Abstract
PurposeObjectives of this longitudinal study were to examine 3-year trajectories of global perceived quality of life (QOL) for youth with chronic health conditions, as obtained from youth and parent reports, and to identify personal and environmental factors associated with the trajectory groups for each perspective.MethodsYouth with various chronic conditions aged 11–17 years and one of their parents were recruited from eight children’s treatment centers. Latent class growth analysis was used to investigate perceived QOL trajectories (separately for youth and parent perspectives) over a 3-year period (four data collection time points spaced 12 months apart). Multinomial logistic regression was employed to identify factors associated with these trajectories.ResultsA total of 439 youth and one of their parents participated at baseline, and 302 (69 %) of those youth/parent dyads completed all four data collection time points. Two QOL trajectories were identified for the youth analysis: ‘high and stable’ (85.7 %) and ‘moderate/low and stable’ (14.3 %), while three trajectories were found for the parent analysis: ‘high and stable’ (35.7 %), ‘moderate and stable’ (46.6 %), and ‘moderate/low and stable’ (17.7 %). Relative to the ‘high and stable’ groups, youth with more reported pain/other physical symptoms, emotional symptoms, and home/community barriers were more likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups. Also, youth with higher reported self-determination, spirituality, family social support, family functioning, school productivity/engagement, and school belongingness/safety were less likely to be in the ‘moderate and stable’ or ‘moderate/low and stable’ groups, compared to the ‘high and stable’ groups.ConclusionFindings suggest that youth with chronic conditions experience stable global perceived QOL across time, but that some individuals maintain stability at moderate to moderate/low levels which is related to ongoing personal and environmental influences. Potential benefits of universal strategies and programs to safeguard resilience for all youth and targeted interventions to optimize certain youths’ global perceived QOL are indicated.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1353-z) contains supplementary material, which is available to authorized users.
Highlights
IntroductionOver the last few decades, quality of life (QOL) research for children and youth with chronic health conditions (i.e., long-term diseases, disorders, injuries, and related health problems [1, 2]) has been increasing and evolving
Over the last few decades, quality of life (QOL) research for children and youth with chronic health conditions has been increasing and evolving
Given the clear need to understand patterns in global perceived QOL over time for youth with chronic conditions, this research used the longitudinal data gathered from both youth and one of their parents from the above-mentioned study by McDougall et al [24] to assess any change in this outcome for youth and to identify key factors associated with that change over a 3-year follow-up
Summary
Over the last few decades, quality of life (QOL) research for children and youth with chronic health conditions (i.e., long-term diseases, disorders, injuries, and related health problems [1, 2]) has been increasing and evolving. The standard approach in this area has been to study QOL as a health-related, multidimensional concept, mainly involving family and service provider reports of children’s physical, psychological, and social functional status [3] This concept of health-related QOL (HRQOL) emerged partially due to the broader definition of health proposed by the World Health Organization 70 years ago, which describes health as a ‘state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity’ A contemporary review [6] of patient-reported outcome measures concluded many QOL instruments were developed before clarification of conceptual differences between functioning, disability, health, and QOL was provided by the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) [1], and the WHO-QOL Group [7] This group defined QOL as, ‘individuals’ perceptions of their position in life in the context of culture and value systems in which they live, and in relation to their goals, expectations, standards, and concerns’ WHO’s Regional Office of Europe [11] recommends that countries include a global life satisfaction measure in national surveys, indicating WHO’s support for this concept as relevant to people’s well-being and for societal improvement
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