Background/Purpose:
Adolescents with chronic health disease face a variety of physical and psychological challenges. Adolescents with rheumatologic conditions vary with regard to their physical, emotional, and functional health outcomes, such as quality of life. The purpose of this project was to evaluate health-related quality of life (HRQOL) in adolescents with rheumatic disease. In addition, an examination of agreement between adolescent and parent-report of HRQOL was completed.
Methods:
Adolescents and their parents participated in concurrent rheumatology support groups focused on psychoeducation, medical management, and quality of life. The sample consists of 38 adolescent (11-20 years)/parent pairs. Prior to attending the support/education group one parent and their adolescent completed self-reports of HRQOL. Measures of interest included a demographic questionnaire and the Simple Measure of Impact of Illness or Lupus Erythematous in Youngsters© (SMI-ILY© – SMILEY©) for parents and adolescents. This tool evaluates perception of overall quality of life, current illness and four individual domains: effect on self, burden of illness, social impact, and limitations of illness. Scores are calculated into a percentile score for each domain, with a higher score indicating greater HRQOL.
Results:
65.8% were Latino/Hispanic and 34.3% reported other (Asian, Asian/pacific, Asian pacific-islander black or white/non-Latino). Mothers represented 69.4%, fathers 22.2% and other 8.3%. Gender of the adolescent was 82.4% female.
Adolescents reported functioning above average quality of life in the domains of effect on self (61.26%) and social impact (73.02%). Two domains demonstrated a moderate impact on HRQOL in the domains of burden of illness (51.73%) and limitations (54.27%). Parent-report reflected similar responses being slightly lower in all domains reflecting the effect on self (58%), social impact (66.97%), burden of illness (47.59%) and limitations (52.76%).
The Wilks’ Lambda distribution was used and no significant differences were found between adolescent and parent ratings. Additionally, there was no significant corelation between the parent and adolescent-reports on all domains and total score of the SMI-ILY© – SMILEY©.
Conclusion:
Adolescents and their parents enrolled in a support/education program reported moderate to moderately high levels of self and social support. Of interest is the consistent burden of illness and limitations reported by adolescent with rheumatic disease and their parents. The findings are consistent with other literature supporting the effects of pediatric chronic health disease on HRQOL. While similar trends were reported across all domains of HRQOL, measures of agreement were not statistically significant. Information regarding the effects of rheumatic disease on the four domains lend further support for interventions focused on the direct burden of illness and limitations caused by the patient’s disease. Future investigations should focus on maintaining the impact of rheumatic disease on self and social support and focus on interventions for specific aspects of burden of illness and disease specific limitations.
Disclosure:
S. J. Watcher,
None;
M. Sepkowitz,
None;
S. M. Radhakrishna,
None;
A. Ramanathan,
None;
L. Morasso,
None;
J. Chang,
None;
J. I. Gold,
None.
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/health-related-quality-of-life-in-adolescents-with-rheumatic-disease/