Quality Of Life, Its Predictive Factors And Lived Experiences Of Patients On Haemodialysis

Chronic renal failure [CRF] is a complex debilitated condition influencing more than 70 million individuals around the world. In fact, more than 1,000,000 individuals are determined to have chronic renal failure every year. CRF is an advanced and irreversible kidney failure that is often progressive, in which kidney damage or decreased glomerular filtration (GFR) endures for more than three months or longer. Eventually, it leads to ESRD.1

According to the National Kidney Foundation, CKD affects an estimated 37 million people in the U.S. and 15% of the adult population; more than one in seven adults and approximately 90% of those with CKD don’t even know they have it. American adults are at risk for CKD, and it is more common in women (15%) than men (12%). CKD is the 6th leading cause of death in the United States, and the most common causes of CKD are diabetes and high blood pressure. The risk of CKD is greater, and nearly one in three of diabetes patients and one in five of high blood pressure patients are more prone to get CKD. Other risk factors for developing kidney disease include heart disease and a family history of kidney failure.2

Chronic renal failure and end-stage renal disease are characterised by a progressive decrease in GFR<15 ml. The incidence of CRF is increasing in the UK by 8% annually. The major causes of chronic renal failure are diabetes mellitus, Hypertension, Glomerulonephritis, Neuropathy and Nephropathy, and polycystic kidney disease. Haemodialysis is a process of purifying the blood of a person who is diagnosed as CKD. It removes waste products such as creatinine and urea and free water from the blood in patients undergoing haemodialysis. The rapid removal of excess fluid and waste products in the blood by haemodialysis causes muscle cramps. Muscle cramps also adversely affect sleep and health-related quality of life and are associated with depression and anxiety.6

According to Dr. Nahid Shahgholian and Hojatollah, a phenomenological study was conducted regarding the lived experiences of haemodialysis patients with the concept of care. This study was conducted on 17 patients who were undergoing haemodialysis purposive sampling was performed and data was collected through 30 to 60 min, face to face and in-depth semi-structured interviews. Data analysis was performed using Colizzi’s method. After data analysis, 4 themes and 9 sub-themes were extracted, and the concept of care emerged for the participant as empathy, social support, concern and good-quality dialysis.7

According to Dr. Sirikarn Dejvorakul, Rameshkumar, Cross-sectional study was conducted by interviewing 188 Thai patients with ESRD, who were on dialysis at Sanamchan Hospital. The QOL (quality of life) was assessed on three components, including the kidney disease component score (KDCS), Physical component score[pcs] and mental component score (MCS). The study concluded that factors like age, expenses for living, frequency of dialysis, and patients with more than three associated diseases were had a positive impact on the quality of life.8

Quality of life is a consistent and powerful predictor that affects the out-come in end stage renal disease patients on haemodialysis, namely physical, emotional, social illness impact, medical and social satisfaction and overall general health. The standard of health, comfort and happiness experienced by an individual or group.

A study was conducted in a dialysis centre in Greece from January 2015 to March 2016. Samples were selected by the convenience sampling Technique among 320 participants. Data were collected by the questionnaire, which, apart from the sociodemographic and clinical variables, Missoula-VITAS quality of life index (MVQOLI) was completed for assessing quality of life, the significance satisfaction rating from -4 to +4 and significance rating from 1-5.10

OBJECTIVES:

Aim of the study

To describe and explore the quality of life of haemodialysis patients

Objectives

To assess the quality of life of patients with haemodialysis based on predictive factors measured by the KDQOLSF-36 questionnaire.

To explore the lived experiences of patients on haemodialysis by Self-structured open-ended questionnaire.

To find out the combined effect of quality of life and the lived experience of haemodialysis patients.

To find out the association of the quality of life of patients on haemodialysis with selected baseline variables.

Operational Definition

Quality of Life: In this study, Quality of Life means assessment of individual wellbeing related to the standard of health, comfort and happiness may be affected over time by haemodialysis patients as measured by KDQOLSF-36 questionnaire.

Predictive Factors

Predictive factors are the factors that determine the quality of life of patients on haemodialysis.

Lived Experiences

This study refers to the experiences of patients on haemodialysis in relation to their QOL. The lived experience of a dialysis patient shows that care of patients means empathy, accompaniment in meeting daily needs, social support, concern and high-quality dialysis.

REVIEW OF LITERATURE

A study was conducted to explore the prevalence and disease burden of chronic kidney disease. The global estimated prevalence of CKD is 13.4% (11.7-15.1%), and patients with end-stage kidney disease (ESKD) needing renal replacement therapy are estimated between 4.902 and 7.083 million. The global increase in this disease is mainly driven by the increase in the prevalence of diabetes mellitus, hypertension, obesity, and ageing. The large number of deaths from poor access to renal replacement therapy in developing countries, and also a large increase in patients with ESKD in future, will produce a substantial financial burden for even the wealthiest countries. Cost-effectiveness of preventive strategies to reduce the disease burden should be evaluated in relation to the local economic development and resources. Strategies reducing the cardiovascular risk in CKD still need further evaluation in large trials, especially including patients with advanced kidney disease or end-stage kidney disease.

An explorative study was conducted to assess the Global Epidemiology of End-Stage Kidney Disease and Disparities in Kidney Replacement Therapy. The study was conducted from 2003 to 2016; incidence rates of treated ESKD were relatively stable in many higher-income countries but rose substantially predominantly in East and Southeast Asia. The prevalence of treated ESKD has increased worldwide, likely due to improving ESKD survival, population demographic shifts, higher prevalence of ESKD risk factors, and increasing KRT access in countries with growing economies. Unadjusted 5-year survival of ESKD patients on KRT was 41% in the USA, 48% in Europe, and 60% in Japan. Dialysis is the predominant KRT in most countries, with haemodialysis being the most common modality.

An explorative study was conducted to assess depression and mortality in end-stage renal disease. End-stage renal disease is growing in prevalence and incidence. With technical advancements, patients are living longer on haemodialysis. Depression is the most prevalent comorbid psychiatric condition, estimated at about 25% of end-stage renal disease samples. The identification and assessment of depression are confounded by the overlap between depression symptomatology and uremia. Several recent studies have employed time-varying models and identified a significant association between depression and mortality. Due to the high prevalence of depression and the potential impact on survival, well-constructed investigations are warranted.

An explorative study of the quality of life in haemodialysis patients. The sample studied consisted of 320 patients undergoing haemodialysis in a one-day dialysis centre. Data were collected by the completion of a specially designed questionnaire, which, apart from the sociodemographic and clinical variables, also included the scale Missoula-VITAS Quality of Life Index (MVQOLI) for assessing quality of life. The findings of the study revealed that the average total score of quality of life was found to be 17.43 (in a range 0-30). The total score of quality of life was found to be higher in participants <60 years (p= 0,009), of higher educational level (p=0.001), being very informed about the health problem (p=0,013), complied with therapeutic recommendations and the proposed diet (p=0,025 & p=0,012, respectively), having very good relations with the medical and nursing staff or other patients (p<0,001), not experiencing difficulties with social or family environment (p=0,001), had help at home (p <0,001) and in those who did not conceal their health problem from the social environment (p<0.001). Furthermore, it was found that the increasing duration of haemodialysis sessions entailed poorer quality of life (p<0.001). These results were largely confirmed by multiple linear regression. The study concludes that sociodemographic and clinical characteristics seem to influence the quality of life in haemodialysis patients.

A cross-sectional survey was conducted to assess the Quality of life and well-being of people receiving haemodialysis treatment in Scotland. Participants scored considerably lower than the UK general population in all domains of health-related quality of life, although mental health components were nearer to general population norms than physical health components. However, nearly half of the participants achieved a score on a general well-being questionnaire that was indicative of stress and anxiety. Increasing age was associated with better overall mental health but worse physical functioning. Increasing levels of hope and support were associated with improved general well-being.

METHODOLOGY:

Research Approach: A mixed-method approach.

Research Design: Descriptive sequential explanatory research design.

Research Variables:

Demographic Variables It includes the age of the patient, gender of the patient, educational status, employment status of the patient, income, Marital status, type of family, type of food habits, activities of daily living, and habits. The consensus was obtained from experts in the field of Nephrology.

Quantitative Variable: The quantitative variables under the study are quality of life and its Predictive factors among haemodialysis patients.

Qualitative Variable: The research variable is the variable being studied in the research. The qualitative research variable in the present study is the lived experiences of patients with haemodialysis.

Setting of the study: Dialysis unit of a super speciality hospital at Pathanamthitta District.

Sample: Patients on haemodialysis.
Sample Size and sampling technique: 48 samples and a non-probability sampling technique.

Tools:

Demographic Proforma

Clinical Profile Proforma

Modified KDQOLSF-36

Lived Experience Questionnaires

Data analysis: The quantitative data were analysed by using descriptive and inferential statistics. The qualitative data were analysed by describing the quality of life through thematic coding. Regression analysis was used to analyse predictive factors. For describing the association with the baseline variable was described by using Chi square test.

RESULTS:

The majority, 20 (41.7%) of participants, belong to the age groups 61-65, and very less 4(8.3%), were in the age group of 41-45 years of age. With reference to the gender, most of the participants are males, 37(77.1 %) and in relation to education,26 (54.2%) of them had a high school education. According to the occupation of participants, the majority were self-employed, 29 (60.4%). Unemployed 10 (20.8 %) and 09 (18.8%) had no occupation. With regard to family income, the majority, 43 (89.6%) of participant income was more than Rs 5000, and 05 (10.4%) had incomes of Rs 4001-5000/-. In relation to marital status, 45 (93.8 %) of participants were married, and 03(6.3%) were unmarried. According to the type of family, it shows participants of the nuclear family 48 (100%). In relation to the dietary pattern, the majority of participants were non vegetarian 81.3 % of participants and 09 (18.8%) were vegetarians. With regard to the activity of the samples, shows sedentary activity 97.9 % of participants are most active, and 1 (2.1%) was moderately heavy. The majority of the participants, 75% of participants, have no habits, 10.4% having smoking, 8.3% having alcoholism. Frequency of dialysis 58.3% twice a week and 41.7% thrice a week. In relation to the presence of other illnesses, the majority, 68.8% of participants, suffer from diabetes mellitus, 91.7% suffer from hypertension, 16.7% suffer from CHF and 4.2% from stroke. Concerning the total number of comorbidities, 45.8% is the most common type of comorbidity. 35.4% had one comorbidity. The data shows the support from the family, all 100% adequate. Access to treatment was 100% satisfactory. The majority of samples 81.3% of sleep disturbance, 77.1% muscle cramp, 56.3% excessive thirst, 54.2% joint pain and dry skin. The 100% satisfaction with access to treatment. It shows 43.8% less haemoglobin level, 37.5% had 8-10 gm % levels of haemoglobin, and 18.8% had more than 10 gm % of haemoglobin. It shows the total number of medications participants are on, 21 (43.8%) were on 5-10 medications, 11-15 medication and 06 (12.5%) were on more than 15 medications. It was found 68.8% had moderate impairment, 29.2% had severe alteration, and 1 (2.1%) had slight impairment in kidney disease based on quality of life. The findings showed that the majority of the participants, 68.8% moderate impairment, 29.2% severe alteration and 1(2.1%) had slight impairment.

The themes and subthemes that emerged from the lived experience of participants on haemodialysis. The themes are stated under these headings:

Theme 1: Physical, mental and spiritual aspects.

Subtheme: Physical Aspects:

The physical needs, such as mobility and participation in the various activities of the family due to a lack of mobility. The study participants also verbalised that they experienced physical discomfort. Participants recall that “daily life has been changed after the diagnosis of ESRD and undergoing haemodialysis. Another participant said, when I saw coworkers doing work, I was still trying to do my own work with all my efforts. Another participant says, “I am not able to walk, sleep, and work. I am not able to travel because this affects my personal life”. The other participant says, I am not able to go to work. I am facing problems while doing my work.

Subtheme: Anxiety Aspects:

Disturbed thoughts, irritability and lack of concentration, thoughts of guilt and life has ruined them. The mental aspects expressed by the participants, the factors that make me sad are financial crisis, travelling problems, duration of dialysis, and not being able to watch my daughter's children. Another participant said, “The factors that make up sad: the financial problem Physical health problem, emotional problem, travelling problem during dialysis process, symptoms”.

Subtheme: Spiritual aspect:

The majority of the participants expressed that they were not able to go to church, and were not able to pray and worship. The spiritual need was not met by the participants.

Subtheme: Emotional problems

Many participants, while undergoing haemodialysis, ‟experienced emotional disturbance”. They were not at ease emotionally. The ESRD and haemodialysis created a sort of emotional upset in terms of feeling angry, sad, irritated, tensed and even depressed. A study participant said, “The most troublesome situation is emotional problems, health, financial crisis and lack of participation”. Similar problems were expressed by the other participants, “I am facing loneliness, health-related problems, I think some lack of appetite and anxiety”.

Theme two: Fatigue:

Subtheme: Fatigue and discomfort;

Physical discomfort may be experienced when a person experiences fatigue. But participants undergoing haemodialysis expressed that their experience of fatigue was not just tiredness, but it is a word that spells beyond it. They said that when they experienced fatigue, they were bound physically by tiredness, and they were unable to do even insignificant activities that are insignificant like walking, speaking, etc. They also endured aches and discomforts as offspring of fatigue when they suffered it.

Subtheme: Financial

The study participants expressed, “The most troublesome situation is financial crisis Physical health problems and travelling problems, the most”. Another participant said, “The worst situation is the financial crisis, emotional problems and health problems, but I face them with confidence”. The majority of the participants said, “The most troublesome situation is emotional problems, health problems, and financial crisis backup participation”.

Theme four: Coping System.

Subtheme: Spouse support.

While coping with ESRD and haemodialysis, a few participants treasured the support that they received from their spouse. Participants tried to express their partners' love and support during haemodialysis. He said, “My wife supports and …she used to press my legs when I have aches…. I have pains”.

Subtheme: Coping strategies

The majority of the participants express, “The coping strategies; Reading newspaper, watching television, watching sports, interacting with society”. Similar views were expressed by other participants, the coping strategies; Reading newspaper watching television, worship into God and seeking social support.

Subtheme: Expectations Subtheme: Support:

The majority of the participants expressed that they need support from family and their spouse. A spiritual support system was also expected from the participants. The participants said, “I am receiving love and want care from doctors, caregivers. Full support from children and wife”. Similarly, another participant said, “The care I received is pleasant, warm care from nurses. I expect full support from the husband and cooperation from the family members”. The analysis concluded there is a significant association between the quality of life of patients and selected social and personal variables. The p<0.05, hence it was found that a statistically significant association between quality-of-life patients and dietary patterns of socio-personal variables.

CONCLUSION

The study concludes that the patients on haemodialysis were having impaired quality of life, and the researcher suggests that the proper care of patients by the nurses and family members can improve the quality of life of patients.

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