Health‐related quality of life among siblings of kidney transplant recipients

Abstract

Studies are increasingly recognizing health‐related quality of life (HRQOL) as a key pediatric outcome in both clinical and research settings and an essential health outcome measure to assess the effectiveness of medical treatment. However, it has not yet been studied among the healthy siblings of kidney transplant recipients. The aim of this study, therefore, is to examine HRQOL among this population. We asked the following three groups to complete a validated measure of HRQOL among children (KIDSCREEN‐52): siblings of children who had received kidney transplants (n = 50), kidney transplant recipients (n = 43), and a healthy control group (n = 84). We found that siblings of kidney transplant patients exhibited lower scores for financial resources and autonomy than kidney transplant recipients. They also served lower on physical well‐being, financial resources, autonomy, and parent relations/home life than the control group. However, they scored higher on social acceptance than kidney transplant recipients. Our study underscores the importance of assessing HRQOL in families including a child diagnosed with a chronic illness. Siblings require social and psychological support to promote coping and adaptation.

A scoping review of the experiences and well-being of siblings of children with chronic kidney disease: implications for practice and research

“…Findings from two studies found that siblings were not significantly more anxious in comparison to clinical norms on the Spence Children's Anxiety Scale [4] and did not demonstrate significantly more behavioral problems at school than a control group of same age peers as reported by teachers using a behavioral rating scale [13]. In contrast, a more recent study that utilized a standardized self-report health-related quality of life measure (KIDSCREEN-54) which assessed ten dimensions found that siblings reported significantly lower autonomy (opportunities to create leisure and social time) and financial resources (perceptions of their own financial resources, such as enough money to do the same activities as their friends), but higher social acceptance (feeling less rejected by peers) in comparison to children with CKD [14]. In comparison to controls, siblings reported lower physical well-being (level of physical activity, energy and fitness), lower autonomy, lower parent relations and home life (quality of parent-child relationships and atmosphere at home), and lower financial resources [14].…”

“…The eight selected studies included two quantitative studies [13,14], five qualitative studies [15][16][17][18][19] and one mixedmethods study [4] that were published in four countries. Most (75%) but not all studies included information obtained directly from siblings; three were published by the same research team with overlap in participants.…”

“…Other issues were addressed by one type of study only. For instance, siblings' perceptions of their personal financial resources, social acceptance by peers, and perceptions of their physical well-being, such as energy and physical activity level, were addressed using quantitative methods only [14]. The quality of sibling relationships including the brother or sister with CKD, as well as with other siblings in the household, was addressed by qualitative methods only.…”

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

“…The burdens associated with pediatric CKD reach beyond the patient and affect others, including siblings and parents. Siblings of kidney transplant recipients demonstrate worse physical well-being and lower scores on financial-resource dimensions of quality-of-life measures than healthy controls (43). Siblings of children with CKD report anxiety around their siblings' medical needs, and frustration with limitations in their own lives (44).…”

Palliative Care Training in Pediatric Nephrology Fellowship: A Cross-Sectional Survey

“…7 These burdens extend to siblings and caregivers and evolve after kidney transplant. 17–23 Integration of primary palliative care (PC) within nephrology care offers an opportunity to alleviate these burdens of children with CKD and their families. 24…”