Assessment of Quality of Life among End-Stage Renal Disease Patients Undergoing Maintenance Hemodialysis

INTRODUCTION

Chronic kidney disease (CKD) has become one of the major medical problems worldwide. According to a study conducted in the 2015 Global Burden of Disease (GBD), CKD ranked the 17^th among causes of death globally (age-standardized annual death rate of 192 deaths per 100,000 population). In India, the GBD 2015 ranks CKD as the eighth leading cause of death.[1]

Renal failure is a chronic disease that can seriously affect quality of life (QOL) and specifically their social, financial, and psychological well-being.[234] QOL is defined as “An individual perception of their position in life in the context of culture and value system where they live, and in relation to their goals, expectations, standards, and concerns.” Health-Related QOL (HRQOL) represents the physical, psychological, and social domains of health that are influenced by a person's experience, beliefs, expectations, and perceptions.[5] In this scenario, QOL has become an important indicator of health care, patient experience, and measure of effectiveness in various chronic diseases. The assessment of QOL becomes mandatory as an outcome measure in the evaluation of adverse events and treatment effectiveness in various diseases conditions such as end-stage renal disease (ESRD), cardiovascular disease, malignancy, chronic obstructive pulmonary disease, and human immunodeficiency virus infection.[6] Patients with CKD may experience a negative impact on their QOL, which comes from the anxiety that can appear before and during the treatment.[7] There are various renal replacement therapies available that result in longer survival in Stage 5 CKD patients. Hemodialysis therapy is time-intensive, expensive, and requires fluid and dietary restrictions. Long-term dialysis therapy itself often results in loss of freedom; dependence on caregivers; disruption of marital, family, and social life; and reduced or loss of financial income. Due to these reasons, the physical, psychological, socioeconomic, and environmental aspects of life are negatively affected, leading to compromised QOL.[8] QOL in CKD patients is a unique, personal, nontransferable, and complex concept that is linked to human adaptive mechanisms, and it requires various factors related to psychological, environmental, social, and personal relationship dimensions.[9]

The aim of this study is to explore QOL of patients with Stage 5 CKD undergoing maintenance hemodialysis (MHD) using the WHOQOLBREF questionnaire.

MATERIALS AND METHODS

This is a cross-sectional observational study conducted among patients with CKD undergoing MHD at 11 major centers in India. Data were collected from these hospitals for a total duration of 6 months. Ethical approval for this study was obtained from the Institutional Review Board of Kannur Government Medical College, Kerala (ref no: A1/1839/2017APSC/IEC-07/2017). Patients with ESRD on MHD were included in this study. Demographic data were collected using a predesigned questionnaire. QOL index was measured using 26 items in the WHO-QOL BREF questionnaire. We included patients who had been on regular hemodialysis for at least 3 months.

The following criteria were used to exclude patients after the initial screening:

• Patients undergoing peritoneal dialysis

• Incompletely filled questionnaire.

The WHO-BREF questionnaire was translated into local language. Educated participants were encouraged to fill the questionnaire by themselves; however, for patients who were illiterate, questions were read out clearly by an investigator and responses were noted from a primary caretaker if applicable.

Sociodemographic factors such as age, gender, marital status, education, employment, and number of dialysis per week were collected using a structured questionnaire, and QOL was measured using the WHOQOL-BREF questionnaire. After explaining the purpose of this study, 530 patients were evaluated initially, of which 503 met the inclusion criteria and 27 were excluded due to incomplete responses.

The WHOQOL-BREF is a questionnaire that relies on assumption that the QOL is a subjective and multidimensional construct based on individual perception of QOL and is composed of positive and negative dimensions.[10] The WHOQOL-BREF contains 26 questions and is cross-culturally adapted and validated in Malayalam language. The questions are relating to the physical health, psychological, social, and environmental status of patients. Items G1 and G4 assess individual overall perception of QOL and health, respectively, and the remaining 24 questions are divided into four domains. Each item is rated by a 5-point Likert scale. Out of the four domains, one is physical health and others are psychological, social, and environmental domains. All domains have different raw score ranges; for uniformity, all raw scores were transformed to 0–100 scale using transformation formula.[11] A higher score indicates a better QOL. Descriptive statistics were used to analyze the mean domain scores and are presented as mean ± standard deviation (SD). Pearson's correlation coefficient was used to assess the inter-domain correlation between various demographic factors and domain scores.

RESULTS

DISCUSSION

CKD patients undergoing MHD have to cope with the fact of having an incurable disease that requires painful treatment and causes limitations to life. They often end up having poor QOL. In this study, it was noticed that the best QOL domain was social relationship, with an average of 51.65 ± 21.03, followed by environmental (46.91 ± 19.29) and psychological (41.07 ± 20.30). It was found that psychological was the second most affected domain. Dialysis treatment is a repetitive and exhausting routine for CKD patients were as changes in lifestyle and occupational inactivity causes mood swings and emotional stress that affect mental and physical health of patients. Other factors such as dependence and restrictions imposed by treatment, fear of death, and alterations in bodily appearance may add a negative result in this scenario. The domain affected most adversely was physical health. The low scores clearly demonstrate that daily activities such as sleep and capacity to work were disrupted in ESRD patients due to physical pain and dependence on medical treatment.

Overall QOL is correlated with age. A common trend exists within all the domains and age ≥60, i.e., a negative correlation can be observed with respect to older age and physical, psychological, social, and environmental domains. This decline in scores for older age can be attributed to the fact that with increasing age, there is deterioration in physical status of the patient, i.e., energy, work capacity, and quality of sleep, and with increasing age, there is a decrease in scores of psychological domain. This may be due to various comorbidities, poor support from the family and society, financial burden which in turn drives them up in a state of solitude, blue mood, anxiety, and depression. Our findings also indicate that older patients had significantly lower QOL scores than younger patients in the social domain. This may be due to lack of solid personal relationships and dissatisfied sexual life. The environmental domain assesses the influence of factors such as environment, financial resources, health-related information, transport facilities, and insurance schemes. The decline in scores may be due to unhealthy living conditions, lack of adequate transport facilities, and absence of social support groups for the elderly unlike in developed countries. Although a number of government schemes exist (like Karunya, employees' state insurance), most of the patients are unable to avail these because they do not fulfill the inclusion criteria. Similarly, Mandoorah et al.[12] showed that patients older than 60 years had a worst report of QOL. In contrary, the study done by Joshi et al.[13] revealed that older patients had better QOL than younger patients in social domain.

This study claimed that a better educational background positively impacted the patient's QOL. They are directly proportional. The level of education has been identified as a predictor of good health because more the academic qualifications, greater the chances of being employed and hence a reliable income and better socioeconomic conditions. Literate patients have a better understanding of the disease and awareness regarding its treatment and lifestyle modifications. Hence, in this study, higher scores in all the domains are observed in participants who have received tertiary education and in those who are employed. In this study, only 11.13% of the patients were employed and the remaining were not working either due to being retired or unable to work due to physical limitations. This is in line with the study conducted by Theofilou[2] and Gerasimoula et al.[14] Whereas, the study by Joshi et al.[13] did not come across any significant association between QOL and educational status.

While we expected gender to affect QOL in CKD patients, we did not come across any significant results on comparing scores in both the sexes. In contrast, the study conducted by Sathvik et al.[8] revealed that females have a lower score in psychological and environmental domains compared to males.

Marital status significantly affects QOL in all domains. Unmarried people had better scores, whereas married people scored lower. This may be because married people have to run the family which increases financial stress and dependence and finally affects QOL. In India, due to extended family structure, even unmarried people get adequate emotional and financial support from their families. While many previous studies have indicated that married people have higher QOL,[2] a study carried out in Nepal[13] is in line with our findings.

Although we expected the QOL to improve in patients undergoing thrice weekly dialysis, it was found to decline. This may be owing to the fact that as the number of dialysis increases, the patient has to spare more time and resources. Furthermore, since many of them stay far off from the dialysis centers, they have to spend extra money to meet their travel expenses and also the medication costs. Apart from this, the surplus charges also include the cost of replacing the dialyzer after the definite time interval.

CONCLUSION

The evaluation of the QOL in CKD patients undergoing hemodialysis showed that it was relatively compromised. Because the patients had a chronic, progressive irreversible disease, the most affected was physical domain. Age, education, employment, and marital status were found to affect one or more domains of QOL. Age and education are significant independent variables; as the age increases, QOL decreases, and higher the education better the QOL. It was found that studies on QOL offer strategies to health workers that allow them to measure physical, psychological, and environmental necessities in order to meet the real needs of patients undergoing renal therapy. To our knowledge, no such study has been conducted in Kerala, and this study provides an insight on how dialysis affects various dimensions of life.