Dataset Information

Three-year trajectories of global perceived quality of life for youth with chronic health conditions.

ABSTRACT:

Purpose

Objectives 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.

Methods

Youth 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.

Results

A 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.

Conclusion

Findings 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.

SUBMITTER: McDougall J

PROVIDER: S-EPMC5102979 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundResidential youth care (RYC) institutions aim to provide care and stability for vulnerable adolescents with several previous and present challenges, such as disrupted attachments, wide-ranging adverse childhood experiences, mental health problems, and poor quality of life (QoL). To the best of our knowledge, the present study is the first to provide knowledge of the associations between perceived social support and QoL and to explore the potential moderating effect of perceived social support on QoL for adolescents who have experienced maltreatment and polyvictimization.MethodsAll RYC institutions with adolescents between the ages 12-23 in Norway were asked to participate in the study. A total of 86 institutions housing 601 adolescents accepted the invitation, from which 400 adolescents volunteered to participate. The Child and Adolescent Psychiatric Interview was used to gather information on maltreatment histories and degree of victimization; the Kinder Lebensqualität Fragebogen was used to measure QoL through several domains (overall QoL, physical well-being, emotional well-being, and self-esteem); and the Social Support Questionnaire was used to measure perceived social support. Linear regression and independent samples t-test were used to study the associations between perceived social support and QoL as well as the potential moderating effect of perceived social support in the association between maltreatment history and QoL.ResultsPerceived social support was positively associated with QoL for both girls and boys, with domain-specific findings. A higher number of different types of support persons was associated with overall QoL, emotional well-being, and self-esteem for boys, but only with self-esteem for girls. Individual social support from RYC staff and friends was associated with higher QoL for girls. However, perceived social support did not moderate the association between maltreatment history and reduced QoL for either sex.ConclusionsThis study emphasizes the importance of maintaining social support networks for adolescents living in RYC, the crucial contribution of RYC staff in facilitating social support, and the potential value of social skills training for these vulnerable adolescents. Furthermore, a wider range of initiatives beyond social support must be carried out to increase QoL among adolescents with major maltreatment and polyvictimization experiences.

Project description:Overview. The Centers for Disease Control and Prevention (CDC) health-related quality of life (HRQoL) indicators are widely used in the general population to determine the burden of disease, identify health needs, and direct public health policy. These indicators also allow the burden of illness to be compared across different diseases. Although Lyme disease has recently been acknowledged as a major health threat in the USA with more than 300,000 new cases per year, no comprehensive assessment of the health burden of this tickborne disease is available. This study assesses the HRQoL of patients with chronic Lyme disease (CLD) and compares the severity of CLD to other chronic conditions. Methods. Of 5,357 subjects who responded to an online survey, 3,090 were selected for the study. Respondents were characterized as having CLD if they were clinically diagnosed with Lyme disease and had persisting symptoms lasting more than 6 months following antibiotic treatment. HRQoL of CLD patients was assessed using the CDC 9-item metric. The HRQoL analysis for CLD was compared to published analyses for the general population and other chronic illnesses using standard statistical methods. Results. Compared to the general population and patients with other chronic diseases reviewed here, patients with CLD reported significantly lower health quality status, more bad mental and physical health days, a significant symptom disease burden, and greater activity limitations. They also reported impairment in their ability to work, increased utilization of healthcare services, and greater out of pocket medical costs. Conclusions. CLD patients have significantly impaired HRQoL and greater healthcare utilization compared to the general population and patients with other chronic diseases. The heavy burden of illness associated with CLD highlights the need for earlier diagnosis and innovative treatment approaches that may reduce the burden of illness and concomitant costs posed by this illness.

Project description:BackgroundMeasurement of health utilities is required for economic evaluations. Few studies have evaluated health utilities for rare conditions; even fewer have incorporated disutility that may be experienced by caregivers. This study aimed to (1) estimate health utilities for three rare conditions currently recommended for newborn screening at the state or federal level, and (2) estimate the disutility, or spillover, experienced by parents of patients diagnosed with a rare, heritable disorder.MethodsA stated-preference survey using a time trade-off approach elicited health utilities for Krabbe disease, phenylketonuria, and Pompe disease at varying stages (mild, moderate, severe) and onset of disease symptoms (infancy, childhood, and adulthood). We recruited respondents from a nationally representative community sample (n = 862). Respondents valued disease specific health states in three consecutive question frames: (1) adult health state (> = 18 years of age), (2) child health state (< 18 years of age), and (3) as a parent of a child with a condition (parent spillover state). Corresponding mean utilities were calculated for plausible disease states in adulthood and childhood. Mean disutility was estimated for parental spillover. Predictors of utilities were evaluated using a negative binomial regression model.ResultsMore severe conditions and infant health states received lower estimated utility and greater estimated disutility among parents. Conditions with the lowest estimated health utilities were severe infantile Pompe disease (0.40, CI: 0.34-0.46) and infantile Krabbe disease (0.37, CI: 0.32-0.43). Disutility was evident for all conditions evaluated (range: 0.07-0.19).ConclusionsRare childhood conditions are associated with substantial estimated losses in quality of life. Evidence of disutility among parents further warrants the inclusion of spillover effects in cost-effectiveness analyses. Continued research is needed to assess and measure the effects of childhood disease from a family perspective.