Introduction

Patient satisfaction has been increasingly recognized as an effective yardstick for assessing quality of health care systems.1 Patient-reported experience measures (PREMs) have garnered significant attention in recent years due to growing emphasis on patient-centric approaches.12 Various PREMs have been designed to assess satisfaction in patients under oncologic care. The OUTPATSAT-35 is one such validated questionnaire (adapted from INPATSAT-32 for inpatients) for patients undergoing ambulatory oncologic treatment3 such as radiotherapy (RT) or chemotherapy (CT), which was recently translated4 and validated5 in two Indian vernacular languages (Hindi and Marathi) in a low-middle income country (LMIC) setting. Given remarkably similar domains and significantly overlapping items between INPATSAT-32 and OUTPATSAT-35 (RT and CT), the European Organization for Research and Treatment of Cancer (EORTC) has now developed a 33-item satisfaction with cancer care core questionnaire (PATSAT-C33) and a 7-item complementary module (OUT-PATSAT7) specific for outpatient care setting6 and have subsequently been applied in patients from 11 countries (in 10 languages).7 The EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires are currently undergoing phase IV cross-cultural validation and psychometric assessment in various geo-ethnic populations across the globe.

Aim

This study was aimed at pilot testing and translation of the English version of EORTC PATSAT-C33 and OUT-PATSAT7 into two Indian vernacular languages (Hindi and Marathi).

Material and Methods

Methodology

The study methodology is briefly described and summarized in Fig. 1. The index English version of the questionnaires (PATSAT-C33 and OUT-PATSAT7) was administered to 20 patients with basic proficiency in English within 3 days (± ) of completion of their planned RT regimen. After filling the questionnaires, an interview was conducted using a semistructured format to assess appropriateness of the items in the questionnaire in the tested population, which was documented patient-wise and then reorganized under the same structured format but for each item (item-wise). After pilot testing, translation of the questionnaire was done according to standardized and validated EORTC methodology for such translations (Fig. 1).8 Reconciliation was done by a third linguistic expert after merging information from both forward-translated versions. The intermediate version of either language was then back-translated and compared with the original questionnaire for harmonization. The intermediate versions were independently proofread by the EORTC translation group who provided suggestions for further minor modifications (modified intermediate version). This was subsequently administered to 20 patients each (basic proficiency in respective vernacular language) for pilot testing. As per standard methodology, all patients underwent semistructured interviews as mentioned above. Patient concerns were addressed and suggestions if any were incorporated to create the final translated version of the questionnaire in the respective vernacular language.

Close

Fig. 1: Flowchart describing standard European Organization for Research and Treatment of Cancer (EORTC) translation methodology.

Export to PPT

Results

A total of 60 patients who filled these questionnaires (20 in each language—English, Hindi, and Marathi) constitute the present study cohort. Sociodemographic factors, clinical parameters, and treatment characteristics of included patients are briefly summarized in Table 1. None of the 20 patients included in pilot testing of the English version of PATSAT-C33 and OUT-PATSAT7 questionnaires reported any problems in understanding, difficult/confusing words, or upsetting questions during semistructured interviews. Translation of the questionnaires was done into the two Indian vernacular languages, Hindi and Marathi (Fig. 1), that are commonly spoken in Western India. The intermediate versions in both vernacular languages were proofread by the EORTC translation group and their suggestions incorporated in the modified intermediate versions which was used for pilot testing in 20 patients each with basic proficiency in Hindi and Marathi languages in conjunction with language-appropriate version of EORTC QLQ-C30. Some translated words (in Hindi and/or Marathi) in the PATSAT-C33 and OUT-PATSAT7 questionnaires were deemed difficult to understand by patients during semistructured interviews. These were related to vernacular translation of few specific words (privacy, attention, consultation, provision, and physiotherapist) which could not have been simplified further without losing their essence and meaning. None of the patients suggested further changes (corrections/modifications) to the content or wording, hence, the modified intermediate versions were adopted as the final translated questionnaires (online Supplementary Files S2 and S3, respectively) in both Hindi and Marathi languages, respectively.

All patients (N = 60) responded to all the items of EORTC PATSAT-C33 and OUT-PATSAT7 as well as QLQ-C30 questionnaires resulting in full compliance with zero data attrition. Summary satisfaction scores in terms of mean scores with standard deviation (SD) and median scores (range) for various scales of all tested domains in PATSAT-C33 and OUT-PATSAT7 are reported in Table 2. Satisfaction scores were generally high for all scales with highest mean scores (4.1) obtained for Q32 (environment) and Q33 (general satisfaction) while lowest mean score (2.9) seen for waiting time for medical appointment (Q36). The mean (± SD) and median (range) scores of all individual questions of QLQ-C30 for the entire study cohort (N = 60) are summarized in Table 3. Higher scores for functional and global health status scales reflect healthy level of living, while lower scores for symptom scale reflects better symptom control. There were no significant correlations between QLQ-C30 domains and PATSAT-C33/OUT-PATSAT7 scales indicating that they assess different aspects of patient-reported measures. While QLQ-C30 measures specific aspects of cancer symptoms and treatment outcomes from the patient's perspective (patient-reported outcome measures), PATSAT questionnaires measure patient's view of health service experiences (PREM) allowing direct feedback to health care administrators (planners and policy makers) to improve health care system.

Discussion

Patient satisfaction, a key indicator of health care quality, requires comprehensive yet dedicated tools to assess patient experience through various phases of care across diverse health care settings. Although several PREMs have been designed, developed, and described in the indexed medical literature, only a few pertain to oncologic care and even fewer have been translated and validated in Indian vernacular languages.451011121314 One such questionnaire (OUTPATSAT-35RT) that assesses patient satisfaction on ambulatory RT was recently translated and validated in two Indian vernacular languages.45 However, given that cancer care spans across different settings including inpatient care and outpatient services, it was deemed necessary to revise the existing questionnaires to comprehensively assess patients' perceived quality of care across cancer care settings to create an overarching cancer care questionnaire. Brédart et al reported the initial steps taken to produce a satisfaction with cancer care core questionnaire (applicable for inpatient and outpatient settings) and a complementary cancer outpatient satisfaction with care module, which later resulted in the EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires, respectively.6 The latter module was intended to cover outpatient satisfaction with daycare surgery, ambulatory RT, outpatient CT, and home-based cancer therapy. A preliminary list of cancer issues to complement IN-PATSAT32 and specifically address outpatient setting was prepared after reviewing multiple questionnaires in literature.31516 After several rounds of revision to eliminate redundancy, ensure clarity, and define cancer care issues with approximately the same level of abstraction and specificity, a consolidated list of 88 issues was presented to patients and health care providers for rating the appropriateness of items using semistructured interviews. Items were deleted depending on reported low relevance and low priority. The remaining 57 items were then operationalized as questionnaire items into preliminary questionnaires (cancer core and outpatient modules). In the next developmental phase, the preliminary satisfaction questionnaires were translated into 10 languages and pretested in 11 countries in order to identify/solve potential problems in its administration and to identify redundant or missing issues.7 This led to the retention of 40 items which was operationalized into EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires after testing of scale properties. A large-scale phase IV cross-cultural validation study is now underway globally to establish psychometric properties of the questionnaire during which these questionnaires are being administered to four main groups of patients based on the cancer care settings at three assessment times. Cross-cultural applicability and acceptability, reliability, validity, responsiveness to change, and cross-cultural invariance of psychometric properties of these questionnaires will be assessed and reported in due course.

Compared to other satisfaction tools, PATSAT-C33 and OUT-PATSAT7 questionnaires are considered to be much more inclusive and comprehensive in context with care settings.6 The present study pilot tested and translated the English version of EORTC PATSAT-C33 and OUT-PATSAT7 into two Indian vernacular languages (Hindi and Marathi), which are commonly spoken in Western India. There was a general trend of high satisfaction scores which can be somewhat misleading due to relatively small sample size and potential bias based on patient's perception of likely negative impact on further treatment in case of reporting low levels of satisfaction. Lowest satisfaction scores pertained to questions concerning waiting times—for appointments (mean score 2.9) and for daily treatments (mean score 3.1). This is understandable as the study was conducted in a busy RT department with high footfalls that poses major challenges in providing early appointments and efficient scheduling of visits during RT on a daily basis.

Conclusion

This study successfully completed pilot testing and translation of EORTC PATSAT-C33 and OUT-PATSAT7 questionnaires into two Indian vernacular languages (Hindi and Marathi) using standardized methodology. Psychometric properties of the questionnaire are presently being assessed for validation testing in a larger Indian cohort.