Illness-related parental stress and quality of life in children with kidney diseases

被引：5

作者：

De Bruyne, Elke ^{[1
]}

Willem, Lore ^{[2
]}

Van Hoeck, Koen ^{[3
]}

Reynaert, Sarah ^{[3
]}

Vankerckhove, Sylvie ^{[4
]}

Adams, Brigitte ^{[4
]}

Leroi, Stephanie ^{[5
]}

Collard, Laure ^{[5
]}

Michaux, Aline ^{[6
]}

Godefroid, Nathalie ^{[6
]}

Mekahli, Djalila ^{[2
]}

Knops, Noel ^{[2
]}

Eloot, Sunny ^{[7
]}

Raes, Ann ^{[8
]}

Walle, Johan Vande ^{[8
]}

Van Hoecke, Eline ^{[1
]}

Snauwaert, Evelien ^{[8
]}

Levtchenko, Elena ^{[2
]}

机构：

[1] Ghent Univ Hosp, Dept Pediat, Pediat Psychol, Ghent, Belgium

[2] Leuven Univ Hosp, Dept Child Nephrol & Organ Transplantat, Louvain, Belgium

[3] Antwerp Univ Hosp, Dept Pediat Nephrol, Edegem, Belgium

[4] Queen Fabiola Childrens Univ, Dept Pediat Nephrol, Hosp Brussels, Brussels, Belgium

[5] Hlth Grp CHC Liege, Dept Pediat Nephrol, CHC MontLegia, Liege, Belgium

[6] St Luc Brussels Univ Hosp, Dept Pediat Nephrol, Brussels, Belgium

[7] Ghent Univ Hosp, Dept Nephrol, Ghent, Belgium

[8] Ghent Univ Hosp, Dept Pediat Nephrol & Rheumatol, Ghent, Belgium

来源：

PEDIATRIC NEPHROLOGY | 2023年 / 38卷 / 08期

关键词：

Children; Kidney disease; Quality of life; Illness-related parental stress; Transplantation; Multicentric; STAGE RENAL-DISEASE; PEDIATRIC INVENTORY; ADOLESCENTS; CAREGIVERS; OUTCOMES; PATIENT; VERSION; ESRD; PART; CARE;

D O I：

10.1007/s00467-023-05911-3

中图分类号：

R72 [儿科学];

学科分类号：

100202 ;

摘要：

Background This cross-sectional study investigated quality of life (QoL) and illness-related parental stress in children with kidney diseases by (1) comparing mean levels of these two variables between several kidney disease categories; (2) exploring correlations between QoL and parental stress; and (3) describing which disease category reports lowest QoL and highest parental stress.Methods We included 295 patients with a kidney disease (0-18 years) and their parents, followed at 6 reference centers for pediatric nephrology. Children's QoL was assessed by the PedsQL (TM) 4.0 Generic Core Scales, and illness-related stress by the Pediatric Inventory for Parents. All patients were divided into 5 kidney disease categories according to the multidisciplinary care program criteria prescribed by the Belgian authorities: (1) structural kidney diseases, (2) tubulopathies and metabolic diseases, (3) nephrotic syndrome, (4) acquired diseases with proteinuria and hypertension, and (5) kidney transplantation.Results Child self-reports showed no differences in QoL between kidney disease categories, in contrast to parent proxy reports. Parents of transplant patients reported lower QoL in their child and more parental stress compared with the 4 non-transplant categories. QoL and parental stress were negatively correlated. Lowest QoL and highest parental stress scores were mainly found in transplant patients.Conclusions This study showed lower QoL and higher parental stress in pediatric transplant patients compared with non-transplants, based on parent reports. Higher parental stress is associated with worse QoL in the child. These results highlight the importance of multidisciplinary care for children with kidney diseases, with special attention to transplant patients and their parents.

引用

页码：2719 / 2731

页数：13

共 49 条

[21] Measuring health-related quality of life in children with ESRD: Performance of the generic and ESRD-Specific instrument of the pediatric quality of life inventory (PedsQL) [J].