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|Year : 2012 | Volume
| Issue : 2 | Page : 103-108
Health-related quality of life and existential concerns among patients with end-stage renal disease
Samir Bele1, Trupti N Bodhare1, Nikhil Mudgalkar2, Abhay Saraf3, Sameer Valsangkar1
1 Department of Community Medicine, Prathima Institute of Medical Sciences, Karimnagar, Andhra Pradesh, India
2 Department of Anaesthesia, Prathima Institute of Medical Sciences, Karimnagar, Andhra Pradesh, India
3 Public Health Foundation of India, New Delhi, India
|Date of Web Publication||8-Sep-2012|
Department of Community Medicine, Prathima Institute of Medical Sciences, Karimnagar, Andhra Pradesh
Source of Support: None, Conflict of Interest: None
Background : Health-Related Quality Of Life (HRQOL) among patients with End-Stage Renal Disease (ESRD) is significantly impacted by virtue of varied disease or treatment-related factors, and its evaluation along with existential concerns is required for providing comprehensive care to the patient.
Aim : The aim of this study was to describe the various dimensions of HRQOL and existential concerns and to examine the relationship between the two among patients with ESRD.
Materials and Methods : A cross-sectional descriptive study was conducted among 54 patients with ESRD undergoing maintenance hemodialysis in a teaching hospital. A semi-structured questionnaire was used to assess socio-demographic characteristics and existential concerns of the respondents. The HRQOL was evaluated using a standardized scale of Kidney Disease Quality of Life-Short Form (KDQOL-SF™) questionnaire. Data were presented as frequencies, mean ± Standard Deviation (SD) for baseline characteristics and scores. Pearson correlation was used to study the association between various domains of quality of life and existential concerns.
Results : Among HRQOL, the worst results obtained were in the domain of burden of kidney disease (33.45 ± 13.53), work status (49.07 ± 24.75), quality of social interaction (62.22 ±11.80), general health (43.06 ± 13.01), and physical functioning (47.50 ± 18.88). Disrupted personal integrity (12.80 ± 2.81) and loss of continuity (5.37 ± 1.17) were most bothersome existential concerns. A co-relational model behaves distinctly eliciting weak to strong association among various domains of HRQOL and existential concerns.
Conclusion : Patients with ESRD reported impaired HRQOL in most of the domains. Existential concerns are distinguished as important dimensions of HRQOL. Association between HRQOL and existential concerns showed that these dimensions are distinct, and there is a need for assessing and attending these entities through a multidisciplinary approach to alleviate the suffering and achieving a sense of overall wellbeing among patients.
Keywords: End-stage renal disease, Existential concerns, Health-related quality of life
|How to cite this article:|
Bele S, Bodhare TN, Mudgalkar N, Saraf A, Valsangkar S. Health-related quality of life and existential concerns among patients with end-stage renal disease. Indian J Palliat Care 2012;18:103-8
|How to cite this URL:|
Bele S, Bodhare TN, Mudgalkar N, Saraf A, Valsangkar S. Health-related quality of life and existential concerns among patients with end-stage renal disease. Indian J Palliat Care [serial online] 2012 [cited 2019 May 19];18:103-8. Available from: http://www.jpalliativecare.com/text.asp?2012/18/2/103/100824
| » Introduction|| |
Importance of evaluation of Health-Related Quality Of Life (HRQOL) among patients with End-Stage Renal Diseases (ESRD) is not only limited to its role as an independent predictor of risk of morbidity and mortality, , but it also imparts information related to their experience, expectations, and a status of overall well-being, the knowledge of which is essentially required to ameliorate suffering and provide a comprehensive care. Additionally, it can be used to evaluate the quality and effectiveness of patient care, comparing alternative therapies to improve clinical outcome and provide opportunities to establish effective patient provider relationship. Several studies demonstrated that HRQOL among ESRD patients is significantly impacted by virtue of disease factors such as pain, fatigue, disabilities, or treatment-related factors, eg, intrusiveness of therapy, untoward side effects, length of treatment, finance, etc. ,, Conventionally, quality of life is a broad ranging concept influenced in a complex way by the individual's physical health, psychological state, personal beliefs, social relationships, and their relationship to their environment.  Many researchers argued that spiritual concerns are important, especially among patient with life-threatening illnesses and suggested a biopsychosocial-spiritual model for the care of patients at the end of life.  Existential concerns of spirituality are an important dimension of quality of life and can lead to grave psychological morbidities, including suicidal ideation and desire for death, and are seldom considered while treating a patient.  Common existential issues with advanced diseases include death anxiety, hopelessness, meaninglessness and futility, disappointment, remorse, disruption of personal identity, increased dependency, relationship concerns/isolation, and loss of continuity. ,,,
In the absence of national registries, no reliable data are available on burden of chronic kidney disease in India, and limited data are available on the impact of disease on quality of life. A rising incidence of ESRD has been forecasted by several studies; however, providing support and care to such patients has remained a low priority area in India, with limited resources in terms of monetary support and availability of specialist and trained individuals. , There is an urgent need to evaluate and address these issues through interdisciplinary and collaborative efforts to yield a substantial gain in quality of life and overall wellbeing of patients. Hence, the present study aims to describe various dimensions of health-related quality of life and existential concerns as well as to examine the relationship between the two in order to propose a comprehensive strategy for care to optimize the quality of life and alleviate the suffering of the patient.
| » Materials and Methods|| |
A cross-sectional descriptive study was conducted during October-December 2011 in the dialysis unit of a teaching hospital. Study sample consisted of patients with ESRD undergoing maintenance hemodialysis for more than three months. Patients of age below 18 years, acutely ill, or hospitalized were excluded from the study. During the study period, a total of 58 patients were attending the dialysis unit, of which 54 were included in the study. Two patients excluded by virtue of their duration of hemodialysis less than three months. Of the remaining two patients, one was excluded because of ill health and another because of below 18 years of age. The questionnaire was administered by a post graduate student from department of anesthesia, previously trained in interview technique. The purpose of the study and manner of questions were explained to the participants and informed consent was taken prior to the start of the study. Privacy and confidentiality were maintained during the whole process. A semi-structured questionnaire was used to assess socio-demographic and clinical characteristics as well as existential concerns of the respondents. The HRQOL was evaluated using standardized scale of Kidney Disease Quality of Life-Short Form (KDQOL-SF™) questionnaire. 
The socio-demographic information obtained included age, sex, socioeconomic status, marital status, etc. Socioeconomic status of the respondent was assessed using Kuppuswammy classification, which is a composite index of income, occupation, and education.  The clinical characteristics studied included hemoglobin, albumin level, comorbid conditions, duration since illness, and duration since dialysis.
The HRQOL of the respondents was assessed by KDQOL-SF™ questionnaire, which is the most widely used quality of life measures for chronic kidney disease patients. The predictive value of KDQOL score for the risk of hospitalization as well as mortality in dialysis patients has been demonstrated in several large-scale studies. As per the finding of the Dialysis Outcomes and Practice Patterns Study, the adjusted relative risk values of mortality per 10-point lower HRQOL score were 1.13 for Mental Component Summary, 1.25 for Physical Component Summary, and 1.11 for Kidney Disease Component Summary. Similarly, the adjusted values for relative risk for first hospitalization were 1.06 for Mental Component Summary, 1.15 for Physical Component Summary, and 1.07 for Kidney Disease Component Summary.  The KDQOL is multidimensional and incorporates both generic and disease-targeted measures focusing on particular health-related concerns of an individual on kidney disease and on dialysis. There are 43 kidney disease-targeted items summarized into various domains: symptom/problem, effect of kidney disease on daily life, burden of kidney disease, work status, cognitive function, quality of social interaction, sexual function, sleep, social support, dialysis staff encouragement, and patient satisfaction. The general measures include 36 items (RAND-36) consisting of eight domains of physical and mental health status: physical functioning, role limitations caused by physical health problems, role limitations caused by emotional health problems, social functioning, emotional wellbeing, pain, energy/fatigue, and general health perceptions. The raw scores are converted into transformed score to a 0-100 range, with higher transformed score always reflecting better quality of life. 
Existential concerns were evaluated using an 18-item questionnaire divided into five domains. The questionnaire was prepared by reviewing existing literature ,,,, and in depth interview of eight respondents. Participants were requested to write their important concerns related to the issue on plain paper and then to organize these concerns in a way significant to them. Although the thoughts of the participants were provoked by asking several key questions related to their impaired functions, increased dependency, concerns about death, hopelessness, meaninglessness, remorse from unresolved guilt, impacted relationship, etc, no restrictions were placed on number of items listed by participants. The participants were then asked to rate items on a five-point Likert scale from never to great deal. Likert types of scale are advantageous for measuring attitudes or opinion of the respondents.  The contents were analyzed and grouping of the statements were done on five subcategories or domain of disrupted or distorted personal integrity (increased dependency, changes in body image, body function, intellectual functions, and social/professional functions), anticipation (concerns about death, hopelessness, meaninglessness, and futility), distress from retrospect (unfulfilled aspiration, depreciation of the value of previous achievements, remorse from unresolved guilt), relationship (empathetic suffering from the distress of family, conflicts in relationship and isolation), and loss of continuity (loss of enjoyable activity, loss of being oneself).
Data were analyzed using SPSS version 16. Baseline characteristics are expressed as simple mean ± SD and frequencies. Descriptive statistics for KDQOL were computed using a recommended method of analysis. Correlation analysis was used to evaluate the strength of association between domain of existential concerns and KDQOL. A correlation was considered statistically significant at a level of P < 0.05. A Pearson correlation coefficient (r), value of >0.50, was considered to exhibit strong positive correlation, a value between 0.35 and 0.5 was considered as a moderate correlation, whereas a value <0.35 was considered to demonstrate a weak correlation between the two domains.
| » Results|| |
[Table 1] displays baseline characteristics of the respondents. Participants were predominantly male (72.2%), with mean age of 42.13 ± 13.48 years. Among the participants, 83.3% were married and 61.1% belonged to lower socioeconomic status. Among the respondents, 77.8% had body mass index in normal range, whereas 7.4% were overweight. Hypertension was the most commonly observed comorbidity as reported by 87% of the participants, followed by diabetes reported by 14.8% of the respondents. All the participants studied were anemic, with mean hemoglobin value of 8.04 ± 1.47. Mean duration of dialysis was 1.16 ± 1.40 years.
[Table 2] depicts the quality of life scores of respondents on KDQOL-SF™. Among kidney disease-specific measure, the worst affected domains were burden of kidney disease (33.45 ± 13.53), work status (49.07 ± 24.75), and quality of social interaction (62.22 ± 11.80), whereas the best results obtained were in the domain of dialysis staff encouragement (94.91 ± 11.78), social support (83.95 ± 21.47), and patient satisfaction (81.48 ± 30.14). The best result of SF-36 was found in the domain of role limitations-emotional (86.42 ± 29.33)-and the worst result obtained was in the domain of general health (43.06 ± 13.01), physical functioning (47.50 ± 18.88), and role limitations-physical (56.94 ± 41.33). The score of the respondents on SF-12 mental health composite (49.24 ± 6.91) was better than SF-12 physical health composite (37.23 ± 8.07).
[Table 3] shows mean scores of existential concerns of respondents. The highest impacted domains observed were disrupted personal integrity (12.80 ± 2.81) and loss of continuity (5.37 ± 1.17). Relationship concerns (10.61 ± 1.72) and distress from retrospect (10.07 ± 1.44) were the least affected domains observed among the respondents.
Association between disease-specific measures of HRQOL and existential concerns are shown in [Table 4]. A strong association was observed between the domain of relationship concerns with patient satisfaction (r = 0.61, P = 0.00), dialysis staff encouragement (r = 0.55, P = 0.00), and between distress from retrospect with burden of kidney disease (r = 0.52, P = 0.00). A moderate association was observed between the domain of disrupted personal integrity with symptom/problem list (r = 0.41, P = 0.02) and effect of kidney disease (r = 0.36, P = 0.00). Similarly, a moderate association was observed between social support with distress from retrospect (r = 0.36, P = 0.00) and relationship concerns (r = 0.37, P = 0.00). A weak association was also observed between domain of anticipation with cognitive function (r = 0.33, P = 0.01) and effect of kidney disease (r = 0.30, P = 0.02).
|Table 4: Correlation between health-related quality of life and existential concerns|
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Correlation between SF-36, RAND-36, and existential concerns has been depicted in [Table 5]. A strong correlation was observed between anticipation with emotional well-being (r = 0.50, P = 0.00) and energy/fatigue (r = 0.79, P = 0.00). Distress from retrospect was strongly associated with physical functioning (r = 0.53, P = 0.00), emotional well-being (r = 0.50, P = 0.00), and energy/fatigue (r = 0.51, P = 0.00). Similarly, loss of continuity was a strongly associated emotional well-being (r = 0.52, P < 0.01). A moderate association was observed between the domain of pain with disrupted personal integrity (r = 0.38, P = 0.00), anticipation (r = 0.47 P = 0.00), and loss of continuity (r = 0.47, P = 0.00). A moderate association was also observed between social function with anticipation (r = 0.38, P = 0.00) and relationship concerns (r = 0.48, P = 0.00). A weak correlation was observed between physical functioning with disrupted personal integrity (r = 0.34, P = 0.01) and relationship concerns (r = 0.27, P = 0.04).
| » Discussion|| |
With the rising incidence of ESRD, measuring the overall impact of disease for provision of comprehensive care within limited resources has become the fundamental aspect of healthcare in India. ,, The present study focused on evaluation of HRQOL and existential concerns, which are vital among patients with ESRD. Mean age of patients in our sample was 42.13 ± 13.48 years, affecting the most productive years of their lives and is much lower than the mean age of ESRD patients in western counties.  Occurrence of diseases at younger age, comorbidities and lower socioeconomic status are important risk factors for depression and impaired quality of life among hemodialysis patients. , In our sample, all these factors were in preponderance, which again reflects the necessity of evaluation of QOL.
Among diseases targeting measures, the most predominantly affected areas were burden of kidney disease, work status, and quality of social interaction. The burden of kidney disease is a subjective perception of patients about how their disease interferes with their lives, how they feel frustrated, and feel like a burden on their family. Similarly, quality of social interaction was assessed by three statements: did you isolate yourself from people around you, act irritable towards those around you, and get along well with other people. These factors clearly demonstrate a deep psychological impact of the disease on the patient's attitude and behavior and suggest measures directed toward assessing a subjective perception of patients toward the illness and helping them for psychological adaptation of disease. Work status of patient was assessed by a two-item questionnaire related to patients' working condition at a paying job and whether disease kept them from working at a paying job. Inability to work coupled with low socioeconomic status and high cost of treatment may impact patient's psychological state, perceiving a high burden of disease and hampering the quality of social interaction. Dialysis outcome and practice pattern study compared HRQOL among dialysis patients on three continents. Japanese patients reported a much greater burden of kidney disease and lowest score for quality of social interaction compared with patients in the US and Europe and attributed to culturally mediated differences in the perception of patients.  Among generic measures, the worst result obtained was in the domain of general health and physical functioning, stating the impact of disease on the ability to perform day-to-day activities. Similar results were obtained by Fructuoso et al.  Surprisingly, the best result obtained was in the domain of role limitation emotional where patients believe that their emotions are not interfering with their ability to work or perform activities and mental health composite score was better than physical health composite. This again warrants a careful evaluation of the mental and emotional status of the patients, as renal failure patients have been noted as the biggest deniers of psychiatric illness.  Among existential concerns, the highest impacted domains were loss of continuity and disrupted personal integrity, which includes changes in the body image and function, changes in intellectual, social and professional functions, and increased dependency. Concerns of the patient regarding increased dependency and changes in body image caused by edema, integument disturbances, and access devices are well documented and can cause anxiety and stress, with significant impact on social interaction.  A multidisciplinary approach is required to minimize these concerns to help patients and their families to modify their appraisal of their lives, diminish distress and enhance a sense of self-efficacy. The relationship between the various domains of HRQOL and existential concerns were examined with the help of correlational analysis. A strong association was observed between the domain of distress from retrospect with burden of kidney disease. Also a strong association was observed between the domain of relationship concerns with dialysis staff encouragement and patient satisfaction. Patients who had unfulfilled aspiration or unresolved guilt seemed to perceive more burden of the disease, and those experiencing isolation or conflicts in relationship seemed more satisfied with health care. A strong correlation was observed between the domain of emotional well-being and anticipation, distress from retrospect and loss of continuity, which again highlights the importance of evaluation of emotional state of the patient. Overall, the correlational model behaves distinctly with various domains of existential concerns, with considerable overlap; however, no perfect correlation was observed between any two domains, suggesting that existential concerns are distinct and unique dimensions of HRQOL. Davidson et al. reported similar findings where low existential well-being was associated with poor HRQOL. 
Being a cross-sectional study, we are unable to ascertain causality between existential concerns and HRQOL. Further follow-up studies are required to understand the mechanism of these causalities. Intervention could not be taken up because of limited resources.
| » Conclusion|| |
Patients with ESRD reported an impaired HRQOL, with most commonly affected domain being burden of kidney disease, work status, quality of social interaction and general and physical health. Existential concerns are distinguished as important dimensions of HRQOL, with the most prominent area affected being disrupted personal integrity and loss of continuity. Association between HRQOL and existential concerns showed that these dimensions are distinct and there is a need for assessing and attending to these entities through a multidisciplinary approach to alleviate the suffering and achieve a sense of overall well-being among patients.
| » Acknowledgment|| |
We acknowledge the help of Dr Mahipal G, Department of Anaesthesia, for data collection.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]