Quality of life and mental health status in caregivers of pediatric patients with nephropathic cystinosis
González, Karina (Hospital Universitari Vall d'Hebron)
Eixarch, Teresa (Hospital Universitari Vall d'Hebron)
Nuñez, Laura (Hospital Universitari Vall d'Hebron)
Ariceta Iraola, Gema (Universitat Autònoma de Barcelona. Departament de Pediatria, Obstetrícia i Ginecologia i de Medicina Preventiva i Salut Pública)

Data:	2024
Resum:	There are few studies assessing psychological burden and quality of life (QoL) in caregivers of pediatric patients with nephropathic cystinosis, a severe chronic disease. This observational, single-center study aimed to explore the levels of anxiety, depression, care burden, and QoL status in caregivers of patients with nephropathic cystinosis. The Hospital Anxiety and Depression Scale (HADS), the Zarit Caregiver Burden Scale, and the Short Form-36 (SF-36) were administered to caregivers of pediatric patients with nephropathic cystinosis. Nine caregivers of pediatric patients with nephropathic cystinosis participated in the study (6 boys and 3 girls; mean age, 12. 6 ± 4. 2 years). All participating caregivers were the patient's mothers. Of the 9 caregivers, 6 showed anxiety/depression and 4 severe care burden. Overall, SF-36 QoL domains with a worse perception by caregivers were 'general health' and 'health change over time'. Mothers without depression/anxiety and low care burden had better QoL perception (p = 0. 02). All caregivers with high care burden showed anxiety/depression. In our study cohort, caregivers of pediatric patients with nephropathic cystinosis showed high levels of anxiety/depression, high care burden, and impaired QoL, highlighting the importance of detecting psycho-social issues to implement strategies that relieve family stress and improve coping strategies.
Ajuts:	Asociación Cistinosis España Asociación Cistinosis España
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Nephropathic cystinosis ; Health-related quality of life ; Caregivers ; Anxiety ; Depression
Publicat a:	Orphanet journal of rare diseases, Vol. 19 (november 2024) , ISSN 1750-1172

DOI: 10.1186/s13023-024-03417-1
PMID: 39501350

6 p, 1.7 MB

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