Quality of Life Outcomes in Primary Caregivers of Children with Esophageal Atresia.
J Pediatr
; 238: 80-86.e3, 2021 Nov.
Article
en En
| MEDLINE
| ID: mdl-34329689
ABSTRACT
OBJECTIVE:
To investigate the quality of life (QoL) impact on primary caregivers of children with esophageal atresia. STUDYDESIGN:
We used a prospective cohort study design, inviting primary caregivers of children with esophageal atresia to complete the following questionnaires Parent Experience of Child Illness (PECI), Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, PROMIS Depression, 12-Item Short Form Survey (SF-12), and Pediatric Quality of Life Inventory (PedsQL). The PECI, PROMIS Anxiety and Depression, and SF-12 assessed caregiver QoL, and the PedsQL assessed patient QoL. Patients with Gross type E esophageal atresia served as controls.RESULTS:
The primary caregivers of 100 patients (64 males, 36 females; median age, 4.6 years; range, 3.5 months to 19.0 years) completed questionnaires. The majority (76 of 100) of patients had Gross type C esophageal atresia. A VACTERL (vertebral anomalies, anorectal malformation, cardiac anomalies, tracheoesophageal fistula, renal anomalies, limb anomalies) association was found in 30, ≥1 esophageal dilatation was performed in 57, and fundoplication was performed in 11/100. When stratified by esophageal atresia types, significant differences were found in 2 PECI subscales (unresolved sorrow/anger, P = .02; uncertainty, P = .02), in PROMIS Anxiety (P = .02), and in SF-12 mental health (P = .02) and mental component summary scores (P = .02). No significant differences were found for VACTERL association, nor esophageal dilatation. Requirement for fundoplication resulted in lower SF-12 general health score, and lower PedsQL social and physical functioning scores.CONCLUSIONS:
We have demonstrated that caring for a child with esophageal atresia and a previous requirement for fundoplication impacts caregiver QoL.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Atresia Esofágica
/
Carga del Cuidador
Tipo de estudio:
Observational_studies
/
Qualitative_research
/
Risk_factors_studies
Aspecto:
Patient_preference
Límite:
Adolescent
/
Child
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Child, preschool
/
Female
/
Humans
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Infant
/
Male
Idioma:
En
Revista:
J Pediatr
Año:
2021
Tipo del documento:
Article
País de afiliación:
Australia