Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study

Francis, Anna; Didsbury, Madeleine; Zwieten, Anita van; Chen, Kerry; James, Laura; Kim, Siah; Howard, Kirsten; Williams, Gabrielle; Treidel, Omri Bahat; McTaggart, Steven; Walker, Amanda; Mackie, Fiona; Kara, Tonya; Nassar, Natasha; Teixeira‐Pinto, Armando; Tong, Allison; Johnson, David W.; Craig, Jonathan C.; Wong, Germaine

doi:10.1136/archdischild-2018-314934

Cited by 68 publications

(52 citation statements)

References 29 publications

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“…3 While all transplant recipients had a functioning allograft at time of assessments, we were unable to assess for incidence of rejection or other concurrent complications that may have increased burden of disease and impacted factors such as pain, which have been shown to be associated with HRQoL in this population. 18,19…”

Section: Discussionmentioning

confidence: 99%

“…In contrast, data from studies utilizing the disease‐specific PedsQL 3.0 ESRD have revealed persistence of problems for transplant recipients including concerns about physical appearance and problems attributed to kidney issues (eg “I am embarrassed that my medicines will change the way I look”) and indicate a lack of clear improvement in HRQoL following kidney transplant . While other quantitative studies show parents of transplant recipients score their child's HRQoL higher than parents of children on dialysis, there has not been a consistent difference noted between children's reported HRQoL between dialysis and transplantation . Further, these studies did not include children in the first 6 months after transplant, which is a time period when significant changes in HRQoL could be expected to occur .…”

Section: Introductionmentioning

confidence: 94%

“…2,[9][10][11] While other quantitative studies show parents of transplant recipients score their child's HRQoL higher than parents of children on dialysis, there has not been a consistent difference noted between children's reported HRQoL between dialysis and transplantation. [12][13][14][15][16][17][18][19] Further, these studies did not include children in the first 6 months after transplant, which is a time period when significant changes in HRQoL could be expected to occur. 5,8 It may be especially important to focus on early HRQoL outcomes as childhood HRQoL has been shown to be associated with long-term HRQoL in at least one cohort of pediatric kidney recipients.…”

Section: Introductionmentioning

confidence: 99%

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Health‐related quality of life changes following renal transplantation in children

Wightman

Bradford²,

Smith

2018

Pediatric Transplantation

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Background Studies of HRQoL after kidney transplant have yielded conflicting results. We sought to assess the impact of kidney transplant on HRQoL. Methods We performed a retrospective study using the PedsQL3.0ESRD module during dialysis and at 3 and 12 months following kidney transplant in 56 recipients. For the entire cohort, we described HRQoL scores at each time point and used ANOVA models to test for associations between demographic and transplant‐related factors and post‐transplant scores. We used linear mixed models to investigate interactions between transplant and demographic and transplant‐related factors and to estimate differences between mean pre‐ and post‐transplant scores. Longitudinal changes in HRQoL were assessed by t test. Results We found increases in all mean total scores, including subscales, at each assessed time period from dialysis to 3 months post‐transplant to 12 months post‐transplant. Post‐transplant total scores did not differ by gender, race, proximity to hospital, allograft source, or dialysis modality, but did differ by recipient age. Among participants with both pre‐ and post‐transplant observations, total scores increased for both recipients and parent‐proxies. Conclusions This study affirms the association between kidney transplant and improvement in HRQoL in the first year following transplant. Future research should further explore outcomes over the longer‐term and factors contributing to HRQoL among this population.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 94%

Section: Introductionmentioning

confidence: 99%

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Health‐related quality of life changes following renal transplantation in children

Wightman

Bradford²,

Smith

2018

Pediatric Transplantation

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“…Future prospects regarding schooling and further education are poor if they are in need of dialysis—which is time consuming and often produces side effects. Significantly reduced quality of life is found among children with ESKD (Francis et al ), and in health‐related quality of life at all stages of chronic kidney disease (CKD) (Moreira et al ; Splinter et al ).…”

Section: Literature Reviewmentioning

confidence: 99%

Everyday life experiences in families with a child with kidney disease

Agerskov

Thiesson

Pedersen

2019

Journal of Renal Care

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SUMMARY Background Chronic kidney disease in children is a complex medical and psychosocial disease with factors that differ from the adult disease in significant ways. Among parents, there is uncertainty about disease progression and lack of confidence in caring for the child. The disease has an impact on the emotional and social well‐being of the whole family. Objectives To investigate everyday life experiences from the perspectives of members of a family that includes a child with end stage renal disease. Method The study took a phenomenological‐hermeneutical approach. Semi‐structured individual interviews were conducted with seven fathers, seven mothers, five children with kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading, structural analysis, critical interpretation and discussion. Results It was significant that everyday life and caring for the child were structured around parents’ energy reserves. The disease left its mark and changes to daily life caused anxiety, especially for siblings. The search for normalcy was significant and, although the families coped with conditions around the disease, it could be a challenge. Conclusion Family members feel vulnerable and concerned and need attention, support and care. Limitations in everyday life cause a dilemma, and the well‐being of one family member has an impact on the well‐being of the family as a whole. Implications for practice: Health care professionals should focus on the impact of the family's experiences and needs, and the parents’ role in family relationships, to support the entire family unit.

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“…Children with ESKD need renal replacement therapy or transplantation to survive, and their death rate remains 30-fold higher than for healthy children (Chong et al, 2017;McDonald & Craig, 2004). Thus, children with ESKD face lifelong increases in morbidity and mortality, together with reduced quality of life (Francis et al, 2019) and health-related quality of life (Moreira, Bouissou Morais Soares, Teixeira, Simões e Silva, & Kummer, 2015;Splinter et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

The significance of relationships and dynamics in families with a child with end‐stage kidney disease: A qualitative study

Agerskov

Thiesson

Pedersen

2020

Journal of Clinical Nursing

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Aim and objectives To explore experiences and the significance of relationships and dynamics among family members living with a child with severe kidney disease. Background Chronic kidney disease (CKD) in children is often incurable, leading to irreversible kidney damage. End‐stage kidney failure in a child impacts daily life and routines, requiring significant social adaptation for all family members. However, little is known about how individual family members experience relationships, interactions and dynamics within the family. Design A qualitative exploratory study taking a phenomenological–hermeneutic approach. Method Data were collected through semi‐structured individual interviews with seven fathers, seven mothers, five children with end‐stage kidney disease and five siblings. The data were analysed using Ricoeur's theory of narrative and interpretation, on three levels: naïve reading; structural analysis; and critical interpretation and discussion. The Consolidated Criteria for Reporting Qualitative Research checklist has been used (see Supporting Information). Results All family members experienced relationships within and outside the family as a significant part of everyday life. The well‐being of the sick child had an impact on the dynamics and emotional well‐being of all family members. Siblings were in need of support; however, being fair could be challenging for parents. Conclusion CKD in a child has an impact on family dynamics and on the relationships between family members. Family members are vulnerable and in need of practical help and emotional support from close relatives, friends, health professionals and other individuals around them. Relevance to clinical practice In clinical practice, the ability to reflect on, or interpret, a range of situations by initiating a dialogue is essential to shape both an individual perspective and the perspective of the entire family unit.

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Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study

Abstract: The overall QoL and domains such as pain and emotion are substantially worse in children on dialysis compared with earlier stage CKD and those with kidney transplants.

Cited by 68 publications

References 29 publications

Health‐related quality of life changes following renal transplantation in children

Health‐related quality of life changes following renal transplantation in children

Everyday life experiences in families with a child with kidney disease

The significance of relationships and dynamics in families with a child with end‐stage kidney disease: A qualitative study

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