EMOTIONAL REPERCUSSIONS AND QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS UNDERGOING HEMODIALYSIS OR AFTER KIDNEY TRANSPLANTATION

ABSTRACT Objective: To investigate the emotional repercussions and quality of life (QOL) associated with end-stage kidney disease (ESKD) in children and adolescents undergoing hemodialysis or a kidney transplant (TX). Methods: We conducted a quantitative-qualitative study. 48 children and adolescents with ESKD were interviewed; half of them underwent hemodialysis treatment, and the other half had a kidney transplantation. Their respective 48 caregivers also participated in the study. The questionnaire involved both the Pediatric Quality of Life Inventory and a thematic story-drawing tool. An analysis of the QOL questionnaire’s results was done by comparing the sum of points between groups and the theme-based story-drawing consisted of interpreting the data contained in the material using Freudian and Lacanian theories. Results: In the QOL questionnaires, the total score was higher in the transplanted patients and in their caregivers, suggesting a perception of better QOL after kidney transplantation. In the specific aspects of the questionnaire, physical capacity was considered superior by children who underwent transplants and their caregivers. There were no differences between the groups in the emotional, social and school aspects. However, the caregivers of the patients who had a transplant perceived a significant difference in QOL in the school aspect. In the thematic story-drawings, emotional suffering in the two analyzed groups was evidenced regardless of the treatment. Conclusions: Despite the questionnaire results suggesting that transplantation does improve some aspects of QOL, there were no differences observed between kidney replacement therapies regarding the emotional repercussion of chronic kidney disease.

[1]  P. Vidal,et al.  Psicanálise e hospital , 2020, Revista da Sociedade Brasileira de Psicologia Hospitalar.

[2]  C. Fernandes Quality of life of children with kidney disease , 2017 .

[3]  F. Kleinclauss,et al.  Insuffisance rénale chronique et transplantation rénale , 2016 .

[4]  H. Jalanko,et al.  Long-term effects of paediatric kidney transplantation , 2016, Nature Reviews Nephrology.

[5]  F. Kleinclauss,et al.  [Chronic kidney disease and kidney transplantation]. , 2016, Progres en urologie : journal de l'Association francaise d'urologie et de la Societe francaise d'urologie.

[6]  A. Ferraro,et al.  Reliability of the Brazilian version of the PedsQL - ESDR questionnaire to evaluate quality of life of children and adolescents. , 2015, Jornal brasileiro de nefrologia : 'orgao oficial de Sociedades Brasileira e Latino-Americana de Nefrologia.

[7]  M. D. C. Duarte,et al.  Impact of chronic kidney disease on quality of life, lung function, and functional capacity. , 2014, Jornal de pediatria.

[8]  Maria Fernanda Cabral Kourrouski,et al.  Crianças e adolescentes em hemodiálise: atributos associados à qualidade de vida , 2014 .

[9]  J. Craig,et al.  Thematic synthesis of qualitative studies on patient and caregiver perspectives on end-of-life care in CKD. , 2014, American journal of kidney diseases : the official journal of the National Kidney Foundation.

[10]  L. Ceretta,et al.  The hemodialysis of everyday life in chronic kidney patients , 2012 .

[11]  D. Nicholas,et al.  The Lived Experiences of Children and Adolescents With End-Stage Renal Disease , 2011, Qualitative health research.

[12]  Rozana Mesquita Ciconelli,et al.  Qualidade de vida de crianças e adolescentes de São Paulo: confiabilidade e validade da versão brasileira do questionário genérico Pediatric Quality of Life InventoryTM versão 4.0 , 2008 .

[13]  Shun-liang Yang,et al.  The long‐term outcomes of pediatric kidney transplantation: A single‐centre experience in China , 2008, Pediatric transplantation.

[14]  Alison Lowe,et al.  Experiences of Parents Who Have Children With Chronic Kidney Disease: A Systematic Review of Qualitative Studies , 2008, Pediatrics.

[15]  J. Varni,et al.  Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales. , 2008, Jornal de pediatria.

[16]  J. Magee,et al.  Psychological Functioning, Nonadherence and Health Outcomes After Pediatric Liver Transplantation , 2007, American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons.

[17]  Safaʼa Al-Arabi Quality of life: subjective descriptions of challenges to patients with end stage renal disease. , 2006, Nephrology nursing journal : journal of the American Nephrology Nurses' Association.

[18]  S. Goldstein,et al.  Quality of life for children with chronic kidney disease. , 2006, Seminars in nephrology.

[19]  A. Riley,et al.  Assessing health status and health care utilization in adolescents with chronic kidney disease. , 2005, Journal of the American Society of Nephrology : JASN.

[20]  P. White Access to health care: health insurance considerations for young adults with special health care needs/disabilities. , 2002, Pediatrics.

[21]  T. M. J. Aiello-Vaisberg Encontro com a loucura: transicionalidade e ensino de psicopatologia. , 1999 .