Improved Quality of Life in Children and Families following Enrollment in a Pediatric Palliative Care Program: A Prospective Cohort Study

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Abstract

Background/Objectives: Pediatric palliative care seeks to relieve suffering and im-33 prove the quality of life of children with severe conditions and their families. This pro-34 spective cohort study assessed changes in quality of life following enrollment in a pediat-35 ric palliative care program at a tertiary care center in Mexico and explored factors associ-36 ated with these changes. 37 Methods: Children with life-limiting or severe disabling conditions were followed 38 at baseline, 3 months, and 6 months. Quality of life was measured using the Pediatric 39 Quality of Life Inventory (PedsQL™) Cancer Module for oncologic patients and the Ped-40 sQL™ Family Impact Module for all families. Results: A total of 166 families completed the Family Impact Module questionnaires, 42 and 116 oncologic patients completed the Cancer Module. Mean children’s PedsQL Can-43 cer Module scores improved from 58.9 to 77.9, and family scores improved from 60.1 to 44 78.8 over six months (both p < 0.001). Families of oncologic patients and those residing 45 outside the Mexico City metropolitan area had lower baseline scores (adjusted differences 46 −9.84, 95% CI: −15.9 to −3.77; and −6.9, 95% CI: −12.38 to −1.44, respectively); however, the 47 latter group showed greater improvement over time. Survival varied by diagnosis, with 48 longer survival observed in children with neurologic or intracranial conditions. 49 Conclusions: The quality of life of families and of oncologic pediatric patients im-50 proved after enrollment in a specialist pediatric palliative care program in a middle-in-51 come setting. Equitable access should be ensured for families affected by chronic condi-52 tions, particularly those living beyond major urban areas.

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