Health-Related Quality of Life in Children and Adolescents With Inflammatory Bowel Disease

To successfully compete with other services for scarce hospital funds, Child Life professionals must be able to demonstrate accountability through competent program evaluation In addition to the function of assessing the achievement of programs goals evaluation offers an opportunity to educate supervisory personnel by indicating (1) the value of the services offered, (2) the competence of Child Life personnel and their concern for quality, and (3) the need for additional hospital support Guidelines for conducting and submitting an evaluation and the relationship between evaluation and the promotion of Child Life goals are discussed.     

Health-Related Quality of Life in Adolescents With Inflammatory Bowel Disease: The Relation of Parent and Adolescent Depressive Symptoms

Adolescents with IBD are at risk for depressive symptoms and lower HRQOL. The association of adolescent and parent depressive symptoms with adolescent HRQOL is examined while controlling for disease activity. Adolescents (N = 86) and their caregivers completed measures of depressive symptoms. Adolescents completed an IBD-specific HRQOL measure. Parent depression significantly moderated the relation between adolescent-reported depressive symptoms and HRQOL. HRQOL decreased as adolescent depressive symptoms increased. This relation was only significant among adolescents with parents reporting higher depressive symptoms. Adolescent depressive symptoms are associated with lower HRQOL. The presence of parent depressive symptoms intensifies this relation.     

Coping Strategies and Quality of Life of Adolescents with Inflammatory Bowel Disease

OBJECTIVE: This study aims to compare generic coping styles adopted by adolescents suffering from inflammatory bowel disease (IBD) to styles used by their healthy peers, and to assess the association between coping styles and health-related quality of life (HRQoL). METHODS: A generic coping style instrument, a disease-related coping style instrument and a disease-specific HRQoL instrument were administered to 65 adolescents (12-18 years old) with IBD. Normative data from the generic instrument were available. Mean domain scores of IBD patients were compared to normative scores. Multivariate linear regression analyses were performed on models with HRQoL domains as dependent, and preselected demographic and disease-related characteristics and coping styles as independent variables. RESULTS: Adolescents with IBD use more avoidant coping styles than their healthy peers. HRQoL is associated with disease-related coping styles and with disease activity. More use of a predictive coping style (having positive expectations about the disease) and less use of a depressive reaction pattern are associated with better HRQoL in three out of six HRQoL domains. CONCLUSION: This study suggests an association between coping styles and HRQoL.     

小儿炎症性肠病23例临床分析

目的了解小儿炎症性肠病（inflammatory bowel disease,IBD）的临床、实验室检查、影像学检查和内镜检查特点,以提高对小儿炎症性肠病的诊断水平。方法对1992年3月至2007年10月复旦大学附属儿科医院消化科收治的23例炎症性肠病患儿的临床资料进行回顾性分析。结果小儿炎症性肠病以男童发病为多,腹痛、腹泻、便血为溃疡性结肠炎（ulcerative colitis,UC）与克罗思病（Crohn’s disease,CD）的共同表现,而血便以溃疡性结肠炎多见,腹痛多见于Crohn’s病,肠外表现Crohn’s病更为多见。病变部位,溃疡性结肠炎以乙状结肠分布为主,Crohn’s病以末端回肠、回盲部分布为主,与成年人炎症性肠病相比,病变累及范围更广。结论需建立统一的小儿炎症性肠病活动指标,对炎症性肠病进行系统管理,尽早做出诊断,避免小儿生长发育迟缓。     

Spiritual Well-Being and Mental Health Outcomes in Adolescents With or Without Inflammatory Bowel Disease

PurposeThe purpose of this study was threefold: 1) to describe spiritual well-being (existential and religious well-being) in adolescents with inflammatory bowel disease (IBD) versus healthy peers; 2) to examine associations of spiritual well-being with mental health outcomes (emotional functioning and depressive symptoms); and 3) to assess the differential impact of existential versus religious well-being on mental health.MethodsA total of 155 adolescents aged 11–19 years from a children's hospital and a university hospital filled out questionnaires including the Spiritual Well-Being Scale, the Children's Depression Inventory–Short Form, and the Pediatric Quality of Life Inventory. Covariates in multivariable models included demographics, disease status, and interactions.ResultsParticipants’ mean (SD) age was 15.1 (2.0) years; 80 (52%) were male; and 121 (78%) were of white ethnicity. Levels of existential and religious well-being were similar between adolescents with IBD and healthy peers. In multivariable analyses, existential well-being was associated with mental health (partial R² change = .08–.11, p < .01) above and beyond other characteristics (total R² = .23, p < .01). Presence of disease moderated both the relationship between existential well-being and emotional functioning and that between religious well-being and depressive symptoms: that is, the relationships were stronger in adolescents with IBD as compared with healthy peers. Religious well-being was only marginally significantly associated with mental health after controlling for other factors.ConclusionsAlthough both healthy adolescents and those with IBD had high levels of spiritual well-being, having IBD moderated the relationship between spiritual well-being and mental health. Meaning/purpose was related to mental health more than was connectedness to the sacred.     

Health-Related Quality of Life in Publicly Insured Children With Special Health Care Needs

Our objective was to examine health-related quality of life (HRQOL) in publicly insured children with special health care needs (CSHCN). Data were obtained from 183 caregivers of CSHCN (M = 10 years; 54% African American) in urban health clinics. CSHCN had poorer physical and psychosocial HRQOL than children in a normative sample. In regression analysis, children who had more health problems and more health visits in the previous 12 months had poorer physical HRQOL. Poorer psychosocial HRQOL was associated with more health problems and urban life stressors. Implications for practice and policy are discussed.     

Health-Related Quality of Life in Adolescents With Chronic Illness in Jamaica: Adolescent and Parent Reports

PurposeThe aim of this study is to assess the level of agreement between adolescents’ self-assessment and parent-proxy reports on health-related quality of life (HRQOL) in Jamaican adolescents with chronic illness.MethodsA cross-sectional study was conducted, recruiting adolescents living with a chronic illness (ALCIs)—asthma, human immunodeficiency virus, insulin-dependent diabetes mellitus, or sickle cell disease and age/sex-matched healthy adolescents. Data were collected on HRQOL from adolescents and parents using the Pediatric Quality of Life Scale. Parent-adolescent agreement was determined at group level (Wilcoxon signed-rank test) and individual level (intraclass correlation coefficient).ResultsTwo hundred twenty-six (226) parent/adolescent pairs participated: 130 ALCIs and 96 healthy peers; mean age 14.9 ± 2.8 years; 58% females. Adolescents with and without chronic illness reported similar HRQOL; parent-proxies reported better HRQOL for healthy adolescents compared to ALCIs. Intraclass correlation demonstrated higher levels of parent-adolescent correlation for ALCIs than healthy adolescents (ALCIs: 0.11–0.34; healthy adolescents: 0.01–0.10). At group level, analyses demonstrated better parent-proxy rating of QOL in all of the scores with the exception of the general health score. Parent-proxies overestimated QOL for asthma and insulin-dependent diabetes mellitus but not for sickle cell disease and human immunodeficiency virus. Linear regression modeling revealed that female sex and living with chronic illness were significant predictors of agreement.DiscussionParent-proxies overestimated adolescents’ QOL compared to adolescents’ report regardless of whether the adolescent was living with a chronic illness or not. As such, health care providers should elicit feedback from the adolescent wherever possible and proxy reports should be used as complementary information rather than primary source.     

Micronutrient Deficiencies and Anemia in Children with Inflammatory Bowel Disease

Children with inflammatory bowel disease (IBD) are at risk of developing nutrition deficiencies, particularly because of reduced intake, restrictive diets, malabsorption, and excessive nutrient loss. The aim of this study was to determine the prevalence and predictors of anemia and micronutrient deficiencies at diagnosis and one year follow up in children and adolescents with inflammatory bowel disease (IBD). Children and young adults diagnosed with IBD before the age of 17 years between 2012 and 2018 were included. Laboratory measurements including serum levels of iron, ferritin, zinc, vitamin D, vitamin A, vitamin E, selenium, copper, vitamin B12, and red blood cell (RBC) folate at diagnosis and one-year follow-up were documented as part of the Manitoba Longitudinal Pediatric Inflammatory Bowel Disease (MALPID) Cohort. A total of 165 patients with IBD were included, 87 (53%) with Crohn’s disease (CD) and 78 (47%) with ulcerative colitis (UC). The prevalence of deficiencies in our cohort at diagnosis and one year follow-up, respectively, were iron (56% and 27%), ferritin (39% and 27%), zinc (10% and 6%), vitamin D (22% and 13%), vitamin A (25% and 25%), vitamin E (5% and 4%), selenium (10 and 7%), copper (17% and 27%), vitamin B12 (2% and 5%), and Red blood cell (RBC) folate (1% and 17%). Anemia was present in 57% and 25% at diagnosis and follow up respectively. In CD patients, age of diagnosis (15y–younger than 18y) was a predictor of moderate to severe anemia and albumin levels (<33 g/L) were protective against anemia. Many children with IBD suffer from anemia and micronutrient deficiencies at diagnosis and some fail to recover after one year despite being in clinical remission.     

Diet Quality and Dietary Inflammatory Index in Dutch Inflammatory Bowel Disease and Irritable Bowel Syndrome Patients

Inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) share common culprit foods and potential pathophysiological factors. However, how diet may contribute to disease course and whether this differs between both entities is unclear. We therefore investigated the association of dietary indices with intestinal inflammation and gastrointestinal symptoms in both IBD and IBS patients. Food frequency questionnaires from 238 IBD, 261 IBS and 195 healthy controls (HC) were available to calculate the overall diet quality by the Dutch Healthy Diet-Index 2015 (DHD-2015) and its inflammatory potential by the Adapted Dietary Inflammatory Index (ADII). Intestinal inflammation and symptoms were evaluated by faecal calprotectin and the Gastrointestinal Symptom Rating Scale, respectively. The DHD-2015 was lower in IBD and IBS versus HC (p < 0.001), being associated with calprotectin levels in IBD (b = −4.009, p = 0.006), and with abdominal pain (b = −0.012, p = 0.023) and reflux syndrome (b = −0.016, p = 0.004) in IBS. ADII scores were comparable between groups and were only associated with abdominal pain in IBD (b = 0.194, p = 0.004). In this side-by-side comparison, we found a lower diet quality that was differentially associated with disease characteristics in IBD versus IBS patients. Longitudinal studies are needed to further investigate the role of dietary factors in the development of flares and predominant symptoms.     

超重肥胖对青少年健康相关生活质量的影响

目的分析超重、肥胖对北京地区青少年健康相关生活质量的影响,为全面评价体重对健康的影响提供依据。方法选择北京地区13～16岁初中学生505名进行问卷调查,内容包括个人情况、家庭情况和健康相关生活质量。结果肥胖组较正常和超重组表现出更多的生理健康和心理健康问题,差异有统计学意义（P〈0.05）。肥胖组男生在伙伴关系上得分与正常组男生比较,差异有统计学意义;肥胖组女生在伙伴关系和总的社会适应部分得分与正常组女生比较,差异均有统计学意义。结论伴随超重的出现,男女青少年都表现出一系列身心健康问题,女生社交问题更明显,需全面加强心理辅导。     

Assessing Health-Related Quality of Life in Children with Coeliac Disease: The Italian Version of CDDUX

We aimed to assess Health-Related Quality of Life (HRQoL) of Italian children and their parents with coeliac disease (CD) using the Coeliac Disease Dutch Questionnaire (CDDUX). The CDDUX underwent a cross-cultural adaptation in a multi-step process, according to international guidelines. A total of 224 children aged between 8–18 years and their parents were prospectively recruited. Cronbach α coefficient was determined as a measure of internal consistency of the questionnaire and inter-children/parent reliability by intraclass correlation coefficient. Univariate and bivariate regression models were used to evaluate correlations between clinical variables and children and parents subclasses of CDDUX and overall mean Paediatric Quality of Life Inventory (PedsQL). The Italian CDDUX proved to be valid and reliable, mean CDDUX total score revealing a neutral evaluation of the quality of life in children 52.6 ± 17.2 and parents 49.5 ± 17.9 (p = 0.07) with strong correlation with PedsQL. The only clinical variable which appeared to affect significantly quality of life both in children and parents was the lower age. A comparison with our results showed remarkable differences in the HRQoL of populations of various nationalities. The Italian version of the CDDUX questionnaire is a simple and reliable tool for assessing the HRQoL in children and adolescents with CD.     

Assessing Health-Related Quality of Life Among Children With Special Health Care Needs in the United States

The objectives of this article were to examine the differences in health-related quality of life (HRQOL) between children with and without special health care needs, and identify the risk factors associated with HRQOL in children with special health care needs (CSHCN). Data from the National Survey of Children's Health 2003 were used (N = 66,416). Results showed that the HRQOL summary scores were lower among CSHCN than children without special health care needs. Regression analyses revealed that having multiple (3 or more) special health care needs was the strongest predictor of lower HRQOL. In addition, younger age, lower socioeconomic status, health care access barriers, and poor maternal health were all factors associated with lower HRQOL. Implications for practice and policy are discussed.     

Health-related Quality of Life in Children and Adolescents after Invasive Treatment for Congenital Heart Disease

Since the 1980s treatment techniques for congenital heart disease (ConHD) have gradually evolved. Therefore, actual information on the outcomes, including quality of life is required. Health-related quality of life was assessed long-term in four diagnostic groups of children, who underwent invasive treatment for ConHD between 1990 and 1995. The scores on the TNO-AZL Child Quality of Life Questionnaire (TACQOL) of both children with ConHD and their parents were compared with those of a same-aged reference group. The total sample of ConHD children (n = 113, 8–15 years old) obtained significantly lower mean scores on motor functioning, cognitive functioning, and positive emotional functioning than reference peers, reflecting an experience of poorer functioning. ConHD children, aged 8–11 years, obtained lower mean scores on 5 of the 7 TACQOL scales than reference peers. They also had a lower score on positive emotional functioning than 12- to 15-year-old ConHD children. The total sample of ConHD children obtained lower outcomes compared to their parents on 4 of the 7 TACQOL scales. No significant differences were found in health-related quality of life between ConHD boys and girls, neither between different diagnostic groups. Overall, this sample of recently treated ConHD children showed a worse health-related quality of life compared to reference groups. These findings deserve further attention.     

Pathogenesis of Musculoskeletal Deficits in Children and Adults with Inflammatory Bowel Disease

Musculoskeletal deficits are among the most commonly reported extra-intestinal manifestations and complications of inflammatory bowel disease (IBD), especially in those with Crohn’s disease. The adverse effects of IBD on bone and muscle are multifactorial, including the direct effects of underlying inflammatory disease processes, nutritional deficits, and therapeutic effects. These factors also indirectly impact bone and muscle by interfering with regulatory pathways. Resultantly, individuals with IBD are at increased risk of osteoporosis and sarcopenia and associated musculoskeletal morbidity. In paediatric IBD, these factors may contribute to suboptimal bone and muscle accrual. This review evaluates the main pathogenic factors associated with musculoskeletal deficits in children and adults with IBD and summarises the current literature and understanding of the musculoskeletal phenotype in these patients.     

Weight Misperception and Health-Related Quality of Life in Appalachian Adolescents in the United States

Introduction There is limited research on the relation between weight misperceptions and health-related quality of life (HRQoL) among U.S. adolescents. Methods Baseline data (n = 1509) collected in 2012 from the Team Up for Healthy Living project were used. Measures included BMI percentiles calculated from measured height and weight; self-perception of weight status; and the 23-item PedsQL? Inventory. Multiple linear regression was performed after adjustment for covariates to examine associations between weight misperception and HRQoL. Results Compared to accurate weight perception, weight underestimation was associated with higher total HRQoL (β = 2.41), physical health (β = 2.77), and emotional (β = 2.83), social (β = 2.47) and psychosocial functioning (β = 2.38) (all p < 0.05). Weight overestimation was associated with lower social functioning (β = ?13.13, p < 0.05). Stratified by gender, associations were observed only in males. Discussion Weight underestimation had greater association with HRQoL than weight overestimation; and varied by gender. Better understanding of these associations will assist in improving the health of adolescents in Southern Appalachia.