Health Values in Adolescents with or without Inflammatory Bowel Disease (original) (raw)
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Health-related quality of life of youth with inflammatory bowel disease
Inflammatory Bowel Diseases, 2010
Background-This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. Method-One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs). Results-Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with lowest agreement in school and social functioning. Conclusions-Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL.
Strategies to improve quality of life in adolescents with inflammatory bowel disease
Inflammatory Bowel Diseases, 2009
Inflammatory bowel disease (IBD), which encompasses Crohn's disease (CD) and ulcerative colitis (UC), are chronic and debilitating conditions with unpredictable courses and complicated treatment. Pediatric IBD carries implications that extend beyond the health of the gastrointestinal tract. When these lifelong illnesses are diagnosed during adolescence, a critical developmental period, the transition to adulthood can be even more turbulent. Like other chronic diseases of childhood, patients with IBD are at risk for depression, anxiety, social isolation, and altered self-image, which can all negatively affect health-related quality of life (HRQOL). The review will draw from pertinent adult and pediatric literature about HRQOL over the past 10 years using a PubMed literature search to summarize instruments with which HRQOL is measured, and address factors that affect HRQOL in adolescents and young adults with IBD. Psychosocial interventions that have been utilized to improve quality of life in this population will also be covered. Identifying patients with impaired quality of life is of paramount importance, as is implementing strategies that may improve HRQOL, so that they may have an easier transition to adulthood while living with IBD.
Psychosocial burden of inflammatory bowel disease in adolescents and young adults
Internal Medicine Journal, 2020
BackgroundThis study examined the psychosocial burden of inflammatory bowel disease (IBD) in young people aged 15–25 years attending a tertiary specialist health centre for adolescents and young adults in Brisbane.AimsTo describe the impact of IBD on psychosocial well‐being in young people and to compare well‐being in the IBD cohort to well‐being among young people with other chronic conditions, with a view to identifying characteristics and challenges unique to those with IBD.MethodsYoung people with IBD provided demographic information and psychosocial data through a cross‐sectional self‐report survey. Psychosocial data included the Kessler Psychological Distress Scale, Perceived Stress Scale, Brief Illness Perception Questionnaire, World Health Organisation Well‐being Index, Paediatric Quality of Life Inventory, Short Quality of Life Questionnaire for IBD, Multidimensional Scale of Perceived Social Support, Connor Davidson Resilience Scale 2 and the Multidimensional Health Locus ...
Inflammatory Bowel Diseases, 2011
Background-Approximately 20-25% of all IBD cases have an onset in childhood or adolescence. Beyond disease severity, little is known regarding determinants of health-related quality of life (HRQOL) in this population. This study aimed to identify behavioral correlates of HRQOL and examine behavioral/emotional dysfunction (e.g., internalizing/externalizing symptoms) as the mechanism through which disease severity impacts HRQOL. Methods-62 adolescents (M = 15.47 years, SD = 1.42) with IBD (79% Crohn's disease) and their parents were recruited from one of two pediatric IBD specialty clinics located in the Midwest or Northeast region of the United States. Participants completed a demographic questionnaire, the Youth Self-Report version of the Child Behavior Checklist, and the IMPACT-III. Disease severity was calculated for Crohn's disease and ulcerative colitis using standardized measures. Results-Greater disease severity, externalizing symptoms, and internalizing symptoms were all independently associated with lower HRQOL. Furthermore, internalizing symptoms partially mediated the relationship between disease activity and HRQOL, reducing the effect of disease severity on HRQOL from 22% to 9% in the mediation model. A Sobel test examining the significance of the indirect effect of disease severity on HRQOL via behavioral dysfunction was marginally non-significant (p = .053). Conclusions-Non-disease specific variables (e.g., behavioral dysfunction) play an important role in impacting HRQOL. Behavioral dysfunction serves as the mechanism through which disease severity partially impacts HRQOL. Continued research to identify other predictors of HRQOL in pediatric IBD will greatly enhance our future ability to design interventions to improve HRQOL and maximize health outcomes.
Journal of Paediatrics and Child Health, 2011
Aim: Impaired health-related quality of life (HRQoL) and an increased risk of psychosocial problems may encounter children and adolescents with inflammatory bowel disease (IBD). Generic HRQoL questionnaires, 15D designed for subjects over 16 years of age, 16D for adolescents aged 12-15 and 17D for younger children, allow comparison to healthy peers and have not been used in children with IBD before. Further, in paediatric IBD patients, HRQoL has not been related to disease activity.We evaluated the applicability of 15D, 16D and 17D questionnaires in the paediatric IBD population and examined how HRQoL is influenced by changes in clinical activity of IBD. Methods: The study subjects recruited at their scheduled, routine appointment in the outpatient clinic of the children's hospital completed the HRQoL questionnaire at baseline and again after 3-5 months. Disease activity was estimated by a three-level scale. The HRQoL of the study population was compared with that of the age-standardised general population. Results: Fifty-five children, aged 7-19 years, were recruited. The HRQoL scores strongly correlated with the activity of the disease (P < 0.001). The two oldest age groups with IBD had lower HRQoL scores than age-standardised peers (P = 0.001/0.04). There was no gender difference in HRQoL scores. Conclusions: IBD has a considerable impact on the HRQoL of children and adolescents. The generic HRQoL instruments used appeared to be promising tools for examining HRQoL in paediatric IBD patients in different age groups, but larger studies to establish their usefulness in the follow-up of young patients are still warranted.
Quality of Life and Disease Severity in Pediatric Inflammatory Bowel Disease
Journal of Pediatric Gastroenterology and Nutrition, 2005
Objective: To extend development of a pediatric inflammatory bowel disease (IBD) health-related quality of life (HRQoL) measure by determining its factor structure and associations of factors with generic HRQoL measures and clinical variables. Patients and Methods: Cross-sectional survey of children and adolescents ages 8 years to 18 years and their parents attending any of 6 US IBD centers, recruited from either existing registry of age-eligible subjects or visits to participating centers. The survey included generic (Pediatric Quality of Life Inventory) and IBD-specific (Impact Questionnaire) quality of life measures, disease activity, and other clinical indicators. We carried out factor analysis of Impact responses, comparing resulting factors with results on the generic HRQoL and the clinical measures. Results: We included 220 subjects (161 with Crohn disease and 59 with ulcerative colitis). Initial confirmatory factor analysis did not support the 6 proposed Impact domains. Exploratory factor analysis indicated 4 factors with good to excellent reliability for IBD responses: general well-being and symptoms, emotional functioning, social interactions, and body image. Two items did not load well on any factor. The 4 factors correlated well with the Pediatric Quality of Life Inventory and subscales. Children with higher disease activity scores and other indicators of clinical activity reported lower HRQoL. Conclusions: This study provides further characteristics of a HRQoL measure specific to pediatric IBD and indicates ways to score the measure based on the resulting factor structure. The measure correlates appropriately with generic HRQoL measures and clinical severity indicators. JPGN 46:164-171, 2008.
Disease impact on the quality of life of children with inflammatory bowel disease
World Journal of Gastroenterology, 2017
AIM To assess the impact of disease characteristics on the quality of life (QOL) in children with inflammatory bowel diseases (IBD). METHODS This was a cross-sectional study conducted at the First Department of Pediatrics of the University of Athens at the "Aghia Sophia" Children's Hospital. Children diagnosed with Crohn's disease (CD) or ulcerative colitis (UC), who were followed as outpatients or during a hospitalization, participated, after informed consent was obtained from their legal representative. QOL was assessed by the IMPACT-III questionnaire. Demographic data and disease characteristics were also collected. Statistical analyses included parametric (Student's t-test and Pearson's r) and non-parametric (Mann-Whitney test, Fisher's test and Spearman's rho) procedures. RESULTS Ninety-nine patients (UC: 37, 73.0% females, CD: 62, 51.6% females), aged 12.8 ± 2.6 years were included.
Psychological distress in adolescents and young adults with inflammatory bowel disease
Revista Salud y Conducta Humana, 2021
Background: Inflammatory Bowel Diseases (IBD) are a group of pathologies characterized by affecting the digestive tract, which includes Ulcerative Colitis (UC) and Crohn's disease (CD). In recent years, there has been a significant increase in IBD cases in Puerto Rico in children of age 14 and under. In contrast to their peers, adolescents and young adults with IBD experience challenges due to the nature of the disease. While the physical challenges of IBDs are well known, the disease also affects their quality of life due to emotional and social obstacles. The vulnerability of experimenting anxiety and depression symptoms in patients with IBD, could have negative implications in the treatment of the disease. Objective: We aimed to describe the psychological distress presented in adolescents and young adults with IBD. Method: The database of Centro Médico Episcopal San Lucas pediatric unit was used for data collection between the years 2015-2019. Eleven cases of patients between the ages of 14-20 years old with IBD were identified. Conclusion: Results did not present a significant difference between the categories of IBD and the presence of depression and the presence of anxiety. However, when UC and CD patients were compared, there was a noticeable increased presence of depression symptoms among patients with UC.