|Year : 2021 | Volume
| Issue : 5 | Page : 1365-1373
|Validity and reliability of the Arabic-translated kidney disease quality of life survey among long-term dialysis patients in Saudi Arabia
Numan A Alabdan1, Abdulla A Al-Sayyari2, Fayez F AlHejaili2, Yousif A Alrajhi1, Shazia M Adnan3, Asrar S Aldelhm3, Rayan M Hakami3, Senthilvel Vasudevan3
1 Department of Pharmaceutical Care, King Abdulaziz Medical City – Ministry of National Guard Health Affair; College of Pharmacy, King Abdullah International Medical Research Center/King Saud bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
2 Department of Medicine, Division of Nephrology and Renal Transplantation, King Abdulaziz Medical City – Ministry of National Guard Health Affair; College of Medicine, King Abdullah International Medical Research, Center/King Saud bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
3 College of Pharmacy, King Abdullah International Medical Research Center/King Saud bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia
Click here for correspondence address and email
|Date of Web Publication||4-May-2022|
| Abstract|| |
One of the tools used to measure the quality of life in hemodialysis (HD) patients is the Kidney Disease Quality of Life (KDQOL) survey. The KDQOL has been through several developmental processes, with the most recent one being the KDQOL-36™. Our study evaluated the validity and reliability of the Arabic-translated KDQOL-36™ survey in Saudi chronic dialysis patients. This cross-sectional study was conducted at four HD centers in Saudi Arabia. The KDQOL-36™ survey was translated into Arabic according to the RAND Corporation’s basic guidelines for translating surveys. The validation process was achieved by assessing reliability and validity. The reliability of the translated survey was established by Cronbach’s alpha to measure internal consistency and the intra-class correlation coefficient (ICC) to measure the test–retest reliability. The validity of the translated survey was established based on content validity and convergent validity. The study included 184 patients (36–65 years; 60.9% of men). Regarding reliability, Cronbach’s alpha for the subscales ranged from 0.63 to 0.89, and ICCs ranged from 0.60 to 0.88. For content validity, an expert panel reviewed the questions in depth. In addition, we found a positive relationship between all sub- and overall health-rated scores (P <0.01). The Arabic-translated version of the KDQOL-36™ survey is reliable and valid for evaluating the quality of life in Saudi chronic dialysis patients.
|How to cite this article:|
Alabdan NA, Al-Sayyari AA, AlHejaili FF, Alrajhi YA, Adnan SM, Aldelhm AS, Hakami RM, Vasudevan S. Validity and reliability of the Arabic-translated kidney disease quality of life survey among long-term dialysis patients in Saudi Arabia. Saudi J Kidney Dis Transpl 2021;32:1365-73
|How to cite this URL:|
Alabdan NA, Al-Sayyari AA, AlHejaili FF, Alrajhi YA, Adnan SM, Aldelhm AS, Hakami RM, Vasudevan S. Validity and reliability of the Arabic-translated kidney disease quality of life survey among long-term dialysis patients in Saudi Arabia. Saudi J Kidney Dis Transpl [serial online] 2021 [cited 2022 May 25];32:1365-73. Available from: https://www.sjkdt.org/text.asp?2021/32/5/1365/344756
| Introduction|| |
Globally, chronic kidney disease (CKD) has a high prevalence of 11%–13%, which progresses to end-stage renal disease (ESRD)., An estimated 2,050 million people worldwide received dialysis as a treatment for ESRD in 2010. In Middle Eastern countries, the average prevalence of ESRD is 352 per million population (pmp). However, in the Kingdom of Saudi Arabia (KSA), the prevalence of ESRD treated by dialysis is estimated to be 548 pmp according to the Saudi Center for Organ Transplantation’s annual report in 2015. In addition, there are 16,897 patients on dialysis in 213 centers, with 15,590 patients on hemodialysis (HD) and 1307 patients on peritoneal dialysis (PD).
Dialysis patients have a higher rate of mortality and morbidity with impaired QOL compared to the general population.,, Therefore, improvements in QOL have become one of the essential goals in the treatment of patients who are on dialysis, which is considered one of the main outcome measures in the guidelines for developmental and clinical research.,, In addition, some international health agencies, such as the Centers for Medicare and Medicaid Services (CMS), dialysis network centers (e.g., Diaverum), and international programs such as the Dialysis Outcomes and Practice Patterns Study, require annual measurement reports of QOL in most dialysis patients.,, Because QOL could be affected by the immediate effect and the long-term consequences of dialysis, QOL may determine the net benefit of the treatment for ESRD. In addition, there are several opportunities for improving the QOL of dialysis patients; thus, measuring QOL in dialysis patients has several advantages, such as: (1) it can be used as a planning tool to assess the need for further treatment, (2) capturing changes in clinical status during treatment, (3) predicting the outcome of the treatment, (4) advocating a patient-centered approach, and (5) evaluating the quality of health care.,,
One of the tools used to measure QOL in HD patients is the Kidney Disease Quality of Life (KDQOL) survey. The KDQOL has been through several developmental processes, with the most recent one being the KDQOL-36™, which has several advantages such as ease of self-administration, quick to perform, and has been previously validated. Therefore, it is one of the preferred QOL measurement tools in dialysis centers and is also utilized by some international health agencies, e.g., the CMS as a clinical performance measure. Furthermore, it has been translated and validated in numerous languages such as Chinese, Thai, and Arabic.,,,, Despite the high prevalence of ESRD patients in the KSA who are on dialysis and speak Arabic, there are no QOL measurement tools for this population and no validation studies for existing tools, such as the KDQOL-36™ survey, from its original English version for Saudi chronic dialysis patients. Recently, there has been an Arabic-translated KDQOL-36™ for Sudanese patients with CKD; the authors found the translated tool valid and reliable for Sudanese CKD patients, but the sample consisted of HD patients and kidney transplant patients who had differing QOLs.
A valid Arabic version of the KDQOL-36™ for Saudi HD patients will enable health-care leaders and researchers to examine the QOL of such a population in the KSA. Therefore, our aim was to evaluate the validity and reliability of the Arabic-translated KDQOL-36™ survey for Saudi chronic dialysis patients.
| Subjects and Methods|| |
This cross-sectional study was conducted in four HD centers in the KSA. The objective of this study was to evaluate the reliability and validity of the Arabic-translated KDQOL-36™ survey in Saudi patients with ESRD on dialysis.
The inclusion criteria were adults (age >18 years) who were either on PD or in-center HD. The exclusion criteria were patients on dialysis for <3 months, patients who underwent dialysis within six weeks before the study, non-Arabic speakers, and patients with severe mental health disorders who could not complete the survey. After obtaining their written informed consent, the participants were given the Arabic-translated KDQOL-36™ survey and a sociodemographic question to complete by themselves or with assistance from either a family member or the investigators by writing the patient answers. Participation was voluntary. Each participant was seen again after two weeks to complete the same survey to determine the test–retest reliability.
The survey consisted of 36 questions that combined the Short Form-12 Health Survey (SF-12) with the three kidney disease-specific domains (KDSD), which are the burden of kidney disease, symptoms/problems of kidney disease, and effects of kidney disease. The items included in the KDQOL-36™ are as follows: items 1–12 are the SF-12, which contains six items for the physical component summary (PCS) and six items for the mental component summary (MCS); items 13–16 are the burden of kidney disease; items 17–28 are symptoms/problems of kidney disease; and items 29–36 are effects of kidney disease. The survey was translated according to the RAND Corporation basic guidelines for translating surveys (http://www.rand.org/health/ surveys_tools/about_translations.html) by two independent bilingual Saudi native Arabic speakers (Appendix 1 for the Arabic-translated KDQOL-36™ survey).
Another designed survey was created and used to extract the sociodemographic information to describe the participants. The items included questions about age, gender, marital status, educational level, employment status, past medical history, diabetes, and hypertension.
Sample size calculation
Based on previous related studies using the KDQOL-36™ in different languages, the minimum acceptable reliability intra-class correlation coefficient (ICC) was 0.70, our expected reliability (ICC) = 0.80, the level of significance (α) = 5%, statistical power (1 – β) = 80%, expected dropout rate of 10%, and our estimated minimum sample size required was 165., However, we included 184 patients in our present study to account for instances of incomplete surveys. An Excel spreadsheet was used to save the data from the completed surveys, and the data were checked before analysis for any inaccuracies. All the data were entered and compiled using Microsoft Excel 2010, and analysis was performed using IBM SPSS Statistics version 20.0 (IBM Corp., Armonk, NY, USA).
| Statistical Analysis|| |
For the sociodemographic data, descriptive statistics such as means and percentages were used. The reliability was examined in this study by Cronbach’s alpha (α) and 2-week test–retest reliability. An α ≥ 0.70 was considered acceptable., In addition, ICCs were calculated based on two-way mixed analysis of variance to examine the two-week test–retest reliability. For ICC interpretation, we considered above 0.75 as excellent reliability, between 0.40 and 0.75 as good reliability, and below 0.4 as poor reliability. The validity of the survey was established based on content validity and convergent validity. The expert panel consisted of two senior nephrologists, academic researchers, and senior clinical pharmacists specialized in nephrology to establish the content validity of the questions, review the translation equivalence in detail, and examine the appropriateness of the translated content to make sure that they are comprehensive enough and measure the study needs for Saudi patients on HD. In addition, to ensure the clarity and understanding of the translated survey, a pilot study was performed on 12 participants. To determine the convergent validity, we assessed the Pearson correlation coefficients (r) between the subscales and the hypothesized measures. The relationship between the test–retest questions and disease-specific domains with r >0.40 was considered substantial for conceptually related scales., In our present study, P <0.05 was considered statistically significant.
| Results|| |
A total of 184 participants completed translated KDQOL-36™ with a >95% completion rate, including most of the sociodemographic items except diabetes (75%) and hypertension (84%). In total, 76% of the data collected were from participants with self-administration, and the remaining were completed with family member assistance by writing patient answers. The distributions of the sociodemographic data for the participants are displayed in [Table 1]. The participants were aged between 36 and 65 years, 60.9% were male, 79.3% were single, and 21.2% of the patients had a family history of dialysis.
|Table 1: Distribution of sociodemographic variables among patients (n=184).|
Click here to view
[Table 2] displays the distribution of the descriptive statistics of the KDQOL-36™ survey. The mean scores for the KDQOL-36™ subscales ranged from 46.5 ± 19.3 for effects of KD to 67.2 ± 14.0 for the burden of KD. Regarding the distribution of the responses to the scales on the KDQOL-36™, in the domain symptom/problem list, the minimum score was 9.0. In the domain burden of KD, the score was 31.3, and the minimum score of the effect of KD was 3.1.
|Table 2: Distribution of the descriptive statistics of the KDQOL-36™ survey.|
Click here to view
[Table 3] displays the reliability tests examined in this study, which are the Cronbach’s alpha and two-week test–retest reliability. In our study, regarding internal consistency, Cronbach’s alpha coefficient for the subscales was between 0.63 and 0.89. For test–retest reliability, ICCs ranged between 0.60 and 0.88.
|Table 3: Reliability and intra-class correlation coefficient values of the KDQOL-36™ subscales.|
Click here to view
[Table 4] displays the correlation between the initial test and retest among the patients. All correlation values showed a positive correlation between the test and retest scores, with a statistical significance of P <0.05. In the first symptom/problem list (out of 12 questions), question no. 8H (lack of appetite?) showed a very high correlation value of 0.618 (P <0.001), while question 5E (dry skin?) had a very low correlation value of 0.287 (P <0.001). In the second domain, the burden of KD (out of four questions), question no. 16D (I feel like a burden on my family?) showed a very high correlation value of 0.678 (P <0.001), while question 14B (too much of my time is spent dealing with my kidney disease?) had a very low correlation value of 0.427 (P <0.001). In the third domain, the effects of KD (out of eight questions), question no. 22F (stress or worries caused by kidney disease?) showed a very high correlation value of 0.586 (P <0.001), while question 18B (dietary restriction?) had a very low correlation value of 0.433 (P <0.001). In the fourth domain, PCS (out of six questions), question no. 27C (climbing several flights of stairs?) had a very high correlation value of 0.615 (P <0.001), while questions 25A (general health rating..?) and 26B (moderate activities..?) had a very low correlation value of 0.512 (P <0.001). In the fifth domain, MCS (out of six questions), question no. 33C (have you felt calm and peaceful?) showed a very high correlation value of 0.523 (P <0.001), while question 31A (accomplished less than you would like?) had a very low correlation value of 0.406 (P <0.001).
[Table 5] displays the convergent validity. It showed positive relationships between all subscales and overall health rating scores (P <0.01). Moreover, all KDSDs had significant relationships with two generic component summaries, with coefficients lying between 0.233 and 0.759. A solid relationship appeared between the burden of KD and the overall health rating score. There was no relationship between PCS and MCS.
|Table 5: Correlations between the domains of the KDQOL-36™ with the overall health rating.|
Click here to view
| Discussion|| |
This is the foremost study conducted in the KSA to assess the validity and reliability of the Arabic-translated KDQOL-36™ survey. Our results show that the Arabic version of the KDQOL-36™ survey is culturally appropriate for use in Saudi chronic dialysis patients.
There are several differences between this study and the Arabic-translated KDQOL-36™ for Sudanese CKD patients; the patient population in this study focused on Saudi HD patients, while the other study was for Sudanese HD patients and kidney transplant patients. The adapted translation for this study was different to make the Arabic-translated KDQOL-36™ more understandable for Saudi HD patients. Furthermore, the reliability testing in the Sudanese study was not consistent; for estimating ICC, they chose only 10 bilingual CKD patients, with it being unknown whether they were transplant or HD patients. In addition, when estimating the internal reliability, both transplanted and HD patients were calculated together. On the other hand, our study included only HD patients, and all patients were included in the reliability testing. Sociodemographic data were not reported in the previous study, whereas we used Pearson correlation coefficients in the present study to assess the sociodemographic data.
In our study, the ICCs for test–retest reliability ranged from good (0.60) for the symptom/problem list to excellent (0.88) for the MCS, which determined the strength of the scale over time. In addition, the results of the internal reliability showed a good level of reliability with Cronbach’s alpha >0.7 for most domains, except for the symptom/problem list, which was 0.63 but is considered acceptable. Overall, acceptable levels of reliability were found for each item from each subscale of our survey.
Regarding convergent validity, a correlation coefficient >0.4 is considered acceptable. In our study, we found a strong positive correlation between all subscale scores and the overall health rating score (P <0.01). The convergent validity of the Arabic version of KDQOL-36™ was strengthened by the supposition that the people stipulated a higher overall health score with an improved QOL. This high health score emulates the patient’s opinion and indicates personal insight into one’s health condition.
This study showed a significant correlation between overall health and the subscales for symptoms and problems, PCS and MCS, and burden of KD (P <0.0001). From the results, it is evident that the overall physical health rating and KDQOL-36™ are related to each other. Previous studies had similar results, such as the Chinese, Greek, Singaporean, and Korean versions. In the general adult population, the overall health rating mainly suggests the physical aspect of health.
We could not find a significant correlation between the PCS and MCS domains. A possible reason for this is that the patients included in our study varied and experienced dissimilar stressors. For patients who had not started dialysis treatment yet, visiting the HD center and the thought of being dependent on dialysis may trigger physiological stress. We found the strongest correlation between the burden of KD and the overall health rating score. On the other hand, another study reported a moderate correlation.
The construct validity of the KDQOL-SF version was also supported by the findings of our study. We observed a strong correlation coefficient between all KD-specific domains with two generic component summaries of the KDQOL-36™. Similar findings were corroborated by previous studies.,
This study has several strengths. This study was conducted using only patients with chronic dialysis to ensure homogeneity of the sample. In addition, the study was conducted in four HD centers in the KSA from two different cities, and only Saudi citizens were allowed to participate, which will generalize the findings among Saudi dialysis patients. However, several limitations of the current study need to be recognized. Twenty-four percent of the surveys were completed by participants with the help of family members, which may affect the results; however, the help was only in the form of writing the participant answers. In addition, elderly patients (age >65 years) accounted for only 21%, which may affect the generalizability of the findings in this age population; however, this represents the percentage of the population who are elderly in the KSA. Other Arabic speakers were not included in this study, and it was not designed to test other Arabic speakers.
Based on our study findings, we can conclude that the Arabic-translated version of the KDQOL-36™ survey is a reasonable and authenticated measure of QOL. It can be used to compute the QOL in relation to patient health in the Saudi dialysis population. However, future research is needed to confirm the results with different validity/reliability tests, patient populations (e.g., CKD with different stages), and different Arab nations.
| Acknowledgment|| |
We would like to thank Editage (www.editage.com) for English language editing.
| Ethical Approval|| |
The IRB Committee of King Abdullah International Medical Research Center approved this study (approval number: SP17/368/R).
Conflict of interest: None declared.
| References|| |
Hill NR, Fatoba ST, Oke JL, et al. Global prevalence of chronic kidney disease – A systematic review and meta-analysis. PLoS One 2016;11:e0158765.
Fogo AB. Mechanisms of progression of chronic kidney disease. Pediatr Nephrol 2007; 22:2011-22.
Liyanage T, Ninomiya T, Jha V, et al. Worldwide access to treatment for end-stage kidney disease: A systematic review. Lancet 2015;385:1975-82.
Abboud O. Incidence, prevalence, and treatment of end-stage renal disease in the Middle East. Ethn Dis 2006;16:S2-4.
Al Wakeel JS, Mitwalli AH, Al Mohaya S, et al. Morbidity and mortality in ESRD patients on dialysis. Saudi J Kidney Dis Transpl 2002; 13:473-7.
Joshi U, Subedi R, Poudel P, Ghimire PR, Panta S, Sigdel MR. Assessment of quality of life in patients undergoing hemodialysis using WHOQOL-BREF questionnaire: A multicenter study. Int J Nephrol Renovasc Dis 2017;10: 195-203.
Valderrábano F, Jofre R, López-Gómez JM. Quality of life in end-stage renal disease patients. Am J Kidney Dis 2001;38:443-64.
Jhamb M, Tamura MK, Gassman J, et al. Design and rationale of health-related quality of life and patient-reported outcomes assessment in the Frequent Hemodialysis Network trials. Blood Purif 2011;31:151-8.
Levin A, Stevens PE, Bilous RW, et al. Kidney disease: Improving Global Outcomes (KDIGO) CKD Work Group. KDIGO 2012 Clinical Practice Guideline for the evaluation and management of chronic kidney disease. Kidney Inter Suppl 2013;3:1-150.
Testa MA, Simonson DC. Assessment of quality-of-life outcomes. N Engl J Med 1996; 334:835-40.
Jaar BG, Chang A, Plantinga L. Can we improve quality of life of patients on dialysis? Clin J Am Soc Nephrol 2013;8:1-4.
O’Hare AM, Armistead N, Schrag WL, Diamond L, Moss AH. Patient-centered care: An opportunity to accomplish the “Three Aims” of the National Quality Strategy in the Medicare ESRD program. Clin J Am Soc Nephrol 2014;9:2189-94.
Tao X, Chow SK, Wong FK. Determining the validity and reliability of the Chinese version of the Kidney Disease Quality of Life Questionnaire (KDQOL-36™). BMC Nephrol 2014;15:115.
Thaweethamcharoen T, Srimongkol W, Noparatayaporn P, Jariyayothin P, Sukthinthai N, Aiyasanon N, et al. Validity and reliability of KDQOL-36 in Thai kidney disease patient. Value Health Reg Issues 2013;2:98-102.
Elamin S, E Elbasher AH, E Ali SE, Abu-Aisha H. Arabic translation, adaptation, and validation of the kidney disease quality of life short-form 36. Saudi J Kidney Dis Transpl 2019;30:1322-32.
] [Full text]
Ghasemi A, Zahediasl S. Normality tests for statistical analysis: A guide for non-statisticians. Int J Endocrinol Metab 2012;10:486-9.
Bland JM, Altman DG. Cronbach’s alpha. BMJ 1997;314:572.
Kaasa S, Bjordal K, Aaronson N, et al. The EORTC core quality of life questionnaire (QLQ-C30): Validity and reliability when analysed with patients treated with palliative radiotherapy. Eur J Cancer 1995;31A:2260-3.
Lim LL, Seubsman SA, Sleigh A. Thai SF-36 health survey: Tests of data quality, scaling assumptions, reliability and validity in healthy men and women. Health Qual Life Outcomes 2008;6:52.
DeVon HA, Block ME, Moyle-Wright P, et al. A psychometric toolbox for testing validity and reliability. J Nurs Scholarsh 2007;39:155-64.
Barotfi S, Molnar MZ, Almasi C, et al. Validation of the Kidney Disease Quality of Life-Short Form questionnaire in kidney transplant patients. J Psychosom Res 2006;60: 495-504.
Kontodimopoulos N, Niakas D. Determining the basic psychometric properties of the Greek KDQOL-SF. Qual Life Res 2005;14:1967-75.
Cheung YB, Seow YY, Qu LM, Yee AC. Measurement properties of the Chinese Version of the Kidney Disease Quality of Life-Short Form (KDQOL-SF™) in end-stage renal disease patients with poor prognosis in Singapore. J Pain Symptom Manage 2012;44: 923-32.
Park HJ, Kim S, Yong JS, et al. Reliability and validity of the Korean version of Kidney Disease Quality of Life instrument (KDQOL-SF). Tohoku J Exp Med 2007;211:321-9.
Onadja Y, Bignami S, Rossier C, Zunzunegui MV. The components of self-rated health among adults in Ouagadougou, Burkina Faso. Popul Health Metr 2013;11:15.
Gyamlani G, Basu A, Geraci S, et al. Depression, screening and quality of life in chronic kidney disease. Am J Med Sci 2011; 342:186-91.
Chow SK, Tam BM. Is the kidney disease quality of life-36 (KDQOL-36) a valid instrument for Chinese dialysis patients? BMC Nephrol 2014;15:199.
Abd ElHafeez S, Sallam SA, Gad ZM, et al. Cultural adaptation and validation of the “kidney disease and quality of life-short form (KDQOL-SF) version 1.3” questionnaire in Egypt. BMC Nephrol 2012;13:170.
Numan A Alabdan
Department of Pharmaceutical Care, King Abdulaziz Medical City – Ministry of National Guard Health Affair, P. O. Box 22490, Riyadh 11426
Source of Support: None, Conflict of Interest: None
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]
| Article Access Statistics|
| Viewed||170 |
| Printed||0 |
| Emailed||0 |
| PDF Downloaded||36 |
| Comments ||[Add] |