Overview
Quality of life is a difficult and complex construct to measure that involves the interplay of numerous factors and extends into all aspects of an individual’s functioning. Wilson and Cleary provide a model that starts at a cellular level and progresses to the individual interacting with society.31 Quality of life not only encompasses genetics and the environment but also includes social, cultural, economic and psychological measurements. In assessing the success of therapy, quality of life and state of health has been used throughout the years as indicators of treatment outcome and subsequently can be employed to evaluate the cost effectiveness of therapies.
In this population, about 90% of patients on renal replacement are on dialysis and two thirds of the haemodialysis patients have permanent catheters as their primary access type. These findings emphasize the importance of this study in a Caribbean population and the impact of the factors affecting quality of life. Robinson et al has shown differences in the patient population on renal replacement therapy across the continents.32 In particular, it was seen that most of the patients in Japan on haemodialysis use an arteriovenous fistula. 32 The majority of patients around the globe have renal transplants.32
Biological factors
Mode of renal replacement therapy
In 1985, Evans and colleagues measured the quality of life of patients undergoing dialysis and transplantation. They found that 79.1% of transplant patients were able to function at nearly normal levels compared to between 47.5% and 59.1% of dialysis patients depending on the type of dialysis.33 In this study it was found that patients who received renal transplants had better quality of life scores compared with dialysis patients. (Figure 5, Table 2) Peritoneal dialysis patients performed better than haemodialysis patients. Renal transplant patients also achieved higher scores in the disease specific domains of the KDQOL questionnaire than dialysis patients. In the haemodialysis and peritoneal dialysis groups, the burden of kidney disease was the greatest challenge for patients. (Table 2) This suggests that transplantation is the most physiological as a form of renal replacement. In the transplant group, the mental domain subset had the lowest score compared to other domains of the KDQOL. The KTQ used for transplant patients further demonstrated that quality of life of transplant patients was high. This shows that in patients with end stage renal disease, the option of dialysis is still a great challenge for patients and physicians and institution of measures to improve quality of life for patients on peritoneal dialysis and haemodialysis is necessary. This study can guide decision makers with the potential solutions to assist with disease burden. Patients on haemodialysis with an AVF/G have better quality of life scores than those with a haemodialysis catheter because of fewer complications. Policy guidelines and support networks can therefore be improved for prompt referral and early surgery for an AVF/G when choosing haemodialysis.
Most studies have shown that renal transplant recipients have better quality of life scores.1-2, 8, 12-14 A meta-analysis done on the quality of life of patients on renal replacement therapy concluded that haemodialysis and peritoneal dialysis patients tend to have an inferior quality of life when compared to transplant recipients.12 Quality of life was worse for haemodialysis compared to peritoneal dialysis patients.12, 15 This was also found in this study. (Table 2) Peritoneal dialysis requires a patient to have good social support and adequate facilities in the home environment to perform the procedure on a daily basis. The medical social worker plays an integral role in deciding candidacy. Health care workers also meticulously train patients and their families regularly.
In the EQ-5D-3L health state, transplant recipients actually performed better than the age and gender adjusted population norms for Trinidad and Tobago. Renal transplant recipients performed the best on the VAS and index values. Ninety five percent of transplant recipients were in state 11111, the best state of health. The distribution of health states, VAS and index values further support renal transplantation being the most physiologically similar to normal functioning. Additional file 2, supplementary figure 1 shows that transplant recipients reported less problems than the normal population. This finding can be investigated in a future study. The ordinary least squares regression model in Table 7 shows that by placing patients on peritoneal dialysis or having a renal transplantation drastically improves quality of life for the number of years on renal replacement therapy. The decrement in quality of life is greatest in the haemodialysis group. There is a marked difference of 17 VAS points and 0.12 utility for patients on haemodialysis compared to peritoneal dialysis. A transition from peritoneal dialysis to haemodialysis would impact greatly on quality of life for suitable candidates.
Renal transplant recipients were also maintained on their therapy for longer periods than persons on other forms of therapy. Using a period of 5 years on renal replacement therapy, 8% of patients were on haemodialysis while about one third of all transplant recipients had functioning grafts. These findings can be due to a number of reasons including comorbidities, age and type of access among this group, which will influence mortality. Renal transplantation when compared to other forms of renal replacement therapy is associated with fewer hospitalizations and death influencing the cost effectiveness of this modality around the world.34-35
Renal transplantation is the most physiologically similar to one’s body as a mode of renal replacement therapy. Among transplant recipients, immunologic similarity can further be assessed with haplotype match between donor and recipient. Transplantation is also the least time consuming method of all modalities. Haemodialysis patients have approximately 3 sessions of haemodialysis per week, while peritoneal dialysis patients undergo dialysis sessions at their home. It is therefore expected that renal transplantation should lead to a better quality of life.
Lifestyle diseases
During this study, it was shown that almost three quarter of patients on renal replacement therapy in Trinidad and Tobago were diabetic and/or hypertensive. When patients with other stages of chronic kidney disease are taken into consideration, these numbers may be larger for this population. Over 80% of patients were diagnosed with kidney disease when renal replacement was necessary. This finding exposes the inadequacies of screening and the necessity for better strategies for preventing and treating lifestyle diseases in our setting.
Patients on haemodialysis also had more comorbidities than patients on other types of renal replacement suggesting that haemodialysis is associated with more complications. A CCI ≥ 6 equivalent to a 10-year survival probability of 0 was found only among the haemodialysis group.
Alcohol use
It has been shown that smoking and alcohol cessation in patients with renal disease may lead to a better quality of life. Francisco et al showed that patients who never smoked cigarettes or did not consume alcohol had higher quality of life scores.36 Patients with a higher quality of life may have fewer stressors and engage less frequently in these detrimental habits. In this study, patients who consumed 5 units or less of alcohol weekly had better quality of life scores.
AVF/G for haemodialysis
Patients with an AVF/G had better mean KDQOL-36 scores when compared to patients with permanent catheters. (Table 4) It has been shown that this access type is not only cost efficient but offers a better quality of life for patients because of fewer complications than a permanent catheter. 37, 38
Patients who were on haemodialysis for a longer time possibly were able to obtain an AVF/G before others because of the length of time in the public health care system. Improved quality of life in the older dialysis patients was likely due to the presence of an AVF/G.
Adiposity stores
Increased adiposity may be favourable for patients on haemodialysis providing an anti inflammatory benefit during times of cellular stress. 39-43 Studies have shown improved survival and a better quality of life of patients with a BMI >25 on haemodialysis.41-43
Age and gender
Additional file 2, supplementary figure 1 shows that younger patients reported fewer problems in the haemodialysis group in both male and female. A similar trend is seen in the normal population where younger patients report fewer problems. The changes of the aging process on organ function may account for these findings. A study that looked at patients on haemodialysis showed improved quality of life in younger patients.44 Older female patients on peritoneal dialysis reported fewer problems that those in the younger age groups while the extremes of age among male peritoneal dialysis patients reported more problems. Male transplant recipients in the 18 to 24 years group and 45-54 years group reported more problems. A future study for reasons for this trend should be considered.
Social factors Employment
Employment status significantly influenced quality of life. The majority of the employed population on renal replacement were transplant recipients followed by patients on peritoneal dialysis (Table 2). It is possible that patients receiving transplants were able to take advantage of employment opportunities because of more time availability. Transplant recipients followed by patients on peritoneal dialysis were able to obtain or continue their previous form of employment after commencing these modes of renal replacement therapy. In Canada, in the first 2 years after renal replacement therapy, employment opportunities was the best in the transplant subset.10 Table 2 also shows that in the occupation category of managers and professionals, transplant recipients formed the majority of these categories followed by patients on haemodialysis.
Economic status
Like employment, income is another factor affecting quality of life of patients receiving renal replacement therapy. This was also seen in another study by Alvares and colleagues. 8 In this population, patients earning more than $4000 Trinidad and Tobago dollars monthly (equivalent to approx. 600 US Dollars) had better mean quality of life scores.
Renal replacement therapy options
Options for renal replacement therapy include renal transplantation, peritoneal dialysis and haemodialysis. Similar to worldwide health care systems, each mode of therapy has specific requirements and criteria before initiation, some being more rigorous than others.
Haemodialysis in our population is associated with the poorest quality of life and the most problems reported by patients using the KDQOL-36 and EQ5D-3L questionnaires respectively. The 17 VAS points difference and 0.12 utility for patients on haemodialysis compared to peritoneal dialysis suggests that a transition to peritoneal dialysis can significantly affect health status. This also means that the choice of renal replacement therapy ultimately influences quality of life.
Certain modes of renal replacement therapy in our setting is associated with multiple checkpoints and prerequisites that should be satisfied, greater engagement of patients and their families and better support systems. As a result, these modalities of therapy like renal transplantation and peritoneal dialysis produce patients that are more likely to adhere to therapy and management of comorbidities. Table 9 demonstrates the requirements and factors implicated in this study for each modality of renal replacement therapy in our population.
Table 9: Factors implicated in the initiation of renal replacement therapy
Factors implicated in therapy
|
Mode of therapy (chronic setting)
|
Haemodialysis
|
Peritoneal dialysis
|
Renal transplant
|
Government funding
|
Yes
|
Yes
|
Yes
|
Multidisciplinary approach
|
Minimal
|
Minimal
|
Management of comorbidities by respective specialists
|
Social support
|
Medical social worker evaluates socioeconomic status to qualify for government funding
|
Multiple medical social worker evaluations
|
Multiple medical social worker evaluations and psychiatric evaluations
|
Evaluation of home and surroundings
|
Not required
|
Required as therapy is done at home
|
Not required
|
Family integration
|
Minimal- interaction with patient and haemodialysis nurses
|
Yes- adequate family meetings with social worker and peritoneal dialysis nurses
|
Yes-multiple family meetings with social worker and transplant unit
|
Counselling on therapy
|
Counselling by haemodialysis nurse
|
Counselling by peritoneal dialysis nurse
|
Educational lectures pre and post-transplant by transplant coordinators
Counselling by multidisciplinary team
|
Ethical assessment
|
Not required
|
Not required
|
Required
|
Minimal time interval to initiate therapy (state funded)
|
1-3 months
|
3-6 months
|
6 months -1 year
|
Limitations
The quality of life and health state of patients who were diagnosed with end stage renal disease and do not wish for renal replacement therapy can be analysed as a further sub group. Renal clearances during peritoneal dialysis and haemodialysis can be investigated in further studies as this will establish the efficiency of dialysis for patients. Quality of life of the normal population and patients receiving transplants is another potential area of further study.
Policy implication
This study should guide policies to improve quality of life of persons on renal replacement therapy. Prevention of chronic kidney disease and other lifestyle diseases in this population should be priority in healthcare. A fistula first effort for all patients on haemodialysis should be the gold standard and early fistula or graft protocols in all centres should be implemented.
Improved psychosocial support networks for dialysis patients and educational programmes for patients and families when deciding choice of renal replacement therapy should be introduced.
Haemodialysis centres require revision of protocols and strict adherence to guidelines to reduce catheter related bloodstream infections. Auditing at dialysis centres with strict quality control can be increased to focus on the issues patients encounter. Performing quality of life assessments for patients on renal replacement therapy in all centres can be instituted to improve care and compare treatment in an aim to prolong survival. In other settings, patient reported outcome measurements use the KDQOL among other questionnaires for internal quality improvement activities.45
The institution of policies for patients to be commenced on peritoneal dialysis once they are eligible instead of haemodialysis would significantly improve the health and quality of life of these patients. Early identification of haemodialysis patients who are suitable for peritoneal dialysis can greatly contribute to better quality of life within this setting where a small percentage of patients on renal replacement therapy receive transplants. The transplantation unit in our setting is state funded and requires a nephrologist referral. Furthermore, the centre performs at most 2 live donor transplants per month. In this developing country, an enhanced renal transplantation and peritoneal dialysis service would improve health related quality of life among patients with end stage renal disease.