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Improved Quality of Life in Children and Families Following Enrollment in a Pediatric Palliative Care Program: A
Jéssica H Guadarrama-Orozco1, María G Mendoza-Martínez1, Sergio E Bautista-Téllez2
1Hospital Infantil de México Federico Gómez, Palliative Care Service, Dr. Márquez, 162, Doctores, Mexico City 06720, Mexico.
Abstract:
Background/Objectives: Pediatric palliative care seeks to relieve suffering and improve the quality of life of children with severe conditions and their families. This prospective cohort study assessed changes in quality of life following enrollment in a pediatric palliative care program at a tertiary care center in Mexico and explored factors associated with these changes. Methods: Children with life-limiting or severe disabling conditions were followed at baseline, 3 months, and 6 months. Quality of life was measured using the Pediatric Quality of Life Inventory (PedsQL™) Cancer Module for oncologic patients and the PedsQL™ Family Impact Module for all families. Results: A total of 166 families completed the Family Impact Module questionnaires, and 116 oncologic patients completed the Cancer Module. Mean children's PedsQL Cancer Module scores improved from 58.9 to 77.9, and family scores improved from 60.1 to 78.8 over six months (both p < 0.001). Families of oncologic patients and those residing outside the Mexico City metropolitan area had lower baseline scores (adjusted differences -9.84, 95% CI: -15.9 to -3.77; and -6.9, 95% CI: -12.38 to -1.44, respectively); however, the latter group showed a greater rate of improvement over time, contrary to our initial hypothesis-survival varied by diagnosis, with longer survival observed in children with neurologic or intracranial conditions. Conclusions: The quality of life of families and pediatric oncologic patients showed improvement over time following enrollment in a specialist pediatric palliative care program in a middle-income setting. Equitable access should be ensured for families affected by chronic conditions, particularly those living beyond major urban areas.
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