Asian Journal of Pediatric Nephrology

REVIEW ARTICLE
Year
: 2018  |  Volume : 1  |  Issue : 1  |  Page : 3--7

Challenges in managing end stage kidney disease in children


Ali Asghar Anwar Lanewala 
 Department of Pediatric Nephrology, Sindh Institute of Urology and Transplantation, Karachi, Pakistan

Correspondence Address:
Ali Asghar Anwar Lanewala
Department of Pediatric Nephrology, Sindh Institute of Urology and Transplantation, Dewan Farooq Medical Complex, Deen Mohammed Wafai Road, Karachi 74800
Pakistan

Abstract

Treatment of children with end-stage kidney disease (ESKD) poses various challenges. While these have been studied extensively in affluent countries, data from developing regions are scant. In most rich countries, state-of-art management and financial and social support are provided by the government or available through insurance, and prognosis for even young children is improving. In contrast, most low-income countries, either lack in facilities for renal replacement or these are not afforded by the vast majority, and a large number of patients succumb for lack of treatment. In rare settings where such treatment is provided free of cost, the inability to meet costs of related expenses such as transport and accommodation result in families discontinuing management for most patients. Studies should define the extent and determinants of these concerns for children with ESKD in developing countries.



How to cite this article:
Anwar Lanewala AA. Challenges in managing end stage kidney disease in children.Asian J Pediatr Nephrol 2018;1:3-7


How to cite this URL:
Anwar Lanewala AA. Challenges in managing end stage kidney disease in children. Asian J Pediatr Nephrol [serial online] 2018 [cited 2021 May 6 ];1:3-7
Available from: https://www.ajpn-online.org/text.asp?2018/1/1/3/235475


Full Text



 Introduction



The global prevalence of end-stage kidney disease (ESKD) for children (0–19 year) was estimated at 18–100/million age-related population in 2008.[1] The prevalence varied widely across countries differing in socioeconomic status (SES),[2] potentially due to inequity in access to renal replacement therapies (RRT), both within and between countries.[3] Due to lack of formal regional or national registries, the true magnitude of ESKD or RRT is difficult to assess accurately in most developing regions, where almost 80% of world's population resides. Access to options for management of ESKD in children, listed in [Table 1], is limited by availability and cost, particularly in developing regions, and the impact of disease on the family depends on their SES and geopolitical location. Hence, disease outcomes vary from an untreatable terminal illness in poor countries to an easily managed chronic condition with reasonable quality of life in affluent ones. The objectives of this review are to identify common challenges faced in providing RRT, especially hemodialysis, to children, and to compare them between developing and developed countries. These concerns are divided into various domains as shown in [Table 2].{Table 1}{Table 2}

 Technical Considerations in Pediatric Dialysis



In countries with high gross domestic product (GDP), children with ESKD who receive RRT have 80%–90% survival at 1 year and 75% at 20 years.[4] With recent improvements in technology, children weighing <10 kg, conventionally managed on peritoneal dialysis,[5] are increasingly offered hemodialysis, considered technically challenging in young children.[6] Their small total blood volume places them at risk of hemodynamic instability, which is minimized by the use of recent machines with accurately calibrated pumps, small size dialyzers and tubings, and expertise to handle complications. Vascular access into the small lumen of blood vessels of children weighing <20 kg requires expertise in catheterization and/or fistula creation and the availability of smaller tubings. While technical requirements do not differ between adolescents and adults, their social and psychological well-being requires to be addressed effectively. [Table 3] summarizes guidelines for hemodialysis in children provided by the European Pediatric Dialysis Working Group.[7]{Table 3}

Facilities that meet these requirements are almost unheard of in developing countries, and the challenges faced have been described previously.[8] We may take Pakistan as an example, which has a population of nearly 208 million of which 35.5% are below 14 years of age but has fewer than ten pediatric nephrologists.[9] Only six centers in the public sector and two in the private sector have facilities for maintenance dialysis, providing dialysis to <500 children, of which about 350 are dialyzed at one center (Sindh Institute of Urology and Transplantation [SIUT]). Cadaveric transplants are rare and <75 live-related donor transplantations happen each year, of which 65 are performed at SIUT alone. These facilities are localized to urban areas and are inaccessible to the largely rural population, even if treatment is provided free of cost.

 Economic Disparity and Financial Challenges



Most developed countries have dialysis units well distributed across the country and expenses on medical care are borne by the state. However, national surveys conducted in the United States of America (USA), Canada, and United Kingdom suggest that about 40% of parents caring for children with disabilities experience financial burden.[10],[11],[12] Children with disabilities are more likely to be born in families with low SES, and their parents frequently face financial difficulties as they require more time off work and cannot work overtime.[13] Parents caring for children with CKD in Australia reported multiple expenses and difficulties in claiming allowances from the government.[14] The cost of dialysis in the USA was estimated at around $87,561 per person per year in 2010.[15] This cost is significantly lower in developing regions, probably due to lower expenditure on personnel and was estimated to be $8736 per person per year in India and Sri Lanka.[16],[17] However, these costs are still considerable; for example, the GDP of Pakistan is only around $1341 per capita (2017 estimate), and it would be impossible for most families to afford dialysis if expenses were out of pocket. A report from India suggests that of 10% of patients with ESKD who seek care, 60% are lost to follow-up within 3 months of initiating treatment.[18] Comparable predicaments have been reported from other low- and middle-income countries such as Brazil,[19] Algeria,[20] and China.[21] At SIUT, the expenditure on dialysis is subsidized to just $1680 per person per year using various strategies, including subsidized prices of dialysate, reuse of dialyzers, reduced taxes on consumables, and investment into human resources.[22] While several newly established centers in Pakistan now provide free of cost dialysis through funding supported by government and philanthropists, most units continue to be based in metropolitan cities, inaccessible to rural areas.

 Social Challenges



Many social challenges are unique to pediatric hemodialysis and may be more pronounced in developing countries, as discussed below.

Logistic support to the families

Sickness of a child causes a decline in the financial and SES of the family and also hampers its functionality. Both factors worsen medical outcomes of the disease.[23]

Children on hemodialysis require to be accompanied to the dialysis unit by adult family members, leading to the latter's absence from work three times a week for an indefinite period. Children on dialysis need extra care at home and may require unscheduled visits to the hospital. A meta-analysis of 16 studies reported that parents of children with CKD find it difficult to cope due to fatigue, uncertain outcome, and disruption of peer support within and outside the family.[24] They become overprotective, leading to social isolation and fatigue.[25] During chronic care, parents learn to recognize symptoms and their management, thus assuming the role of health-care provider.[26] However, this added responsibility causes social withdrawal and self-neglect.[27]

In developing countries like Pakistan, parents depend on the support of other family members, particularly if they live in joint families in which relatives share the burden of care along with parents. Families that lack such social support are often unable to continue chronic medical management even if it is provided free of cost. On the other hand, relatives and friends may shy away from keeping contact with families with children with CKD because they may require financial support, or from time to time, other favors, such as blood donation, which may be frequently needed by children not maintained on erythropoietin due to its high cost or limited availability. Further, parents may limit socialization to avoid embarrassing their children who cannot compete with peers in sports.

Impact on education and rehabilitation of children with ESKD

Hemodialysis units in developed countries time the sessions for school-going children such that their education is not interrupted, and/or make tutors available on the unit. Despite special arrangements for their education, children with ESKD continue to be at a disadvantage in their educational achievements and employment opportunities.[28] Patients were reported to be less socially mature, have fewer school qualifications, and have higher rates of unemployment than their peers.[29] In developing countries, special arrangements for children on dialysis are either not possible or not afforded. Schools are crowded and have buildings that are ill-equipped for sick children. Adjustments to accommodate time for schooling are not prioritized in the dialysis schedule as there are other pressing medical, social, or financial difficulties to cope with.

 Psychosocial Impact



Impact on healthy siblings

Due to time and energy spent on taking care of a sick child and coping with financial and psychological stresses, parents often overlook the needs of healthy children. Cognitive development scores of healthy children with sick siblings were found to be lower than those of age-matched controls.[30] Siblings are likely to exhibit irritability, social withdrawal, fear, and inhibition.[31] They report various concerns regarding the sibling's and their own health, miss their parents, and wish to grow up rapidly to share parents' burden.[32] Other studies similarly report direct and indirect impact on the upbringing, mutual relationships, family dynamics, and behavior of siblings.[33],[34] Siblings of children with cancer seem to adapt well to extreme levels without manifesting change in behavior, social competence, and self-perception.[35]

Effect on caretakers

Constant stress on caretakers is reported to alter neural, neuroendocrine, and immune responses, which impact physiologic and psychological outcomes.[36],[37],[38] This impact is estimated to be higher if the patient is a child.[39] Mortality rate for caretakers of chronically ill patients is reported to be higher than for the normal population.[40] Parental anxiety is inversely linked to the child's age, that is, the younger the child is, the more stress the parents report.[23] Depression is common; 28% of parents of children with ESKD were depressed as compared to 5% of healthy controls in Taiwan.[41] Sociodemographic factors such as lower SES, large families, limited support from other family members and young age of affected children were identified as risk factors for depression in parents.[42] Data from developing countries on the psychological impact on parents of children with chronic illness are scarce. Given the higher prevalence of the above risk factors in developing countries, the prevalence of anxiety and depression is expected to be high in parents of children with ESKD in developing regions.

Marital disharmony in parents of children with chronic disease

Care of a child with chronic illness may result in marital disharmony. While high rates of divorce are reported for parents of children with chronic disabilities,[43] a longitudinal survey of families in Norway concluded that the divorce and separation rates are similar to those in families of healthy children.[44] At SIUT in Pakistan, conflict between spouses are frequently encountered in families taking care of children with ESKD, possibly due to unequal sharing of responsibilities, and is particularly common where support from other family members is lacking. Conversely, the bond and understanding between spouses may be strengthened while taking care of a chronically ill child.

 Conclusions



The epidemiology of ESKD and provision of RRT in children vary across the world based on SES and geopolitical location of countries. The spectrum of challenges faced in the treatment of this chronic illness differs between developed and developing countries. In most developed countries, where comprehensive facilities are available, and most of the cost of treatment is borne by the state, parents still face various financial, social, and psychological problems. These problems have been extensively studied and measures are being taken to tackle these challenges. In contrast, in developing countries, facilities for appropriate medical management are either not available or are not afforded by the majority of the population. Even at places where the treatment is provided free of cost, there are serious challenges. Qualitative studies should help identify these challenges in developing countries so that measures can be taken to address them.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

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