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

TL;DR

A pediatric palliative care program in Mexico City significantly improved the quality of life for children and their families, especially those from outside the city.

Contribution

Demonstrates that pediatric palliative care improves quality of life in middle-income settings, particularly for families with limited local access to care.

Findings

Children's and families' quality of life scores improved significantly over six months (p < 0.001).

Families outside Mexico City had lower baseline scores but greater improvement over time.

Longer survival was observed in children with neurologic or intracranial conditions.

Abstract

This study demonstrates significant improvements in the quality of life of both children and their families following enrollment in a pediatric palliative care program at a public tertiary hospital in Mexico City.

Families living outside the Mexico City metropolitan area reported lower baseline quality of life but experienced greater improvement over time.

Pediatric palliative care services can benefit families across a range of clinical and social contexts, including those with limited access to local care.

These findings support the expansion of pediatric palliative care programs in resource-constrained settings.

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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