Ferah Genel, Turkey
Behçet Uz Children's Hospital dept of Pediatric ImmunologyPresenter of 1 Presentation
THE EFFECT OF HOME-BASED TREATMENT WITH IMMUNOGLOBULIN ON HEALTH QUALITY OF LIFE AND CAREGIVER BURDEN IN PATIENTS WITH PRIMARY IMMUNODEFICIENCIES
Abstract
Background and Aims
It was aimed to determine the effect of home-based treatment with immunoglobulin on the quality of life of the children with primary immunodeficiencies (PID) and the caregiving burden in their families.
Methods
The patient population consisted of 34 patients who were receiving subcutaneous immunoglobulin (SCIG). Three patients were excluded and nine patients returned to intravenous route in follow-up. “Pediatric Quality of Life Inventory” was applied during intravenous immunoglobulin (IVIG) and SCIG therapy phases to the patients and their parents and “Zarit Caregiver Burden Questionnaire” was applied to the parents of the twenty-two patients who continued with SCIG treatment.
Results
Fourteen boys and 8 girls, with a mean age of 150.0 ± 59.5 months completed the study. The most common diagnosis (50%) was common variable immunodeficiency. When the quality of life scores were evaluated, it was seen that the emotional, school and psychosocial total scores on parent reports were significantly higher and the emotional, psychosocial total and general total scores on patient self reports were significantly higher in SCIG phase than in IVIG period. The total Zarit Caregiver Burden Questionnaire score was found to be lower in SCIG phase than in IVIG period (34.9±9.1 vs 42.8±15.7, p=0.009).
Conclusions
The home-based SCIG treatment option provides better quality of life in patients with PID and reduces the care burden of caregivers. In particular, SCIG treatment is a good alternative for cases with systemic side effects, vascular access problems and for families who have difficulties with transportation to the hospital.