PURPOSE:
To examine the relationship of physical activity (PA) and walking performance to QOL in ambulatory children with CP, as function is not consistently associated with QOL in this population.
METHODS:
A secondary analysis of a cross-sectional cohort of 128 ambulatory children with CP, ages 2.2–9.9 years and GM-FCS levels I–III, was employed. Individual multivariate regression models were developed for physical, psychosocial, and total domains of QOL as measured by the Pediatric Quality of Life Inventory (PedsQL) controlling for physical activity and walking performance, participation level and frequency, topography of CP, walking capacity, age, and satisfaction with participation.
RESULTS:
Physical, psychosocial and total QOL averaged 52.2, 60.9, and 56.5 respectively. PA was positively associated with physical (0.64, p < 0.01) and total QOL (0.54, p < 0.01). Walking performance was associated with physical QOL (0.16, p = 0.05), participation level was positively related to psychosocial (0.44, p < 0.01), and age negatively for all QOL domains (> −0.43, p < 0.01).
CONCLUSIONS:
Physical activity, walking performance, and level of participation in daily life are associated with varying domains of QOL. Future work should explore factors that influence the relationship of daily physical/walking activity and participation to QOL in children with ambulatory CP as they age.
Children with disabilities compose a substantial portion of admissions and bed-days in the pediatric intensive care unit (PICU) and often experience readmissions over time. Impacts of a PICU admission on post-discharge health status may be difficult to distinguish from pre-existing disability in this population. Efforts to standardize outcome measures used for children with disabilities may help identify morbidities associated with PICU hospitalizations. Although a scoping review of outcome measures to assess children after episodes of critical illness has recently been published, it is not known to what extent these measures are appropriate for use in children with disabilities. This limits our ability to effectively measure long-term outcomes following critical illness in this important patient population. Through mixed methodology of scoping review and multi-stakeholder consensus, we aimed to identify and describe instruments previously utilized for this purpose and to explore additional tools for consideration. This yielded 51 measures across a variety of domains that have been utilized in the PICU setting and may be appropriate for use in children with disabilities. We describe characteristics of these instruments, including the type of developmental domains assessed, availability of population data, validation and considerations regarding administration in children with disabilities, and ease of availability of the instrument to researchers. Additionally, we suggest needed alterations or accommodations for these instruments to augment their utility in these populations, and highlight areas for future instrument development.
Children with medical complexity (CMC) have chronic, multisystem health conditions, substantial health care needs, major functional limitations, and high resource use. They represent ,1% of US children yet account for more than one-third of total pediatric health care costs. Health care systems designed for typical children do not meet the unique needs of CMC. In this special article, we describe the experience of our Comprehensive Care Program for CMC in a pediatric tertiary care center, from its launch in 2007 to its present model. We review the literature, describe our collective lessons learned, and offer suggestions for future directions.
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