The simultaneous assessments of medical care quality and outcomes are equally essential. However, routine measurement of patient’s Quality of Life (QOL) requires intensive attention. QOL instruments measure individual’s own views of his wellbeing. The core components of QOL are physical, psychological/emotional, functional, and work/occupational. QOL has been considered a crucial factor in the definition of successful treatment for chronic illnesses, and many related studies have been reported. According to the World Health Organization (WHO), QOL is defined as ‘individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”. It is a wide-ranging conception affected by the person’s complex physical health, psychological state, social relationships, level of independence, personal beliefs, and their relationship to leading features of their environment. QOL has implications to measure health system performance, mortality indicators, and compare the health of groups.
Chronic Kidney Disease (CKD) and End-stage Renal Disease (ESRD) are two leading global health concerns with high prevalence and extremely costly treatment procedures. The worldwide increase in the number of adult patients with Diabetes Mellitus (DM), Hypertension (HTN), and ageing has been causing a rapid increase in the incidence of CKD. Globally, the estimated prevalence of CKD is 11 to 13 per cent with the majority stage 3. CKD is a major determinant of poor health outcome of noncommunicable diseases. Although the scientific advances have been contributing to the gradual improvement of medication, medical treatment, medical care and health technology, still the concern of living a better life is most important towards patients rather than living longer. The effect of the treatment is not only measured in terms of survival, but also in terms of this perspective, and wellbeing claims more highlights than survival when the question of the effective outcome of treatment rises. Findings from previous reports related to factors affecting QOL (genetic, environmental, psychosocial, stress, emotional, and comorbidities) have shown that lower scores on QOL were strongly associated with higher risk of death and hospitalisation than clinical parameters; such as serum albumin levels in cases of ESRD patients. DM has also been correlated with low QOL. More sociodemographic factors were associated with declined QOL than physical factors as age, ethnicity, gender, education, income, and professional activity. It may explain the difficulty in establishing a linear relation with the glomerular filtration rate (GFR) for the influence of these different factors on the assessment of QOL. Thus, these findings demand more attention towards patients’ primary QOL measures and indicators.
Usually, both the positive and negative aspects of life are assessed regarding the objective and subjective QOL evaluations. Researchers have reported demographic, clinical, social, psychological, and treatment-related associations with QOL. A recent research described the functional definition of QOL conceptualisation by discussing following attributes: the ability to engage in vigorous activities; the ability to participate in social and occupational roles; and the ability to perform activities of daily living. Some reviews stipulated an overview of the instruments used and evaluated the instruments concerning their comprehensiveness, reliability, and validity. Few studies sought to establish the domains of QOL which are the most affected by ESRD. Another study has articulated a variety of generic and disease-targeted health-related QOL instruments for patients suffering from ESRD. Still, as per the WHO definition of QOL, the reviews have rarely discussed whether existing QOL instruments have covered both objective and subjective patient experiences.
QOL instruments provide a standard assessment of health, including questionnaires designed to be applicable for general public health measures, such as the Sickness Impact Profile (SIP), the Nottingham Health Profile (used for primary care), the Medical Outcomes Study Short Form 36-Item Health Survey (SF-36), SF-12, the European Quality of Life Instrument - EQ-5D, the McGill QOL (MQOL) scale, and GHQ-28. Researchers use instruments designed by WHO such as WHOQOL and WHOQOL-BREF. WHOQOLSRPB is also used to assess Spiritual, Religious and Personal Beliefs (SRPB) within the quality of life. Each QOL tool covers some domains (measurements of different characteristics), and they measure quantitative outcomes. Every instrument is scored on different domains; however, no instrument alone measures all the domains. In previous research reports, the most commonly used instruments were SF-36 and Kidney Disease Quality of Life (KDQOL).
Researchers have narrated either a linear or an inverse relationship within factors that improve or lower QOL. They have described attributes or used frameworks or models that encompass certain aspects of QOL, such as demographic data, information on diet, treatment patterns and outcomes, anthropometric biomarkers, and data related to mental health such as depression or anxiety. The low QOL scores are associated with higher rates of mortality and morbidity. Higher Health-Related Quality of Life (HRQOL) score is an important performance indicator for dialysis centres in managing ESRD. The main concepts of HRQOL are functional, social status, health status, wellbeing, patient satisfaction, patient preferences, role limitations, pain, mental health, and general health conditions. Sensitivity, reliability, validity, and cultural differences are to be considered in the KDQOL-36 scoring system and its scales. Many past studies highlighted that KDQOL-36 has high reliability and validity with some adjustments to cultural differences.
CKD in children causes additional burden on parents or caregivers in terms of socio-economic factors, longer treatments, and the successful transition to adult CKD care.Notably, children with CKD have a worse QOL than healthy children. GFR is one of the most important factors related to QOL; the levels of haemoglobin and serum albumin have been known to be QOL-related factors in adults with CKD. In a previous study, boys were found with better QOL than girls in the physical, emotional, and school functioning aspects. Growth parameters such as the height Z-score and weight Z-score of children with CKD indicated a close connection to the QOL, irrespective of CKD stage. There are some age-specific features, especially growth-related factors associated to growth and development in the QOL of children with CKD. Short stature is common in children with CKD and is linked with lower QOL scores in the physical functioning domain. It has been reported that behavioural disorders are closely related to lower QOL in children and adolescents with CKD in development. Based on a previous study, the QOL of children with pre-dialysis CKD is affected by several factors including sex, socioeconomic status, anaemia, GFR, existence of co-morbidities, growth retardation, and behavioural disorders. To improve the QOL of children with CKD, it is important to understand the respective effect of these factors on QOL and the attempt at early intervention. Instead of being limited to survival rates, the effective management of children with CKD demands comprehensive health care, including growth and development management.
The interaction of genetic factors, sedentary lifestyle, unhealthy habits, unbalanced diet, nicotine dependency, and elitism are the most common causes of health problems of the elderly people. CKD is considered as an irreversible and progressive syndrome that damages kidney functions until kidney failure. The estimated GFR decreases physiologically and exposes the elderly to a higher risk of developing CKD. Approximately, half of the world population aged 75 years or older has CKD at different stages. In the ageing process irrespective of expected physiological loss, studies show that adult patients with CKD undergoing conservative treatment have greater hearing loss compared to the healthy population, as well as to chronic kidney patients experiencing dialysis. It is recommended that auditory damage occurs due to pathological characteristics and the drugs used in the CKD treatment. A common clinical outcome in elderly with CKD is the manifestation of multiple comorbidities. A previous study established a positive relationship between the number of comorbidities and the number of complications. As comorbidities increase, the complications of CKD also upsurge. Consequently, as the complications rise, the quality of life falls.
In the developing countries, there are insufficient data available regarding the QOL of patients with ESRD. Over the following several years, the burden of CKD in the developing world is anticipated to rise intensely. It relates to the dramatic increase in the incidence of HTN and DM, improved economic outlook, and increase in life expectancy. Moreover, the continued/recurring high occurrence of infectious diseases (HIV, hepatitis B and C, malaria, skin infections, etc.) will continue to contribute to the high prevalence of kidney disease. Thus, initiating the development of acceptable methodologies for assessing the QOL of their patients is important for each country. Culture plays a vital role in modelling individual QOL. An individual’s values affect perception towards QOL that diverge within cultures as shown in a previous study. Cultural differences, outlook on life, literacy, economic status, access to the basic needs of life, nutritional status, mental health support, and involvement of national health systems should be highlighted. Gender concerns are also remarkable. Women face discrimination, get no or limited support, and have limited access to healthcare and educational opportunities in many societies of the developing world. QOL assessments need to take this problem into consideration. Determining the feasibility of using standardised instruments of the developed world can be a useful measure to assist the developing world.
The continuous development of Renal Replacement Therapy (RRT) is improving survival outcomes for CKD. Therefore, an important disease management goal must be to ensure that the QOL of children and young people with CKD remains adequate. To find a new kidney from appropriate donors for increasing life expectancy and life quality is the best way to treat CKD. However, it is a herculean task to find enough living or cadaveric kidneys in most of the developing countries due to economical and cultural reasons.
Additionally, combining the advanced medical-equipments, technologies (e-health) and medical services’ utilities have also improved. Although healthcare practice using the Internet, telemedicine, electronic/digital processes in health, video conferencing with patients, and electronic medical records have been applied, these services are not evaluated effectively for QOL. For example, there are very few published research works on telehealth in CKD. Telecare can extend homecare to peritoneal dialysis patients as patients usually prefer to stay at home, but the usage of telemedicine has experienced least researches. QOL instruments could be incorporated into telehealth-assisted technologies for broader understanding and application.
Physicians are now considering palliative care services to concentrate in symptom management for ESRD patients. It is particularly important in frail, illiterate, elderly multimorbid patients with limited physical activity, where dialytic treatment may not alter prognosis. In such situations, palliative care may provide immense help to improve QOL.
Several studies have revealed that QOL has improved with haemodialysis treatment in comparison to peritoneal dialysis. Another study has mentioned better QOL outcomes for patients treated at home. In case of homebased peritoneal dialytic treatment, it is essential to identify whether the type of treatment or the place of treatment affects QOL. Studying and statistically analysing other factors that are included in the model, it will be feasible to detect which factor affects QOL the most. Many instruments do not cover health literacy, which also has an impact on QOL evaluation. Data insufficiency of illiterate patients may be helped with pictographic forms of the instruments.
The instruments and reviewed models make only partial assessment of QOL by considering the WHO definition of QOL and its multidimensional aspects. Appropriate measurements for accurate scoring of QOL of CKD patients are not given much attention. As a result, instruments with ability to capture the greatest number of QOL characteristics to get a broader understanding are highly needed.
Never the less, QOL is multidimensional and many indicators are linked that affect a person’s overall QOL. Indicators based merely on certain characteristics of the patients pose serious limitations to the measure of QOL, which ultimately confines the QOL predictivity. Next decades challenges will includes imultaneous designing of a QOL instrument so that both diseasespecific and culture-specific, subjective and objective factors, can be taken into account for the complete assessment of QOL of ESRD patients.