Kannada Translation and Validation of the ESAS-r Renal for Symptom Burden Survey in Patients with End-Stage Kidney Disease

INTRODUCTION

According to the 2019 Global Kidney Health Atlas survey, the global average prevalence of new end-stage kidney disease (ESKD) is estimated at 144 per million.^[1,2] The chronic kidney disease (CKD) strategy has often focused on preventing and managing CKD risk factors such as diabetes mellitus, hypertension, obesity and cardiovascular disease.^[3-5] Besides, the increase in ESKD prevalence has led to costs associated with renal replacement therapy.^[2] In the Indian context, there are limited data on ESKD prevalence and incidence, and often patients find it challenging to access renal replacement therapies.^[6,7] An Indian CKD study showed that only 32.1% of participants had health insurance. Moreover, most of the patients (83%) had to pay by pocket, and 10.6% could not afford any CKD treatment due to a lack of finances.^[8]

Advanced renal failure patients have symptoms that might diminish their quality of life (QOL), functional state, health perceptions and emotional well-being.^[9-11] Distress associated with symptoms is known to negatively impact the QOL in patients with kidney disease.^[10,12,13] Renal teams often fail to recognise that this contributes to needless health-related suffering.^[14,15]

Symptom evaluation and healthcare outcomes in patients with ESKD could be standardised using validated tools like Edmonton Symptom Assessment System Revised (ESAS-r).^[16] However, such measures are unavailable for use in the native Kannada-speaking population with ESKD.

The ESAS-r: Renal is a simple and widely used tool for assessing physical and psychological symptom distress that has been validated in ESKD patients.^[17] The ESAS-r: Renal consists of eleven item visual analogue scales for pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath, itching and problems in sleeping with a superimposed 0–10 scale.^[18] The scale for each symptom is annotated by the words ‘No’ and ‘Severe’ at 0 and 10, respectively.^[18,19]

In Karnataka, most people speak Kannada, and ESKD patients from rural and remote areas find it challenging to comprehend a self-administered tool in English. Therefore, we did this study to assess the validity and reliability of the ESAS-r: Renal questionnaire of the Kannada version in the ESKD population.

MATERIAL AND METHODS

The study was conducted between September 2021 to February 2022 in the haemodialysis unit and the renal outpatients of an academic medical centre in Southern India. The study was approved by Kasturba Medical College and Kasturba Hospital’s Institutional Ethics Committee (IEC-214/2021). The permission for use and translation of the ESAS-r: Renal tool was obtained from the authors of the original English version.^[18]

RESULTS

Translated ESAS-r: Renal Kannada version was found to be acceptable and correlated well with the English version. The CVR of ESAS-r: Renal questionnaires was 1, indicating that panelists perceived each question to be appropriate and relevant.

During the pilot phase, the participants did not report any significant challenges concerning the questionnaire’s simplicity, readability and comprehension. The piloted ESAS-r: Renal Kannada version was administered to 45 ESKD patients from dialysis and nephrology outpatient clinics. The demographic details of ESKD patients are mentioned in [Table 1].

The ESKD patients reported a mean of 2.42 ± 1.59 symptoms. Tiredness, loss of well-being, pain and sleep disturbances were the commonly reported symptoms, as shown in [Table 2].

The reliability of the Kannada version of the ESAS-r: Renal was good, with Cronbach’s α of 0.785. The description of symptom burden Mean ± Standard deviation (SD) and Cronbach’s α values of ESAS-r Kannada version is shown in [Table 3].

Test-retest value of ESAS-r: Renal Kannada version intraclass correlation coefficient was 0.948, and the 95% confidence interval was 0.905–0.97, as summarised in [Table 4].

The final Kannada version of the ESAS- r: Renal, which was used among ESKD patients, is shown in [Figure 1].

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Figure 1:

Kannada translation of Edmonton symptom assessment system revised renal.

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DISCUSSION

Kannada version of ESAS-r Renal was found to be feasible and well accepted. Over the many years, ESAS has evolved as the most commonly used patient-reported outcome measure for distressing symptom documentation in chronic care.^[27] ESAS-r has been used in other Indian languages but mostly in cancer patients.^[28] This is the only study translating and validating the renal version of ESAS-r Renal in patients with ESKD in India. To the best of our knowledge, this is no other validated tools available in native Kannada to assess symptom burden in patients with ESKD. Like other studies,^[29] our patients found the translated tool simple to use, easy to understand and feasible to implement.

This study reported that the Kannada version of the ESAS-r: Renal had good face validity, internal consistency and acceptability. The results were comparable to the studies conducted on validity and reliability in other countries.^{[19,22,30,31]} On test-retest validity of ESAS-r Renal, the overall intraclass correlation coefficient showed good agreement for all items. However, a moderate agreement was seen for fatigue, dyspnoea and loss of well-being. Similar results were seen in other translation-related studies of ESAS-r.^[25,26,29] The symptom pattern and burden reported by patients in this study match patterns reported in other studies using other QOL tools in ESKD patients.^[13] Interestingly, similar symptom patterns were reported in other Indian studies where ESAS-r was used on advanced cancer patients.^[32]

Patients’ reluctance to express their symptoms and clinicians’ inability to explore it is a significant barrier to patient management in an ESKD setting.^[14] Applying simple and validated symptom assessment tools in the local language in the clinic/dialysis waiting area can help the renal supportive care team provide better care.

Our study has a few limitations. The translated tool was not compared with a standard tool from India as no previously validated tool was available for comparison. However, we sought expert opinion from the palliative care and nephrology team to ensure that the translated tool is comprehensive and applicable. Another limitation was a long gap between test-retest evaluations, which could have led to variability in test-retest reliability.

CONCLUSION

ESAS-r: Renal Kannada version is reliable and valid for identifying the symptom burden in Kannada-speaking ESKD individuals. The Kannada version of the ESAS-r: Renal may be a useful clinical tool in integrated renal supportive care services for ESKD patients in our population.