Based on the inclusion criteria, we selected 11 primary articles for our review as described above. From these articles, the extracted data included author list, publication year, study design, study setting, participant characteristics, sample size, type of QOL survey, and results. The selected articles compared children diagnosed with IBD to healthy control children or other ill children using questionnaires on disease impact and severity, including the PedsQL 4.0 and the Impact III surveys. The PedsQL survey was designed to measure health related quality of life in adolescents and children with both chronic and acute health conditions. It considers physical, emotional, social, and school functioning as well as physical health and psychosocial health. The higher the score, the better the health related quality of life in the child/adolescent. The Impact III questionnaire, similarly, is a health related quality of life measure. However, it is specific for pediatric patients with diagnosed IBD. Both questionnaires have been established as valid measurement tools.
Comparison of HRQOL in Children with IBD and Healthy Controls
Marcus et al. evaluated the level of fatigue and health related quality of life in children diagnosed with IBD and compared results to healthy controls . 70 children with established IBD diagnoses and 157 healthy control children were recruited from a large university based urban pediatric hospital in Chicago. All subjects completed the PedsQL 4.0, PedsQL Multidimensional Fatigue Scale, and the Children’s Depression Inventory (short form). Children with IBD also completed the IMPACT III questionnaire. Univariate analyses showed that subjects with IBD (76.69 ± 14.22) reported significantly lower total HRQOL scores than the controls (85.93 ± 10.40, p<.0001). Further, IBD patients had lower scores on school functioning (68.43 ± 18.21vs. 83.38 ± 13.18, p<.0001) and physical health (77.90 ± 17.32 vs. 90.86 ± 8.44, p< .0001) when compared to healthy controls. With regards to the Fatigue Scale, IBD patients scored lower on the total score (73.89 ± 16.82 vs. 82.19 ± 12.27, p< .001), General Fatigue score (75.30 ± 17.53 vs. 86.36 ± 13.11, p< .0001) and Sleep/Rest Fatigue (68.75 ± 19.27 vs. 77.44 ± 15.41, p< .01). Of note, differences in Cognitive Fatigue scores between IBD and control subjects were not significant .
Silva et al. assessed the quality of life in children and adolescents with diagnosed IBD compared to healthy children and determined various factors that influence the HRQOL . 35 children and adolescents between the ages of 3 and 18 with established IBD diagnoses were recruited from a tertiary pediatric gastroenterology center in Brazil. The control group consisted of 62 healthy children and adolescents recruited from a local school. Quality of life was evaluated via the PedsQL 4.0 questionnaire. Children with IBD had significantly lower results than healthy children on the total PedsQL score (68.12±21.6 vs. 84.41±15.5, p<0.01) as well as on subscales of physical health (70.71±26.2 vs. 86.33±14.1, p<0.01) and emotional health (66.17±21.4 vs. 78.87±22.6, p<0.01). Further, IBD patients showed worse school functioning (61.28±20.0 vs. 83.60±17.5, p<0.01) and worse psychosocial functioning (69.53±17.9 vs. 82.88±19.4, p<0.01) when compared to healthy controls .
Loonen et al. used both a disease-specific (the IMPACT III) and a generic (Netherlands Organization for Applied Scientific Research Academic Medical Center Children's Quality Of Life Questionnaire -TACQOL) questionnaire to assess health related quality of life in pediatric patients with IBD compared to healthy controls . These questionnaires, as well as a 5-item symptom card, were administered to 83 children between the ages of 8 and 18 that were recruited from two large secondary/tertiary hospitals in the Netherlands. Results were compared to a large reference population of 1810 Dutch children. Compared to healthy children, IBD patients scored significantly lower on multiple domains of the TACQOL including body complaints (22.4±6.6 vs. 24.4±5.1, p<0.05) motor functioning (27.9±6.4 vs. 30.2±2.6, p<0.05), autonomy (29.8±4.6 vs. 31.7±1.1, p<0.05), and negative emotions (11.0±3.2 vs. 11.9±2.5, p<0.05). However, there was no statistically significant difference between IBD patients and healthy controls in the domains of cognitive functioning, social functioning, and positive emotions .
Casadonte et al. conducted a prospective cohort study that examined the association between fatigue, insulin-like growth factor 1 (IGF-1), and inflammatory cytokines in pediatric patients with IBD. This study also compared QOL between pediatric IBD patients and healthy children . To evaluate quality of life, the PedsQL, PedsQL Multidimensional Fatigue, the Children’s Depression Inventory, and the IMPACT III questionnaire were filled out by 67 children with IBD. Patients were recruited from a pediatric IBD subspecialty clinic in Chicago and results were compared to those of 157 healthy children recruited from an electronic bulletin board. For the PedsQL report, IBD patients demonstrated significantly lower total scores (77.79 vs. 85.93) and several subscale scores including physical health, psychosocial health, and school functioning when compared to healthy controls (80.63 vs. 90.86, 77.47 vs. 84.29, 67.5 vs. 83.38 p<0.05), respectively. Scores were not significantly different in the emotional and social functioning categories. Results from the PedsQL Fatigue scale showed that IBD patients have significantly lower total scores and all subscale scores (general fatigue, sleep/rest fatigue, cognitive fatigue) when compared to healthy children (p<0.05). Further, a significant direct relationship was found between increased fatigue and increased prevalence of depression symptoms among IBD patients .
Upton et al. developed a UK-English version of the PedsQL questionnaire and assessed its validity by distributing it to healthy children as well as children diagnosed with chronic conditions, such as IBD . 1034 healthy children were recruited from 23 schools in South Wales and 365 children with chronic conditions were recruited through patient information systems, of which 76 patients had diagnoses of IBD. Children with IBD scored lower than healthy children on all scales of the PedsQL including total score (74.2 vs. 83.9, p <0.001), physical health (75 vs. 88.5, p<0.001), psychosocial health (73.6 vs. 81.8, p<0.001), emotional functioning (68.1 vs. 78.5, p<0.001), and school functioning (69.5 vs. 78.9, p<0.001). However, there was no statistically significant difference in social functioning between IBD patients and healthy control children. Further, results from this UK PedsQL were consistent with the results from the established US PedsQL, and thus were validated by the investigators .
Comparison of HRQOL in Children with IBD and other Chronic Conditions
The second goal of this review article is to explore the differences, if any, in health related quality of life between pediatric patients who suffer from IBD and other sick children. In a study conducted by Faus et al in 2014, they aimed to compare children with IBD and children who were classified as overweight and obese . They compared the HRQOL in 60 pediatric patients who suffered from IBD and 60 pediatric patients with a BMI greater than the 85th percentile. Interestingly, they determined HRQOL scores, as obtained from the PedsQL survey, were comparable between the two groups. For instance, in the category of physical functioning, obese patients yielded a score of 79.98, while IBD patients yielded a score of 82.86. Similar findings were also seen in the domains of emotional functioning (71.48 vs. 74.58), social functioning (81.67 vs. 86.47), school functioning (71.78 vs. 71.37), and psychological summary (74.52 vs. 77.40) between obese and IBD patients, respectively . Moreover, this paper also stratified their data to identify causes for discrepancies in HRQOL between the patient groups. When the data was stratified for factors of socioeconomic status, such as race, parent/guardian education, and family income, there was still no statistically significant difference in HRQOL between IBD and obese patients. However, when the data was stratified for gender, statistically significant differences were observed in HRQOL in the domains of physical functioning, emotional functioning, and psychological summary (p<0.05). Females, when compared to males, demonstrated lower HRQOL in both patient groups with a mean difference of 6.692 (p=0.033) .
Similarly, Youssef et al explored quality of life in pediatric patients suffering from functional abdominal pain (FAP) in comparison to other sick children with IBD and gastroesophageal reflux disease (GERD) . The HRQOL was compared between 65 patients with IBD, 65 patients with FAP, and 56 children with GERD with the PedsQL survey. They discovered that children with IBD had similar total PedsQL scores when compared to patients with FAP (83.8 vs. 78.1) and GERD (83.8 vs. 79.9). Patients with IBD also demonstrated similar scores in the subdomains of physical health (80.6 vs. 73), emotional health (78.1 vs. 77.3), social health (71.2 vs. 69.8), and school functioning (73.5 vs. 70.8) when compared to patients with FAP. Furthermore, differences in children with IBD vs GERD in the subcategories of physical health (80.6 vs. 84.7), emotional health (78.1 vs. 83), social health (71.2 vs. 72.3), and school functioning (73.5 vs. 68.1) were of undetermined significance .
Youssef et al also conducted another study to compare quality of life in pediatric patients with IBD, constipation, and GERD. Specifically, they examined HRQOL with the PedsQL survey for 42 IBD patients, 80 patients with chronic constipation, and 56 with GERD . Notably, they determined patients with IBD had a total HRQOL score that was greater and statistically significant when compared to children with constipation (83.8 vs. 70.4; p <0.05). Physical health scores were also greater and statistically significant for IBD patients as opposed to patients with constipation (84.6 vs. 75.3, p<0.05). However, there was no statistically significant difference in the categories of emotional health (78.1 vs. 80.3), social functioning (71.2 vs. 68.4), and school functioning (73.5 vs. 67.8) between IBD and constipation patients . Marlais et al also reported that children with constipation had the lowest quality of life, which is consistent with the findings by Youssef et al .
Likewise, a cross-sectional study conducted by Marlais et al compared HRQOL between pediatric patients with GERD and other sick children suffering from IBD and constipation . Their work examined 59 patients with IBD, 40 patients with GERD, and 44 with constipation with the PedsQL questionnaire. They reported that children with IBD had a PedsQL score that was both greater and statistically significant than children with GERD (81.8 vs. 74, p<0.05). There was no statistically significant difference, however, in the subdomains of physical health (82.2 vs. 77.4), psychosocial health (81.5 vs. 72.2), emotional health (80.3 vs.71.0), social functioning (89.2 vs. 78.1), and school functioning (74.7 vs. 67.5) between IBD and GERD patients, respectively. Children with IBD also had a higher mean total score than children with chronic constipation (81.8 vs. 73.8) of undetermined statistical significance .