The challenge for the caregiver of the patient with chronic kidney disease

Nephrology Dialysis Transplantation 2008

The challenge for the caregiver of the patient with chronic kidney disease

Charina Gayomali1, Scoot Sutherland2 and Fredric O. Finkelstein1,3,4
1 Hospital of St Raphael, New Haven, CT 2 Stanford University, Palo Alto, CA 3 Yale University 4 Renal Research Institute, New Haven, CT, USA
Correspondence and offprint requests to: Fredric O. Finkelstein, 136-Sherman Avenue, New Haven, CT 06515, USA. Tel: +1-203-787-0117; Fax: +1-203-777-3559; E-mail: fof@comcast.net
Keywords: burden; caregiver; CKD; dialysis; ESRD

The difficulty in developing effective strategies to deal with the expanding population of patients with chronic kidney disease (CKD) is challenging the resources of the nephrology community. These challenges are greatest for the youngest and the oldest patients—the patients who are physically and/or mentally unable to provide the necessary treatment for themselves and require a caregiver to assume major responsibility for their treatment.

The elderly population is expanding and placing increasing strain on the health care system. About 40% of the U.S. population >60 years of age has CKD [1]. And, the number of elderly patients who receive ESRD treatment has been rapidly increasing [2]. Currently, nearly one in five prevalent ESRD patients are of age 65–74, and 16% are of age 75 or older. These numbers can be expected to increase further as the population ages; it is projected that the number of individuals >65 years will increase from 35 million in 2000 to 70 million in 2030 [3]. By comparison, the number of pediatric patients receiving treatment for ESRD is small. However, technologic advances have led to improved survival and a larger pediatric dialysis population; between 1994 and 2004 in the United States, the number of incident pediatric dialysis patients increased by >30% [2].

The difficulties presented in providing adequate support for both old and young patients with any chronic disease, such as CKD, have been emphasized [4,5]. These difficulties impose a substantial burden on those directly responsible for giving care, especially for family members [4,5]. The concept of ‘caregiver burden’ has thus been used to capture this impact. Caregivers can be identified as the individual(s) who during the course treatment are most closely involved in caring for the patient and helping the patient cope with and manage his chronic illness [4,5]. The caregiver burden increases significantly as functional and cognitive impairments imposed by the chronic disease limit the ability of the patient to care for himself. Additional factors associated with caregiver burden include the relationship between caregiver (and their career) and patient, behavioral and psychological symptoms displayed by the patient, gender and adverse life events. A multi-factorial role and inter-dependence of these factors must be assessed to measure the impact of the caregiver burden.

The association of CKD with a variety of comorbid conditions presents special challenges. To the extent that these comorbidities compromise the patients’ overall functional and cognitive capacity, there is an increasing caregiver burden. The USRDS database notes that of patients starting dialysis aged 65 or older, nearly 40% of patients had five or more comorbidities [2]. Furthermore, these patients are frequently impaired in ways that directly impact on their dialysis therapy. Thus, the patients are often visually impaired and unable to drive, have difficulty with ambulation and have mood disorders and cognitive impairment [6,7]. The latter is particularly important since a recent review indicated that up to 70% of dialysis patients over age 55 have moderate to severe cognitive impairment [6].

The comorbidities associated with CKD in the elderly are less frequently seen in children. Partly, this is due to a shorter disease duration, both because children with CKD are diagnosed at an earlier age and because they experience shorter transplant waiting times. For those listed in the United States for a deceased donor kidney between 2003 and 2004, the median waiting time was 360 days for those 1 to 5 years of age and nearly four times that, 1416 days, for those 65 years and more.

However, children by their nature are dependent. As they are physically, mentally and developmentally unable to perform many tasks associated with CKD management, their family members must assume this responsibility. In addition to the physical burden of performing peritoneal dialysis (PD) and administering medications, caregivers are responsible for getting their children to clinic appointments. They are also responsible for providing special diets and nutritional supplements. Hospitalizations present particular stresses; the 2007 USRDS database noted that pediatric dialysis patients experienced two hospital admissions per patient year [2]. Finally, the caregivers for pediatric ESRD patients must bear the emotional and psychological burden of having a chronically ill child. They must cope with their own feelings/thoughts, but even more significantly, they must help their children cope with their own burden. Children with ESRD are often smaller and less energetic than their peers and may manifest cognitive difficulties. The children are often disfigured by a hemodialysis (HD) or PD catheter or an arteriovenous fistula. Adolescents, who might be able to perform more dialysis-related care than a younger child, are often those on whom the psychological toll of physical deformity is greatest.

The impact of providing care for patients with chronic illnesses has been studied for several diseases. Caregiving can be associated with emotional difficulties, such as depression, a variety of anxiety-related symptoms, excess medication use, a negative impact on perception of physical health and an impaired quality of life (QoL) [8–11]. And, caregivers who report strain have a higher mortality rate than non-caregiving controls [11]. Importantly, exploring ways of supporting caregivers can have beneficial effects on the outcomes for both the patient and the caregiver. Identifying family caregivers and monitoring their caregiver burden early to optimize the well-being of the caregiver have been emphasized [12–14]. Discussing coping skills can improve caregiver QoL even in the difficult environment of end-of-life care [12]. Psychosocial intervention can have significant, positive effects on caregivers’ burden and improve their satisfaction with their role [13,14].

In the pediatric ESRD population, there are minimal data regarding the identification of the aspects of caregiver burden, let alone research regarding successful interventions. Tsai et al. examined the psychosocial impact on caregivers for pediatric PD patients [15]. These authors highlighted the issue of caregiver burden, finding that few children under 14 years of age were capable of independently performing their PD. Furthermore, amongst caregivers of children on PD, the prevalence of depression was 28%, compared to only 5% in a control group of parents with healthy children. More striking is the fact that only 56% of these caregivers were aware of their tendency toward depression. Parents associate their own health with that of their children, and parents with children who have a more severe illness tend to report themselves as less well [16]. Fielding and Brownbridge examined psychosocial factors in caregivers of children with ESRD [17]. They found that the burden experienced by caregivers was greater for younger children and highlighted the impact of isolation when caring for a child with a chronic illness. Parents without social support were more likely to report problems and have symptoms of depression. Most remarkable was the impact of social impairment amongst these children. Parents of children with more severe social impairment were more likely to be depressed and/or anxious.

In addition, Tong et al. recently published a review of studies addressing experiences of parents caring for children with CKD [18]. By collating information from 16 studies, they were able to identify ‘themes’ amongst these parental caregivers. First was intrapersonal theme, emphasizing the psychological and physical strain of the caregivers who must cope with their own feelings of dismay, disbelief and uncertainty while facing fatigue and loss of independence. Second, parents face interpersonal turmoil, as the daily toil of CKD care impacts relationships with spouses, family, friends and even their other children. Finally, they discussed the theme of external needs, requiring balancing provision of adequate CKD care with other household obligations and financial needs.

Given what has been learned about the caregiver burden, it is surprising how little work has been done addressing this burden in supporting care for CKD patients. This is well discussed in the article in this issue of Nephrology Dialysis and Transplantation by Tong et al. [19]. These authors correctly point out that the caregiver burden of CKD is similar to what has been noted with other chronic diseases. They perform a systematic literature review to look for studies evaluating any interventions for caregivers of CKD patients. They have been able to identify only three articles that describe interventions for caregivers of CKD patients; all assess the effect of educational material given to the caregiver and describe an improvement of knowledge with no report of other outcomes.

It is indeed remarkable that so few studies have examined how to help the caregivers of CKD patients. Certainly the burden of caring for a dialysis patient presents special problems depending in part on whether the patient is maintained on center or home dialysis. Is there a difference in the caregiver burden for ESRD patients receiving in-center versus home dialysis? Most elderly patients who are initiated on HD are started on in-center HD. The difficulties in securing transportation to the dialysis center need to be underscored. And, there are major problems with the time to recovery after the HD session [20]. It takes an average of 6 h for HD patients to recover after a treatment, with elderly patients often reporting difficulties until the following day. In terms of home dialysis, although some home dialysis regimens (PD) are ostensibly self-care treatments, caregivers often assume some, if not total, responsibility for managing the dialysis [21]. Anxiety, fatigue, depression, deterioration in family relationships, social isolation and stress can occur when caregivers take charge of home dialysis for either adult patients or children [21–24]. This in turn may result in a more negative impact on the emotional and social aspects of caregivers’ lives [5]. The importance of caregivers in the success of PD has been noted; psychosocial and family problems contribute significantly to technique failure rates in elderly patients maintained on PD [25]. Recently, programs have developed to provide assisted PD at home for elderly patients, using nurses or patient-care technicians to lessen the caregiver burden [26–28]. Preliminary reports from such programs have reported success, but have not satisfactorily evaluated the impact of the program on the caregiver. The role of home HD in caring for elderly and pediatric patients is now being redefined because of the introduction of new, simpler techniques with a rapid growth of home HD in the United States [29]. The role of these new technologies and their caregiver burden needs to be fully investigated.

Conflict of interest statements. None declared.

(See related article by A. Tong et al. Support interventions for caregivers of people with chronic kidney disease: a systematic review. Nephrol Dial Transplant 2008; 23: 3960–3965.)

Notes

Comment on Tong A, Sainsbury P, Craig JC. Support interventions for caregivers of people with chronic kidney disease: a systematic review. Nephrol Dial Transplant 2008; 23: 3960–3965

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