Assessing Burden Among Caregivers of Pediatric Dialysis and Kidney Transplant Patients

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Verghese This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4804786/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 03 Feb, 2025 Read the published version in Pediatric Nephrology → Version 1 posted 5 You are reading this latest preprint version Abstract Background While the increased burden on the caregivers of children and adolescents with kidney disease is described, the full scope of this burden remains unrecognized and unquantified. The Pediatric Renal Caregiver Burden Scale (PR-CBS) is a validated tool that evaluates caregiver burden in this population. Objective To assess caregiver burden in pediatric kidney failure at a tertiary center pediatric hospital pre-kidney transplant (KT) on dialysis, early post-KT (30 days to 364 days), and late post-KT (> 1 year). We also aimed to demonstrate the feasibility of a translated PR-CBS among Spanish-speaking caregivers. Methods In this cross-sectional study, caregivers were approached during routine clinic visits to complete a hard copy of the PR-CBS independently. Total PR-CBS scores (ranging 51 to 255) and mean domain scores (ranging 1 to 5) were calculated with higher scores reflecting increased burden. Descriptive statistics and T-tests were performed to assess differences between caregivers of children on dialysis versus caregivers of children who received a transplant. Results Of the 30 caregivers approached, 26 consented: 5 of children receiving dialysis and 21 post-transplant. Participant survey completion was 100%. Total burden score was higher for caregivers of children on dialysis than after transplant, but not significantly (160 vs 117, P = 0.09). The mean score for every domain in the PR-CBS was higher for caregivers of children on dialysis with significant differences in family life and caregiver identity (respectively, p = 0.04 and p = 0.03). PR-CBS scores did not differ across demographics. Four surveys were completed in Spanish; no significant difference was found between those completed in Spanish and English. Conclusion Caregivers of children with kidney failure experience high levels of burden. While a small sample size limited our ability to achieve significance, there was a trend for higher burden scores among caregivers of children on dialysis compared to those caring for children after transplant. This study highlights an oft-ignored need for targeted interventions to enhance quality of life for children with kidney failure and their families. Further, a larger, multi-center, adequately powered study is needed to further assess the degree of burden in this population. Pediatric Caregiver Burden Kidney Transplant Hemodialysis Peritoneal dialysis Figures Figure 1 Background Caregiver burden is defined as areas of physical, social, psychological, and financial overload experienced by caregivers [ 1 – 3 ]. In 2012, the National Survey of Children’s Health found quality of life (QOL) for caregivers of the general, healthy pediatric population are low, with only about 55–66% of parents reporting good physical or emotional health [ 4 ]. It is intuitive that for parents of children with chronic kidney disease, these percentages will be even lower as they must become proxy healthcare professionals for their children – administering medication, transporting to and from appointments and keeping strict diet/fluid regimens. As a result, caregivers of children with chronic conditions experience poor sleep quality, family conflict, anxiety, depression, financial stress, and lower quality of life [ 5 ]. This, in turn, has an impact on their children. Therefore, it is of utmost importance to better assess the scope of caregiver burden and evaluate targets for intervention. Children with kidney failure face lifelong increases in morbidity, and a decrease in their quality of life [ 6 ]. As such, caring for children and adolescents with kidney failure places an enormous burden on their caregivers [ 7 – 9 ]. In the last 30 years, the prevalence of end-stage kidney disease (ESKD) in pediatric patients has grown by over 32% [ 10 ]. Along with this, the incidence of dialysis and renal transplantation continues to rise [ 6 ]. However, how caregiver burden evolves throughout the disease course has not been fully explored. Though the burden among caregivers of adults with kidney failure on dialysis has been investigated, studies focused on caregiver burden in the pediatric ESKD population are limited. A 2018 study by Baek et. al, demonstrated significantly lower quality of life scores for parents of children/adolescents with kidney failure on dialysis [ 11 ]. Additionally, they showed significantly worse parental QOL if the child was on hemodialysis (HD) compared to peritoneal dialysis (PD) or post-KT [ 11 ]. Other studies have supported this hypothesis that quality of life and caregiver burden are lower and higher, respectively, for parents of patients on HD when compared to PD and KT [ 9 , 12 – 15 ]. Caregivers of children on PD, in addition to significantly lower QOL scores, have higher rates of depression when compared to a control group of caregivers with healthy children [ 16 ]. The pediatric renal caregiver burden scale (PR-CBS) is a recently validated instrument created to measure caregiver burden in children with ESRD [ 17 ]. Bauer et. al utilized the PR-CBS to assess caregiver burden in a pediatric dialysis population at three pediatric dialysis centers in the United States showing that dialysis caregivers experience significant caregiver burden and demonstrating the validity of the PR-CBS in an American population [ 9 ]. To our knowledge, there has not been a study to date using this scale to evaluate pediatric caregiver burden in post-KT caregivers or to compare burden between dialysis versus post-KT caregivers. Further, the PR-CBS has yet to be translated for use. This cross-sectional study was completed to assess caregiver burden in the pediatric ESKD patient population at a tertiary-care pediatric hospital at three time points–pre-KT on dialysis, early post-KT, and later post-KT, and serve to demonstrate the utility of the PR-CBS among Spanish-speaking caregivers of children with kidney failure. We hypothesized that caregivers of children/adolescents on dialysis would report significantly higher burden scores when compared to caregivers of those post-transplant. Methods Participants and setting Caregivers were eligible to participate if they were over 18 years of age and were the primary caregiver of a child (1–18 years of age) with kidney failure receiving chronic HD or PD or a child who received a kidney transplant and spoke either English or Spanish. Participants were recruited from the regional dialysis program and the transplant clinic at Ann & Robert H. Lurie Children’s Hospital of Chicago. This study was approved by the Institutional Review Board at Ann & Robert H. Lurie Children’s Hospital of Chicago (IRB #2022–5413). Caregivers were approached by the researcher at the dialysis center or during transplant clinic visits to fill out a hard copy of the PR-CBS. The study was reviewed with the research liaison and consent was obtained. Caregivers were asked to read the survey instructions to assess literacy and were able to ask the researcher questions prior to starting the survey. Basic demographic information was also collected on participant caregivers and their child. Pediatric Renal Caregiver Burden Scale (PR-CBS) The PR-CBS is a 51-item validated scale for measuring the burden of caregivers of children with chronic kidney disease [ 17 ]. Caregivers complete the survey by rating responses to statements on a 5-point Likert scale ranging from 1 (“never”) to 5 (“always”) to subjectively quantify problem aspects of caregiving over the preceding month. The PR-CBS has a total score (range 51–255), with higher scores reflecting a higher level of burden. The PR-CBS also has scores (range 1–5) within eight domains: physical, social, emotional, financial, caregiver identity, impact on family, impact on child, and contact with medical team [ 17 ]. Statistical analysis Caregiver characteristics and demographics were evaluated using summary statistics and were expressed as calculated means for continuous variables and frequency and percentages for categorical variables. To explore differences between PR-CBS scores and covariate categories, two-sided T tests were used. Covariate categories in this study include: caregiver age, caregiver gender, caregiver race, level of education (> high school vs. 30 miles vs < 30 miles), history of dialysis and time on dialysis. The KT group was further subdivided into early (30 to 364 days) and late (365 + days) post-KT. To evaluate the difference in PR-CBS scores between dialysis and KT and between early and late post-KT, a two-sided T test was used. Results A total of 30 caregivers were approached to complete the PR-CBS tool; a total of 26 caregivers consented including 5 caregivers of children on dialysis and 21 post-transplant (Table 1 ). All participants completed the entire survey. Twenty-one of the 26 primary caregivers were female (81%); and race/ethnic representation in participants was 37% White, 33.3% Black, 22.2% Hispanic, and 7.4% Asian. Caregivers of children on dialysis compared to those post-transplant were demographically similar. There was a higher percentage of married caregivers and those with other children in the home in the dialysis group. Compared to the dialysis group, the post-transplant caregiver group had a higher percentage (40% vs 76%, respectively) of caregivers employed. Of the 5 dialysis participants, 3 were caring for children on HD and 2 were caring for children on PD. The average time on dialysis in this group was nearly one year. The children on dialysis were younger on average when compared to the post-KT population (5.5 vs 9.5 years). Of the 21 post-transplant participants, 14 caregivers were early post-KT and 7 caregivers were late post-KT. Table 1 Demographics of caregivers of children with kidney failure Characteristics Overall N = 26 Transplant N = 21 Dialysis N = 5 Average age (yrs) 40.2 40.7 37.8 Female gender (n, %) 21 (81%) 17 (81%) 4 (80%) Lives within 30 miles of center (n, %) 11 (42%) 9 (43%) 2 (40%) Race (n, % Caucasian) 9 (35%) 7 (33%) 2 (40%) Greater than high school education (n, %) 12 (46%) 9 (43%) 3 (60%) Married (n, %) 17 (65%) 12 (57%) 5 (100%) Caregivers employed (n, %) 18 (69%) 16 (76%) 2 (40%) Other children in the home (n, %) 18 (69%) 13 (62%) 5 (100%) Prior history of dialysis 17 (65%) 12 (57%) 5 (100%) Years on dialysis (mean, sd) 1.35 (1.4) 1.6 (1.6) 0.76 (0.25) Of all caregivers surveyed, 92% (24/26) of caregivers had an elevated score in at least one domain; 80% of dialysis caregivers and 71% of post-transplant caregivers reported elevated scores in all domains. The mean total PR-CBS score was higher for caregivers of children on dialysis compared to those post-transplant (160 vs 117.6, p = 0.09) (Table 2 ). For every domain, mean scores were higher for the dialysis group compared to the post-transplant group. Mean scores were significantly higher among dialysis caregivers in the domains of caregiver role (3.15 vs 2.21, p = 0.03) and impact on family (3.00 vs 1.99, p = 0.04). For caregivers of children on dialysis, PR-CBS domain scores were highest for physical (mean 3.27), emotional (mean 3.25), impact on child (mean 3.15) and caregiver role/identity (mean 3.15) domains. For post-transplant, mean scores were highest for financial (mean 2.81) and impact on child (mean 2.5) (Table 2 ). Table 2 Two-sided t-test comparing domain scores between caregivers of children on transplant vs those of children receiving dialysis Domain Mean Dialysis Mean Transplant 95% CI of difference in means P-value Total Scores 160.0 117.6 36.4, 65.6 0.09 Physical (mean) 3.27 2.35 -2.07, 0.23 0.11 Social (mean) 2.80 2.39 -1.5, 0.76 0.48 Financial (mean) 3.00 2.81 -1.9, 1.5 0.82 Emotional (mean) 3.25 2.38 -1.8, 0.15 0.09 Caregiver Role/Identity (mean) 3.15 2.21 -1.8, -0.06 0.03* Impact on Family (mean) 3.00 1.99 -1.9, -0.03 0.04* Impact on Child (mean) 3.15 2.50 -1.6, 0.31 0.17 Contact with care team (mean) 2.70 1.90 -1.8, 0.24 0.12 When comparing early- and late post-KT, the mean total PR-CBS score was higher for the early post-transplant caregivers compared to those greater than 1 year out from transplant (Table 3 ). As above, for every domain, there was a trend for high mean scores in the early versus late post-transplant caregivers. Both caregiver groups, PR-CBS means scores were highest for financial (mean 2.87 and 2.43) and impact on child (2.86 and 2.23). Table 3 Two-sided t-test comparing domain scores between caregivers of children early- vs late- post-KT Domain Mean Early Post- Transplant Mean Late Post- Transplant 95% CI of difference in means P-value Total Scores 123.4 102.4 -20.9, 62.9 0.31 Physical (mean) 2.50 2.05 -0.56, 1.6 0.33 Social (mean) 2.46 2.25 -0.9, 1.3 0.70 Financial (mean) 2.87 2.43 -1.1, 2.1 0.55 Emotional (mean) 2.50 1.93 -0.3, 1.5 0.20 Caregiver Role/Identity (mean) 2.41 1.85 -0.17, 1.3 0.13 Impact on Family (mean) 2.15 1.69 -0.4, 1.3 0.29 Impact on Child (mean) 2.68 2.23 -0.4, 1.3 0.45 Contact with care team (mean) 2.00 1.76 -0.7, 1.2 0.60 A total of 4 surveys were completed in Spanish. There was no significant difference in scores between those completed in English compared to those completed in Spanish. Further, there were no significant differences in mean scores across demographic or other transplant/dialysis characteristics. Discussion Although caregiving is a normal part of parenting a child, this role takes on a different level of significance when a child is diagnosed with a chronic medical condition. The diagnosis of kidney failure confronts the primary caregiver with the difficult reality of learning to manage their child’s chronic health condition while also juggling tasks of everyday living. Our study highlights the high prevalence of burden in this population and affirms the utility of the PR-CBS for assessing and categorizing caregiver burden in pediatric kidney disease. Almost all included caregivers experienced burden in at least one of the eight domains assessed, with over half experiencing burden in all domains. These findings are consistent with previous studies that have shown high levels of burden, negative impact on caregiver mental health and poor quality of life of caregivers of children with CKD compared to other caregivers [ 13 ]. This burden is pervasive, touching nearly every domain in which a family functions. Of all domains explored with the PR-CBS, impact on the child had the highest frequency of burden with over 80% of caregivers reporting this as a significant problem. This domain on the PR-CBS includes statements like “worry about how my child is coping” or “sadness about the things my child misses out on” [ 17 ]. High burden scores in this domain - across all groups - provides a glimpse into the oft hidden worry caregivers experience for their children daily. In this study, we confirm our a priori hypothesis that caregivers of children on dialysis experience higher levels of burden when compared to the post-KT population (Table 2 ). Prior qualitative studies have found that caregivers report several burdens with dialysis initiation - especially citing changes in social life, loss of time, and added caregiver responsibilities [ 8 ]. A myriad of factors may contribute to these findings. Dialysis caregivers may experience higher burden scores due to less freedom. The challenges and responsibility of caring for a child with kidney failure on dialysis inevitably result in lifestyle changes that change the caregivers’ time for work, rest, and social life. Caregivers have been reported to feel tired, isolated, and overwhelmed [ 13 ]. The added cognitive load and stress factor for the caregiver may also lead to an increased prevalence of psychological symptoms, including depression and anxiety, which is known to impact caregiver burden scores [ 12 – 13 ]. Though dialysis caregivers had higher scores in every domain, the physical and emotional domains had the overall highest scores (Table 2 ). This finding of higher physical burden scores has also been reported in other studies with caregivers of children with CKD reporting lower “general health” scores compared to caregivers of healthy children [ 7 ]. The higher emotional burden scores for dialysis caregivers found in our study is also supported by qualitative studies that found higher rates of depression among caregivers of patients on dialysis [ 11 – 13 , 16 ]. Our findings are also consistent with prior studies on caregiver burden in other chronic illnesses. Previous studies have demonstrated moderate to high care burden in caregivers of children with cancer [ 18 ] and caregivers of children with congenital heart disease report negative changes in social life, increased stress in meeting responsibilities, and insufficient time for themselves [ 19 ]. Though this has not been assessed in the pediatric population, studies in the adult post-transplant population have found that caregivers of adult transplant recipients were significantly less burdened than dialysis caregivers which is similar to our findings reported here [ 8 , 12 ]. While research on the burden experienced by dialysis caregivers has expanded in recent years, research on the experience of kidney transplant caregivers is limited. To our knowledge, there have not been studies done to evaluate pediatric caregiver burden in post-KT caregivers or to assess how burden changes from the early to late post-transplant period. This suggests that, despite their crucial role in the post-transplant care continuum, post-KT caregivers are understudied. This study begins to investigate how caregiver burden changes overtime after a pediatric kidney transplant. In adult studies, the acute period (within the first month) after transplant has been found to have the highest level of burden due to stressors around surgery and physical recovery [ 20 ]. These studies have found that there is a decrease over time, but most did not find a significant difference in burden scores and quality of life scores until greater than 1 year post solid organ transplant [ 8 ]. Though our small sample size limits our ability to find statistical significance, there is a trend for lower caregiver burden scores from the early to late post-KT (Table 3 ). Further studies should follow individuals’ caregiver burden scores at multiple time points post-KT to better assess how this burden changes and how we can support patients and their caregivers. Contrary to our initial hypothesis, the age of the caregivers, marital status and distance from tertiary care center did not have any significant association with caregiver burden. In other qualitative studies assessing burden in caregivers of children on dialysis, increased burden scores were associated with higher maternal age and marital status [ 9 , 11 ]. Distance from the medical center has been associated with increased caregiver burden in prior studies, but this is mostly found with caregivers of adult patients with kidney failure [ 21 ]. In our study, there was no significant difference in burden scores between male and female caregivers; however other studies have consistently reported that being a female caregiver is associated with increased caregiver burden [ 22 ]. Several factors likely contribute to this finding. For example, gender differences and burden may reflect current societal gender roles with women still largely regarded as the primary caregiver - therefore readily self-imposing more of the caregiving duty than their male counterpart. Further, women may more readily voice their caregiving experience. Henceforth differences between men and women may be due to their willingness to report caregiver burden. This study demonstrates the utility of the PR-CBS for Spanish-speaking caregivers. All Spanish-speaking caregivers offered the PR-CBS were able to complete it in its entirety without reported difficulty. There was no significant difference in scores between surveys completed in English compared to those completed in Spanish. It has been found that Hispanic families use fewer professional caregiver resources, are more likely to rely on relatives compared to their non-Hispanic White counterparts, and are more likely to experience higher levels of caregiver burden when compared to non-Hispanic, white caregivers [ 23 – 24 ]. Though our sample size of surveys completed in Spanish was small, it highlights the importance and utility of this translated tool in further studies of caregiver burden in the pediatric kidney failure and transplant population. This study has several limitations. First, the single-center, predominantly English-speaking sample limits its generalizability; though, the study population was heterogeneous in terms of race and other demographic factors (Table 1 ). The small sample size–especially in the dialysis population–limited the ability to detect associations. Further, a child’s comorbidities and the time from diagnosis could have impacted burden and was not considered in this current study. Another limitation is related to the nature of cross-sectional studies as it is not possible to determine cause-and -effect relationships between the study variables. Though further work is needed to comprehensively capture the experience of caregivers of children with kidney failure, this study demonstrates the utility of the PR-CBS to assess caregiver burden among both dialysis and post-transplant patients. Conclusion Caregivers of children with kidney disease experience high levels of burden. While a small sample size limited our ability to achieve significance, there was a trend for higher burden scores among caregivers of children on dialysis compared to post-transplant. There was also a trend for lower burden scores in the late compared to the early post-KT group. This study shows the PR-CBS can be used to assess burden among caregivers of children on dialysis and after transplantation. It also demonstrates utility as a tool to capture burden among Spanish-speaking caregivers. This study highlights the oft-ignored need for targeted interventions to enhance quality of life for children with kidney failure and their families. Further, a larger, multi-center, adequately powered study is needed to further assess the degree of burden in this population. 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Cite Share Download PDF Status: Published Journal Publication published 03 Feb, 2025 Read the published version in Pediatric Nephrology → Version 1 posted Editorial decision: Major Revisions Needed 21 Aug, 2024 Reviewers agreed at journal 26 Jul, 2024 Reviewers invited by journal 26 Jul, 2024 Editor assigned by journal 26 Jul, 2024 First submitted to journal 25 Jul, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4804786","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":332347144,"identity":"7f8c75cd-a4a0-4848-b5e2-bfd273182b87","order_by":0,"name":"Brianna Borsheim","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABFklEQVRIiWNgGAWjYBACAwkgwdjAwMPA3twA5AIRM3ODBHFaeA7CtDASp4WBQSKxASLCQECLuXTzsY8/d9jI6M582CZdUWAjb87O2Hi7ouKOPQN77+MXWLRYzjmWPJv3TBqP2e3ENskzBmmGO5sZmy3PnHmW2MBz3MwCm8Nu5BgzM7YdhmhpMDicYHCYsU2yse1wAoNEGpsBDi2MP9v+85jdPAjS8h+q5d9he3xaGHjbDvCY3WAEaTkA1dJwGBgIacwPcPiFmbctmcfsTGKzZYNBsuGGw0C/NBw7nNjGc4wNR4gdBjrMzt7s+OGDNxv+2MkbnAcxag7b87O3MX/AFdLYAdAKNrwRhBWQassoGAWjYBQMTwAAcJFmfR2SSxoAAAAASUVORK5CYII=","orcid":"https://orcid.org/0000-0001-6670-6450","institution":"Ann and Robert H Lurie Children's Hospital of Chicago","correspondingAuthor":true,"prefix":"","firstName":"Brianna","middleName":"","lastName":"Borsheim","suffix":""},{"id":332347145,"identity":"f47c23d1-009d-4fa7-b1cb-b7657bd4b988","order_by":1,"name":"Jill Krissberg","email":"","orcid":"","institution":"Ann and Robert H Lurie Children's Hospital of Chicago","correspondingAuthor":false,"prefix":"","firstName":"Jill","middleName":"","lastName":"Krissberg","suffix":""},{"id":332347146,"identity":"3838d531-0be4-476a-8da1-4e36d3c51e1e","order_by":2,"name":"Debora Matossian","email":"","orcid":"","institution":"Ann and Robert H Lurie Children's Hospital of Chicago","correspondingAuthor":false,"prefix":"","firstName":"Debora","middleName":"","lastName":"Matossian","suffix":""},{"id":332347147,"identity":"56db01a1-0388-44c7-9016-3a1839409343","order_by":3,"name":"Priya S. Verghese","email":"","orcid":"","institution":"Ann and Robert H Lurie Children's Hospital of Chicago","correspondingAuthor":false,"prefix":"","firstName":"Priya","middleName":"S.","lastName":"Verghese","suffix":""}],"badges":[],"createdAt":"2024-07-26 02:17:03","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4804786/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4804786/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00467-025-06690-9","type":"published","date":"2025-02-03T15:57:36+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":63806309,"identity":"2068a482-7760-4ea3-94c8-23e46d270556","added_by":"auto","created_at":"2024-09-02 13:38:52","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":164154,"visible":true,"origin":"","legend":"\u003cp\u003eFactors impacting caregiver burden as described by PR-CBS\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-4804786/v1/0dddc78f888df8a4efdcff43.png"},{"id":75930828,"identity":"f16d6350-ab6b-4bac-bb18-f4fe22b9266c","added_by":"auto","created_at":"2025-02-10 16:13:39","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":775757,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4804786/v1/c3e396bc-71a4-43fe-917f-4a9a1fd98e50.pdf"}],"financialInterests":"","formattedTitle":"Assessing Burden Among Caregivers of Pediatric Dialysis and Kidney Transplant Patients","fulltext":[{"header":"Background","content":"\u003cp\u003eCaregiver burden is defined as areas of physical, social, psychological, and financial overload experienced by caregivers [\u003cspan additionalcitationids=\"CR2\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. In 2012, the National Survey of Children\u0026rsquo;s Health found quality of life (QOL) for caregivers of the general, healthy pediatric population are low, with only about 55\u0026ndash;66% of parents reporting good physical or emotional health [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. It is intuitive that for parents of children with chronic kidney disease, these percentages will be even lower as they must become proxy healthcare professionals for their children \u0026ndash; administering medication, transporting to and from appointments and keeping strict diet/fluid regimens. As a result, caregivers of children with chronic conditions experience poor sleep quality, family conflict, anxiety, depression, financial stress, and lower quality of life [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. This, in turn, has an impact on their children. Therefore, it is of utmost importance to better assess the scope of caregiver burden and evaluate targets for intervention.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eChildren with kidney failure face lifelong increases in morbidity, and a decrease in their quality of life [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. As such, caring for children and adolescents with kidney failure places an enormous burden on their caregivers [\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. In the last 30 years, the prevalence of end-stage kidney disease (ESKD) in pediatric patients has grown by over 32% [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Along with this, the incidence of dialysis and renal transplantation continues to rise [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. However, how caregiver burden evolves throughout the disease course has not been fully explored.\u003c/p\u003e \u003cp\u003eThough the burden among caregivers of adults with kidney failure on dialysis has been investigated, studies focused on caregiver burden in the pediatric ESKD population are limited. A 2018 study by Baek et. al, demonstrated significantly lower quality of life scores for parents of children/adolescents with kidney failure on dialysis [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Additionally, they showed significantly worse parental QOL if the child was on hemodialysis (HD) compared to peritoneal dialysis (PD) or post-KT [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Other studies have supported this hypothesis that quality of life and caregiver burden are lower and higher, respectively, for parents of patients on HD when compared to PD and KT [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan additionalcitationids=\"CR13 CR14\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Caregivers of children on PD, in addition to significantly lower QOL scores, have higher rates of depression when compared to a control group of caregivers with healthy children [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe pediatric renal caregiver burden scale (PR-CBS) is a recently validated instrument created to measure caregiver burden in children with ESRD [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Bauer et. al utilized the PR-CBS to assess caregiver burden in a pediatric dialysis population at three pediatric dialysis centers in the United States showing that dialysis caregivers experience significant caregiver burden and demonstrating the validity of the PR-CBS in an American population [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. To our knowledge, there has not been a study to date using this scale to evaluate pediatric caregiver burden in post-KT caregivers or to compare burden between dialysis versus post-KT caregivers. Further, the PR-CBS has yet to be translated for use. This cross-sectional study was completed to assess caregiver burden in the pediatric ESKD patient population at a tertiary-care pediatric hospital at three time points\u0026ndash;pre-KT on dialysis, early post-KT, and later post-KT, and serve to demonstrate the utility of the PR-CBS among Spanish-speaking caregivers of children with kidney failure. We hypothesized that caregivers of children/adolescents on dialysis would report significantly higher burden scores when compared to caregivers of those post-transplant.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eParticipants and setting\u003c/h2\u003e \u003cp\u003eCaregivers were eligible to participate if they were over 18 years of age and were the primary caregiver of a child (1\u0026ndash;18 years of age) with kidney failure receiving chronic HD or PD or a child who received a kidney transplant and spoke either English or Spanish. Participants were recruited from the regional dialysis program and the transplant clinic at Ann \u0026amp; Robert H. Lurie Children\u0026rsquo;s Hospital of Chicago. This study was approved by the Institutional Review Board at Ann \u0026amp; Robert H. Lurie Children\u0026rsquo;s Hospital of Chicago (IRB #2022\u0026ndash;5413). Caregivers were approached by the researcher at the dialysis center or during transplant clinic visits to fill out a hard copy of the PR-CBS. The study was reviewed with the research liaison and consent was obtained. Caregivers were asked to read the survey instructions to assess literacy and were able to ask the researcher questions prior to starting the survey. Basic demographic information was also collected on participant caregivers and their child.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003ePediatric Renal Caregiver Burden Scale (PR-CBS)\u003c/h2\u003e \u003cp\u003eThe PR-CBS is a 51-item validated scale for measuring the burden of caregivers of children with chronic kidney disease [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. Caregivers complete the survey by rating responses to statements on a 5-point Likert scale ranging from 1 (\u0026ldquo;never\u0026rdquo;) to 5 (\u0026ldquo;always\u0026rdquo;) to subjectively quantify problem aspects of caregiving over the preceding month. The PR-CBS has a total score (range 51\u0026ndash;255), with higher scores reflecting a higher level of burden. The PR-CBS also has scores (range 1\u0026ndash;5) within eight domains: physical, social, emotional, financial, caregiver identity, impact on family, impact on child, and contact with medical team [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStatistical analysis\u003c/h2\u003e \u003cp\u003eCaregiver characteristics and demographics were evaluated using summary statistics and were expressed as calculated means for continuous variables and frequency and percentages for categorical variables. To explore differences between PR-CBS scores and covariate categories, two-sided T tests were used. Covariate categories in this study include: caregiver age, caregiver gender, caregiver race, level of education (\u0026gt;\u0026thinsp;high school vs. \u0026lt; high school), marital status (married vs. not married), caregiver employment (employed vs. not employed), other children in the home (yes vs. no), distance from the hospital (\u0026gt;\u0026thinsp;30 miles vs\u0026thinsp;\u0026lt;\u0026thinsp;30 miles), history of dialysis and time on dialysis. The KT group was further subdivided into early (30 to 364 days) and late (365\u0026thinsp;+\u0026thinsp;days) post-KT. To evaluate the difference in PR-CBS scores between dialysis and KT and between early and late post-KT, a two-sided T test was used.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eA total of 30 caregivers were approached to complete the PR-CBS tool; a total of 26 caregivers consented including 5 caregivers of children on dialysis and 21 post-transplant (Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). All participants completed the entire survey. Twenty-one of the 26 primary caregivers were female (81%); and race/ethnic representation in participants was 37% White, 33.3% Black, 22.2% Hispanic, and 7.4% Asian. Caregivers of children on dialysis compared to those post-transplant were demographically similar. There was a higher percentage of married caregivers and those with other children in the home in the dialysis group. Compared to the dialysis group, the post-transplant caregiver group had a higher percentage (40% vs 76%, respectively) of caregivers employed. Of the 5 dialysis participants, 3 were caring for children on HD and 2 were caring for children on PD. The average time on dialysis in this group was nearly one year. The children on dialysis were younger on average when compared to the post-KT population (5.5 vs 9.5 years). Of the 21 post-transplant participants, 14 caregivers were early post-KT and 7 caregivers were late post-KT.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographics of caregivers of children with kidney failure\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristics\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eOverall\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;26\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eTransplant\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;21\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eDialysis\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;5\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAverage age (yrs)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40.2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40.7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e37.8\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFemale gender (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21 (81%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (81%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e4 (80%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLives within 30 miles of center (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11 (42%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (43%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (40%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eRace (n, % Caucasian)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9 (35%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e7 (33%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (40%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGreater than high school education (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12 (46%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (43%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (60%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarried (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17 (65%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (57%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaregivers employed (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (69%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16 (76%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2 (40%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther children in the home (n, %)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18 (69%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13 (62%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrior history of dialysis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e17 (65%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (57%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e5 (100%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYears on dialysis (mean, sd)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1.35 (1.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1.6 (1.6)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0.76 (0.25)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eOf all caregivers surveyed, 92% (24/26) of caregivers had an elevated score in at least one domain; 80% of dialysis caregivers and 71% of post-transplant caregivers reported elevated scores in all domains. The mean total PR-CBS score was higher for caregivers of children on dialysis compared to those post-transplant (160 vs 117.6, p\u0026thinsp;=\u0026thinsp;0.09) (Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). For every domain, mean scores were higher for the dialysis group compared to the post-transplant group. Mean scores were significantly higher among dialysis caregivers in the domains of caregiver role (3.15 vs 2.21, p\u0026thinsp;=\u0026thinsp;0.03) and impact on family (3.00 vs 1.99, p\u0026thinsp;=\u0026thinsp;0.04). For caregivers of children on dialysis, PR-CBS domain scores were highest for physical (mean 3.27), emotional (mean 3.25), impact on child (mean 3.15) and caregiver role/identity (mean 3.15) domains. For post-transplant, mean scores were highest for financial (mean 2.81) and impact on child (mean 2.5) (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eTwo-sided t-test comparing domain scores between caregivers of children on transplant vs those of children receiving dialysis\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean Dialysis\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMean Transplant\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e95% CI of difference in means\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eP-value\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal Scores\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e160.0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e117.6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e36.4, 65.6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.09\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePhysical (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-2.07, 0.23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.80\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.5, 0.76\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.48\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFinancial (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.00\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.81\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.9, 1.5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.82\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmotional (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.8, 0.15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.09\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaregiver Role/Identity (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.8, -0.06\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.03*\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact on Family (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.00\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.99\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.9, -0.03\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.04*\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact on Child (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e3.15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.6, 0.31\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.17\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eContact with care team (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.90\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.8, 0.24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eWhen comparing early- and late post-KT, the mean total PR-CBS score was higher for the early post-transplant caregivers compared to those greater than 1 year out from transplant (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). As above, for every domain, there was a trend for high mean scores in the early versus late post-transplant caregivers. Both caregiver groups, PR-CBS means scores were highest for financial (mean 2.87 and 2.43) and impact on child (2.86 and 2.23).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eTwo-sided t-test comparing domain scores between caregivers of children early- vs late- post-KT\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"5\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDomain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMean Early Post- Transplant\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMean Late Post- Transplant\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003e95% CI of difference in means\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eP-value\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTotal Scores\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e123.4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e102.4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-20.9, 62.9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.31\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePhysical (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.05\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.56, 1.6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.33\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.25\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.9, 1.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.70\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFinancial (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.87\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-1.1, 2.1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.55\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmotional (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.50\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.93\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.3, 1.5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.20\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCaregiver Role/Identity (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.85\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.17, 1.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact on Family (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.4, 1.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.29\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact on Child (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.68\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e2.23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.4, 1.3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eContact with care team (mean)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c2\"\u003e \u003cp\u003e2.00\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e1.76\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e-0.7, 1.2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e0.60\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eA total of 4 surveys were completed in Spanish. There was no significant difference in scores between those completed in English compared to those completed in Spanish. Further, there were no significant differences in mean scores across demographic or other transplant/dialysis characteristics.\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e Although caregiving is a normal part of parenting a child, this role takes on a different level of significance when a child is diagnosed with a chronic medical condition. The diagnosis of kidney failure confronts the primary caregiver with the difficult reality of learning to manage their child\u0026rsquo;s chronic health condition while also juggling tasks of everyday living. Our study highlights the high prevalence of burden in this population and affirms the utility of the PR-CBS for assessing and categorizing caregiver burden in pediatric kidney disease.\u003c/p\u003e \u003cp\u003eAlmost all included caregivers experienced burden in at least one of the eight domains assessed, with over half experiencing burden in all domains. These findings are consistent with previous studies that have shown high levels of burden, negative impact on caregiver mental health and poor quality of life of caregivers of children with CKD compared to other caregivers [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. This burden is pervasive, touching nearly every domain in which a family functions. Of all domains explored with the PR-CBS, impact on the child had the highest frequency of burden with over 80% of caregivers reporting this as a significant problem. This domain on the PR-CBS includes statements like \u0026ldquo;worry about how my child is coping\u0026rdquo; or \u0026ldquo;sadness about the things my child misses out on\u0026rdquo; [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. High burden scores in this domain - across all groups - provides a glimpse into the oft hidden worry caregivers experience for their children daily.\u003c/p\u003e \u003cp\u003eIn this study, we confirm our a priori hypothesis that caregivers of children on dialysis experience higher levels of burden when compared to the post-KT population (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). Prior qualitative studies have found that caregivers report several burdens with dialysis initiation - especially citing changes in social life, loss of time, and added caregiver responsibilities [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. A myriad of factors may contribute to these findings. Dialysis caregivers may experience higher burden scores due to less freedom. The challenges and responsibility of caring for a child with kidney failure on dialysis inevitably result in lifestyle changes that change the caregivers\u0026rsquo; time for work, rest, and social life. Caregivers have been reported to feel tired, isolated, and overwhelmed [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. The added cognitive load and stress factor for the caregiver may also lead to an increased prevalence of psychological symptoms, including depression and anxiety, which is known to impact caregiver burden scores [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThough dialysis caregivers had higher scores in every domain, the physical and emotional domains had the overall highest scores (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e). This finding of higher physical burden scores has also been reported in other studies with caregivers of children with CKD reporting lower \u0026ldquo;general health\u0026rdquo; scores compared to caregivers of healthy children [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. The higher emotional burden scores for dialysis caregivers found in our study is also supported by qualitative studies that found higher rates of depression among caregivers of patients on dialysis [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eOur findings are also consistent with prior studies on caregiver burden in other chronic illnesses. Previous studies have demonstrated moderate to high care burden in caregivers of children with cancer [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] and caregivers of children with congenital heart disease report negative changes in social life, increased stress in meeting responsibilities, and insufficient time for themselves [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. Though this has not been assessed in the pediatric population, studies in the adult post-transplant population have found that caregivers of adult transplant recipients were significantly less burdened than dialysis caregivers which is similar to our findings reported here [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile research on the burden experienced by dialysis caregivers has expanded in recent years, research on the experience of kidney transplant caregivers is limited. To our knowledge, there have not been studies done to evaluate pediatric caregiver burden in post-KT caregivers or to assess how burden changes from the early to late post-transplant period. This suggests that, despite their crucial role in the post-transplant care continuum, post-KT caregivers are understudied. This study begins to investigate how caregiver burden changes overtime after a pediatric kidney transplant. In adult studies, the acute period (within the first month) after transplant has been found to have the highest level of burden due to stressors around surgery and physical recovery [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. These studies have found that there is a decrease over time, but most did not find a significant difference in burden scores and quality of life scores until greater than 1 year post solid organ transplant [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Though our small sample size limits our ability to find statistical significance, there is a trend for lower caregiver burden scores from the early to late post-KT (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e). Further studies should follow individuals\u0026rsquo; caregiver burden scores at multiple time points post-KT to better assess how this burden changes and how we can support patients and their caregivers.\u003c/p\u003e \u003cp\u003eContrary to our initial hypothesis, the age of the caregivers, marital status and distance from tertiary care center did not have any significant association with caregiver burden. In other qualitative studies assessing burden in caregivers of children on dialysis, increased burden scores were associated with higher maternal age and marital status [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Distance from the medical center has been associated with increased caregiver burden in prior studies, but this is mostly found with caregivers of adult patients with kidney failure [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. In our study, there was no significant difference in burden scores between male and female caregivers; however other studies have consistently reported that being a female caregiver is associated with increased caregiver burden [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Several factors likely contribute to this finding. For example, gender differences and burden may reflect current societal gender roles with women still largely regarded as the primary caregiver - therefore readily self-imposing more of the caregiving duty than their male counterpart. Further, women may more readily voice their caregiving experience. Henceforth differences between men and women may be due to their willingness to report caregiver burden.\u003c/p\u003e \u003cp\u003eThis study demonstrates the utility of the PR-CBS for Spanish-speaking caregivers. All Spanish-speaking caregivers offered the PR-CBS were able to complete it in its entirety without reported difficulty. There was no significant difference in scores between surveys completed in English compared to those completed in Spanish. It has been found that Hispanic families use fewer professional caregiver resources, are more likely to rely on relatives compared to their non-Hispanic White counterparts, and are more likely to experience higher levels of caregiver burden when compared to non-Hispanic, white caregivers [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Though our sample size of surveys completed in Spanish was small, it highlights the importance and utility of this translated tool in further studies of caregiver burden in the pediatric kidney failure and transplant population.\u003c/p\u003e \u003cp\u003eThis study has several limitations. First, the single-center, predominantly English-speaking sample limits its generalizability; though, the study population was heterogeneous in terms of race and other demographic factors (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The small sample size\u0026ndash;especially in the dialysis population\u0026ndash;limited the ability to detect associations. Further, a child\u0026rsquo;s comorbidities and the time from diagnosis could have impacted burden and was not considered in this current study. Another limitation is related to the nature of cross-sectional studies as it is not possible to determine cause-and -effect relationships between the study variables. Though further work is needed to comprehensively capture the experience of caregivers of children with kidney failure, this study demonstrates the utility of the PR-CBS to assess caregiver burden among both dialysis and post-transplant patients.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eCaregivers of children with kidney disease experience high levels of burden. While a small sample size limited our ability to achieve significance, there was a trend for higher burden scores among caregivers of children on dialysis compared to post-transplant. There was also a trend for lower burden scores in the late compared to the early post-KT group. This study shows the PR-CBS can be used to assess burden among caregivers of children on dialysis and after transplantation. It also demonstrates utility as a tool to capture burden among Spanish-speaking caregivers. This study highlights the oft-ignored need for targeted interventions to enhance quality of life for children with kidney failure and their families. Further, a larger, multi-center, adequately powered study is needed to further assess the degree of burden in this population.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eFunding: none\u003c/p\u003e\n\u003cp\u003eConflicts of interest: none\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEthics Approval: approved by Lurie Children\u0026rsquo;s Hospital IRB\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConsent to participate and publish: obtained with consent to be in study\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eWightman, Aaron. \u0026ldquo;Caregiver Burden in Pediatric Dialysis.\u0026rdquo; \u003cem\u003ePediatric Nephrology\u003c/em\u003e, vol. 35, no. 9, 2019, pp. 1575\u0026ndash;1583., https://doi.org/10.1007/s00467-019-04332-5. \u003c/li\u003e\n\u003cli\u003eLaakkonen, Hanne, et al. \u0026ldquo;Parent\u0026ndash;Child and Spousal Relationships in Families with a Young Child with End-Stage Renal Disease.\u0026rdquo; \u003cem\u003ePediatric Nephrology\u003c/em\u003e, vol. 29, no. 2, 2013, pp. 289\u0026ndash;295., https://doi.org/10.1007/s00467-013-2618-1. \u003c/li\u003e\n\u003cli\u003eChou, Kuei-Ru. \u0026ldquo;Caregiver Burden: A Concept Analysis.\u0026rdquo; \u003cem\u003eJournal of Pediatric Nursing\u003c/em\u003e, vol. 15, no. 6, 2000, pp. 398\u0026ndash;407., https://doi.org/10.1053/jpdn.2000.16709. \u003c/li\u003e\n\u003cli\u003e\u0026ldquo;National Survey of Children\u0026rsquo;s Health.\u0026rdquo; \u003cem\u003ePsycTESTS Dataset\u003c/em\u003e, 2012, https://doi.org/10.1037/t28445-000. \u003c/li\u003e\n\u003cli\u003eJavalkar, Karina, et al. \u0026ldquo;Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions.\u0026rdquo; \u003cem\u003eChildren\u003c/em\u003e, vol. 4, no. 5, 2017, p. 39., https://doi.org/10.3390/children4050039. (11)\u003c/li\u003e\n\u003cli\u003eKaspar, C.D.W., et al. \u0026ldquo;A Review of Pediatric Chronic Kidney Disease.\u0026rdquo; \u003cem\u003eBlood Purification\u003c/em\u003e, vol. 41, no. 1-3, 2016, pp. 211\u0026ndash;217., https://doi.org/10.1159/000441737. \u003c/li\u003e\n\u003cli\u003eLopes, Marcos, et al. \u0026ldquo;Health-Related Quality of Life of Children and Adolescents with CKD Stages 4\u0026ndash;5 and Their Caregivers.\u0026rdquo; \u003cem\u003ePediatric Nephrology\u003c/em\u003e, vol. 29, no. 7, 2014, pp. 1239\u0026ndash;1247., https://doi.org/10.1007/s00467-014-2769-8. \u003c/li\u003e\n\u003cli\u003eVan Pilsum Rasmussen, Sarah E., et al. \u0026ldquo;Kidney Dyads: Caregiver Burden and Relationship Strain among Partners of Dialysis and Transplant Patients.\u0026rdquo; \u003cem\u003eTransplantation Direct\u003c/em\u003e, vol. 6, no. 7, 2020, https://doi.org/10.1097/txd.0000000000000998. \u003c/li\u003e\n\u003cli\u003eBauer, Abbie, et al. \u0026ldquo;Caregiver Burden in Pediatric Dialysis: Application of the Paediatric Renal Caregiver Burden Scale.\u0026rdquo; \u003cem\u003ePediatric Nephrology\u003c/em\u003e, vol. 36, no. 12, 2021, pp. 3945\u0026ndash;3951., https://doi.org/10.1007/s00467-021-05149-x. \u003c/li\u003e\n\u003cli\u003eWarady, Bradley A., and Vimal Chadha. \u0026ldquo;Chronic Kidney Disease in Children: The Global Perspective.\u0026rdquo; \u003cem\u003ePediatric Nephrology\u003c/em\u003e, vol. 22, no. 12, 2007, pp. 1999\u0026ndash;2009., https://doi.org/10.1007/s00467-006-0410-1. \u003c/li\u003e\n\u003cli\u003eBaek, Hee Sun, et al. \u0026ldquo;Impact of End-Stage Renal Disease in Children on Their Parents.\u0026rdquo; \u003cem\u003eNephrology\u003c/em\u003e, vol. 23, no. 8, 2018, pp. 764\u0026ndash;770., https://doi.org/10.1111/nep.13083. \u003c/li\u003e\n\u003cli\u003eAvşar, U., et al. \u0026ldquo;Caregiver Burden, Anxiety, Depression, and Sleep Quality Differences in Caregivers of Hemodialysis Patients Compared with Renal Transplant Patients.\u0026rdquo; \u003cem\u003eTransplantation Proceedings\u003c/em\u003e, vol. 47, no. 5, 2015, pp. 1388\u0026ndash;1391., https://doi.org/10.1016/j.transproceed.2015.04.054. \u003c/li\u003e\n\u003cli\u003eBardak, Simge, et al. \u0026ldquo;The Other Side of the Coin in Renal Replacement Therapies: The Burden on Caregivers.\u0026rdquo; \u003cem\u003eInternational Urology and Nephrology\u003c/em\u003e, vol. 51, no. 2, 2018, pp. 343\u0026ndash;349., https://doi.org/10.1007/s11255-018-2029-0.\u003c/li\u003e\n\u003cli\u003eZazzeroni, Luca, et al. \u0026ldquo;Comparison of Quality of Life in Patients Undergoing Hemodialysis and Peritoneal Dialysis: A Systematic Review and Meta-Analysis.\u0026rdquo; \u003cem\u003eKidney and Blood Pressure Research\u003c/em\u003e, vol. 42, no. 4, 2017, pp. 717\u0026ndash;727., https://doi.org/10.1159/000484115. \u003c/li\u003e\n\u003cli\u003eJung, Hee-Yeon, et al. \u0026ldquo;Better Quality of Life of Peritoneal Dialysis Compared to Hemodialysis over a Two-Year Period after Dialysis Initiation.\u0026rdquo; \u003cem\u003eScientific Reports\u003c/em\u003e, vol. 9, no. 1, 2019, https://doi.org/10.1038/s41598-019-46744-1. \u003c/li\u003e\n\u003cli\u003eTsai, T.-C., et al. \u0026ldquo;Psychosocial Effects on Caregivers for Children on Chronic Peritoneal Dialysis.\u0026rdquo; \u003cem\u003eKidney International\u003c/em\u003e, vol. 70, no. 11, 2006, pp. 1983\u0026ndash;1987., https://doi.org/10.1038/sj.ki.5001811. \u003c/li\u003e\n\u003cli\u003eParham, Rhian, et al. \u0026ldquo;Development of a Measure of Caregiver Burden in Paediatric Chronic Kidney Disease: The Paediatric Renal Caregiver Burden Scale.\u0026rdquo; \u003cem\u003eJournal of Health Psychology\u003c/em\u003e, vol. 21, no. 2, 2014, pp. 193\u0026ndash;205., https://doi.org/10.1177/1359105314524971. \u003c/li\u003e\n\u003cli\u003eChaghazardi M, Janatolmakan M, Rezaeian S, Khatony A. Care burden and associated factors in caregivers of children with cancer. Ital J Pediatr. 2022 Jun 13;48(1):92. doi: 10.1186/s13052-022-01291-w. PMID: 35698160; PMCID: PMC9195224.\u003c/li\u003e\n\u003cli\u003eDalir Z, Heydari A, Kareshki H, Manzari ZS. Coping with Caregiving Stress in Families of Children with Congenital Heart Disease: A Qualitative Study. Int J Community Based Nurs Midwifery. 2020 Apr;8(2):127-139. doi: 10.30476/IJCBNM.2020.83029.1113. PMID: 32309454; PMCID: PMC7153423.\u003c/li\u003e\n\u003cli\u003eWeng LC, Huang HL, Wang YW, et al. Primary caregiver stress in caring for a living-related liver transplantation recipient during the postoperative stage. \u003cem\u003eJ Adv Nurs\u003c/em\u003e. 2011;67:1749\u0026ndash;1757 \u003c/li\u003e\n\u003cli\u003eAlshammari B, Noble H, McAneney H, Alshammari F, O\u0026apos;Halloran P. Factors Associated with Burden in Caregivers of Patients with End-Stage Kidney Disease (A Systematic Review). Healthcare (Basel). 2021 Sep 14;9(9):1212. doi: 10.3390/healthcare9091212. PMID: 34574986; PMCID: PMC8468425. \u003c/li\u003e\n\u003cli\u003eChiao C.-Y., Wu H.-S., Hsiao C.-Y. Caregiver burden for informal caregivers of patients with dementia: A systematic review. \u003cem\u003eInt. Nurs. Rev. \u003c/em\u003e2015;62:340\u0026ndash;350. doi: 10.1111/inr.12194. (21)\u003c/li\u003e\n\u003cli\u003eSehar U, Rawat P, Choudhury M, Boles A, Culberson J, Khan H, Malhotra K, Basu T, Reddy PH. Comprehensive Understanding of Hispanic Caregivers: Focus on Innovative Methods and Validations. J Alzheimers Dis Rep. 2023 Jun 6;7(1):557-574. doi: 10.3233/ADR-220094. PMID: 37313490; PMCID: PMC10259076. \u003c/li\u003e\n\u003cli\u003eDilworth-Anderson P, Williams IC, Gibson BE (2002) Issues of race, ethnicity, and culture in caregiving research: A 20-year review (1980\u0026ndash;2000). \u003cem\u003eGerontologist\u003c/em\u003e 42, 237\u0026ndash;272. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"pediatric-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pnep","sideBox":"Learn more about [Pediatric Nephrology](http://link.springer.com/journal/467)","snPcode":"467","submissionUrl":"https://www.editorialmanager.com/pnep/default2.aspx","title":"Pediatric Nephrology","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Pediatric, Caregiver Burden, Kidney Transplant, Hemodialysis, Peritoneal dialysis","lastPublishedDoi":"10.21203/rs.3.rs-4804786/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4804786/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eWhile the increased burden on the caregivers of children and adolescents with kidney disease is described, the full scope of this burden remains unrecognized and unquantified. The Pediatric Renal Caregiver Burden Scale (PR-CBS) is a validated tool that evaluates caregiver burden in this population.\u003c/p\u003e\u003ch2\u003eObjective\u003c/h2\u003e \u003cp\u003eTo assess caregiver burden in pediatric kidney failure at a tertiary center pediatric hospital pre-kidney transplant (KT) on dialysis, early post-KT (30 days to 364 days), and late post-KT (\u0026gt;\u0026thinsp;1 year). We also aimed to demonstrate the feasibility of a translated PR-CBS among Spanish-speaking caregivers.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eIn this cross-sectional study, caregivers were approached during routine clinic visits to complete a hard copy of the PR-CBS independently. Total PR-CBS scores (ranging 51 to 255) and mean domain scores (ranging 1 to 5) were calculated with higher scores reflecting increased burden. Descriptive statistics and T-tests were performed to assess differences between caregivers of children on dialysis versus caregivers of children who received a transplant.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eOf the 30 caregivers approached, 26 consented: 5 of children receiving dialysis and 21 post-transplant. Participant survey completion was 100%. Total burden score was higher for caregivers of children on dialysis than after transplant, but not significantly (160 vs 117, P\u0026thinsp;=\u0026thinsp;0.09). The mean score for every domain in the PR-CBS was higher for caregivers of children on dialysis with significant differences in family life and caregiver identity (respectively, p\u0026thinsp;=\u0026thinsp;0.04 and p\u0026thinsp;=\u0026thinsp;0.03). PR-CBS scores did not differ across demographics. Four surveys were completed in Spanish; no significant difference was found between those completed in Spanish and English.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e \u003cp\u003eCaregivers of children with kidney failure experience high levels of burden. While a small sample size limited our ability to achieve significance, there was a trend for higher burden scores among caregivers of children on dialysis compared to those caring for children after transplant. This study highlights an oft-ignored need for targeted interventions to enhance quality of life for children with kidney failure and their families. Further, a larger, multi-center, adequately powered study is needed to further assess the degree of burden in this population.\u003c/p\u003e","manuscriptTitle":"Assessing Burden Among Caregivers of Pediatric Dialysis and Kidney Transplant Patients","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-09-02 13:38:46","doi":"10.21203/rs.3.rs-4804786/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Major Revisions Needed","date":"2024-08-21T14:26:46+00:00","index":"","fulltext":""},{"type":"reviewerAgreed","content":"","date":"2024-07-26T22:01:55+00:00","index":0,"fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-07-26T20:36:15+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-26T17:24:57+00:00","index":"","fulltext":""},{"type":"submitted","content":"Pediatric Nephrology","date":"2024-07-25T22:16:39+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"pediatric-nephrology","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pnep","sideBox":"Learn more about [Pediatric Nephrology](http://link.springer.com/journal/467)","snPcode":"467","submissionUrl":"https://www.editorialmanager.com/pnep/default2.aspx","title":"Pediatric Nephrology","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"12b9263e-667f-4f4f-8970-ea242b6e6e2e","owner":[],"postedDate":"September 2nd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-02-10T16:08:01+00:00","versionOfRecord":{"articleIdentity":"rs-4804786","link":"https://doi.org/10.1007/s00467-025-06690-9","journal":{"identity":"pediatric-nephrology","isVorOnly":false,"title":"Pediatric Nephrology"},"publishedOn":"2025-02-03 15:57:36","publishedOnDateReadable":"February 3rd, 2025"},"versionCreatedAt":"2024-09-02 13:38:46","video":"","vorDoi":"10.1007/s00467-025-06690-9","vorDoiUrl":"https://doi.org/10.1007/s00467-025-06690-9","workflowStages":[]},"version":"v1","identity":"rs-4804786","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4804786","identity":"rs-4804786","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}