges included difficulties with writing, typing and computer use.

Sub-theme 1.4: ADLs: More broadly, participants identified challenges with essential ADLs, including bathing, dressing and eating.

Theme 2: Experiences with Existing PROMs

Participants’ experiences with PROMs varied. Some had encountered questionnaires or surveys related to RA and its impact on daily activities, while others had not. Feedback on existing PROMs included:

Sub-theme 2.1: Language and comprehension: The language of PROMs was a significant factor. Participants discussed their comfort level in understanding and responding to questions in Hindi versus other languages.

Sub-theme 2.2: Relevance and accuracy: Participants provided insights into whether the questions in PROMs accurately captured their specific difficulties with hand involvement in daily activities. They offered examples of questions that were clear or unclear, relevant or irrelevant.

Sub-theme 2.3: Omissions: Participants identified aspects of their difficulties that they felt were not adequately addressed in existing PROMs, highlighting potential gaps in content validity.

Theme 3: Cultural and Linguistic Adaptations of PROMs for Hindi Speakers

A key focus of the discussions was on how to improve PROMs for Hindi-speaking individuals.

Sub-theme 3.1: Language and terminology: Participants suggested specific Hindi words and phrases that they felt would better reflect their experiences when describing difficulties with daily tasks (e.g., daant saaf karna, baal banana, kapde pehenna, khana banana, likhna, pakadna, uthana).

Sub-theme 3.2: Emotional and social impact: The emotional and social consequences of hand-related limitations were emphasised. Participants shared experiences of embarrassment, self-consciousness and restrictions in participating in enjoyable activities and social gatherings.

Sub-theme 3.3: Cultural considerations: Participants discussed important factors to consider when translating or adapting PROM questions for Hindi speakers, including the cultural appropriateness and clarity of language and how tasks are typically performed within the culture.

Sub-theme 3.4: Nuances of experience: Participants provided specific examples of how questions about daily activities could be phrased in Hindi to better capture the nuances of their experiences with hand involvement.

Suggestions for Improvement

Participants offered valuable suggestions for enhancing PROMs for Hindi-speaking individuals with RA. Key recommendations included:

Essential inclusions: Specific questions or topics related to daily activities and their impact that should be included in Hindi-language PROMs.

Things to avoid: Practices to avoid during the development or translation of PROMs to ensure they are respectful, easy to understand and accurately reflect participants’ lived experiences.

Discussion

The FGDs provided profound insights into the cultural and linguistic challenges inherent in adapting PROMs for Hindi-speaking individuals with RA affecting their hands. Participants consistently highlighted that direct, literal translation of PROM items from English to Hindi often failed to convey the intended meaning, thereby compromising linguistic equivalence. This was particularly evident when discussing everyday activities, where a simple word-for-word translation often missed the nuanced cultural context.^26,27 A systematic review of 39 studies found that while many functional status measures for RA have been translated, few are robustly validated across cultures. The HAQ disability index remains the most studied; however, many translated versions demonstrate poor to fair cross-cultural validity, frequently due to significant differential item functioning (DIF) across populations.²⁸

Similarly, Marwaha and Shukla recently conducted a systematic review and meta-analysis focusing specifically on the Michigan Hand Outcomes Questionnaire (MHQ), evaluating the quality of its cross-cultural adaptations and validation studies in patients with hand dysfunctions, highlighting that differences in culture can affect the validity of the PROMs.²⁹

Beyond language, achieving conceptual equivalence emerged as a critical barrier. Participants articulated that many concepts underlying ADL items in Western-developed PROMs did not directly align with or capture the complexities of daily life in India. For instance, fundamental Indian cooking practices like using a kadai (wok) or tawa (griddle), making dough, and rolling chapattis (flatbreads) require specific hand movements and strength, which are not typically represented in Western questionnaires.^30,31 Furthermore, the discussions revealed the gender-based nature of certain domestic chores in India, such as specific ways of washing clothes and utensils, which disproportionately affect women and demand particular hand dexterity.³² Similarly, the challenges of going to the office and performing specific office work, and the common practice of eating with hands, were emphasised as critical ADLs unique to the Indian context that are often overlooked in existing PROMs.^33,34 These observations underscore that questionnaires developed within different cultural frameworks may not fully capture the range of ADLs pertinent to the daily lives and experiences of Hindi-speaking RA patients.^35,36 Participants’ feedback on the clarity, relevance and comprehensibility of potential PROM items, if translated into Hindi, was invaluable. They readily identified specific words, phrases or concepts they found difficult to understand or misinterpreted, offering crucial insights into the complexities of cultural appropriateness and linguistic precision.^37,38 Importantly, patients themselves provided actionable suggestions for alternative wording or modifications, directly informing how future PROM items could be shaped to improve their cultural relevance and clarity. These discussions also illuminated specific ways in which RA impacts ADLs within this population, providing critical data for ensuring the content validity of any adapted PROM.^6,10,39

Existing literature on adapting health questionnaires for the Indian context corroborates these challenges, underscoring the critical need for meticulous translation and validation processes that go beyond linguistic equivalence. Nevertheless, successful adaptations of PROMs for Hindi-speaking populations do exist, offering valuable methodological lessons and insights that can guide the ongoing adaptation process.⁴⁰

The FGDs yielded rich narratives of the lived experiences of Hindi-speaking RA patients, profoundly illustrating the disease’s impact on their ability to perform everyday activities, especially those requiring hand function. These discussions highlighted the significant challenges faced by individuals with RA in managing various aspects of their daily lives. Participants described pervasive difficulties across categories, including: Self-care: Challenges in fundamental personal care tasks like brushing teeth, combing hair and dressing. Household Chores: Significant limitations in essential household management activities, such as cooking and cleaning, with a particular emphasis on culturally specific cooking techniques and gender-specific domestic roles. Work and school: For those engaged in professional or educational pursuits, participants reported difficulties with writing, typing, computer use and the broader spectrum of activities involved in daily office work. Essential ADLs: Broader challenges with fundamental ADLs, including bathing, dressing and, notably, the manual dexterity required for eating with hands, a prevalent cultural practice in India.^40,41

These direct accounts provided invaluable insights into the real-world consequences of RA on hand function, offering a depth of understanding that quantitative measures alone often cannot capture. Such limitations profoundly affected their independence, quality of life and overall sense of well-being.

Cultural influences were explicitly evident in both the performance and the reporting of ADLs. Discussions revealed culturally specific ways in which certain activities are typically performed by Hindi-speaking individuals in India that diverge from Western norms. For instance, activities involving squatting or sitting on the floor are common in the Indian context, imposing distinct demands on hand and overall body function. Furthermore, cultural factors can influence how patients perceive and report their difficulties, sometimes leading to an underreporting of limitations or a prioritisation of certain activities over others.⁴²

It is also crucial to acknowledge that ‘Hindi-speaking’ is not a monolith. Significant regional variations exist in dialects and daily cultural practices across North and Central India. For instance, the terminology for specific kitchen utensils or agricultural activities may vary between a speaker from rural Uttar Pradesh and one from urban Delhi. Consequently, the adaptation process must aim for ‘Standard Hindi’ (Khari Boli) to ensure broad comprehensibility, to ensure clarity for participants from different regions, and the final PROM may include local terms in addition.

Understanding these cultural nuances is paramount for developing a PROM that is not only valid but also genuinely sensitive to the cultural context. Participants’ insights into the current phrasing of PROM items, including those perceived as unclear, ambiguous or irrelevant to their experiences, are critical for informing the design of culturally appropriate and content-valid assessment tools for this population.⁴³

Participants provided vital feedback on existing PROMs, highlighting concerns regarding language comprehension, relevance and significant omissions. They articulated aspects of their daily struggles not adequately captured by current tools, underscoring gaps in content validity for the Indian context. Discussions were rich with suggestions for improving PROMs.⁴⁴ Participants proposed essential inclusions of culturally specific ADLs and the emotional/social impact of limitations, along with precise Hindi language and terminology for accurate description. They emphasised cultural considerations to reflect local practices and advised on practices to avoid during PROM development to ensure respectful and comprehensible tools. These insights are fundamental for guiding the modification and adaptation of future PROM items, informing an iterative process crucial for clarity and cultural relevance.⁴⁵

Limitations

A primary limitation of this study is its qualitative design and sample size (n = 24); while data saturation was achieved, the demographic profile of the participants was predominantly female (87.5%). Although this reflects the known higher prevalence of RA in women, it limits the transferability of findings to male patients who may prioritise different manual tasks (e.g., heavy lifting or specific occupational tools). Furthermore, while participants were recruited from both urban and rural locations, a distinct comparative analysis between these sub-groups was not conducted. Future studies should aim for a more stratified sampling strategy to explore potentially distinct functional priorities between urban office-goers and rural agricultural workers.

These FGDs represent a pivotal contribution to best practices in cross-cultural PROM adaptation. By providing a detailed qualitative exploration of patient experiences, this study fills a crucial gap in the literature. It explicitly demonstrates the indispensable role of qualitative methods in gaining an in-depth understanding of target population perspectives and identifying linguistic and cultural barriers.

This research highlights the essential role of qualitative methods in developing a culturally sensitive PROM for Hindi-speaking RA patients. The data gathered here provides a solid foundation for the next phase: generating a preliminary item pool based on unique activity limitations, such as kneading dough or eating with hands. These items will undergo cognitive interviewing to ensure the phrasing is clear and consistent. Finally, the tool will be validated through psychometric testing, including Rasch and Factor Analysis, to confirm its Construct validity and item consistency and reliability in a larger clinical cohort.

Conclusion

This study provides crucial, in-depth qualitative insights for the initial cross-cultural adaptation of PROMs for Hindi-speaking RA patients, ensuring greater content relevance and linguistic clarity for this population. These findings will directly inform the item generation and initial adaptation phase of a formal psychometric validation study for a hand-specific PROM.

Supplemental Material

Supplemental material for this article is available online.

Footnotes

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The authors received no financial support for the research, authorship and/or publication of this article.

Patient Consent

Written informed consent was obtained from all the focus group participants.

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Supplementary Material

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