A Review of Health Related Quality of Life in Pediatric Inflammatory Bowel Disease Patients

Background

Inflammatory bowel disease (IBD), including both ulcerative colitis and Crohn’s disease, is a chronic autoimmune condition that can have debilitating symptoms and sequelae. Crohn’s disease causes transmural inflammation anywhere along the gastrointestinal tract that can appear as skip lesions [1]. Ulcerative colitis, on the other hand, causes inflammation that is limited to the mucosa and submucosa located only in the colon [1]. On gross appearance, Crohn’s disease presents with cobblestoning of the mucosa and bowel wall thickening [1]. Ulcerative colitis, on the other hand, has friable mucosa and loss of segmented appearance of the colon [1]. Histological differences between the two also exist; Crohn’s disease presents with granulomas while ulcerative colitis presents with crypt abscesses [1]. IBD can also present with extraintestinal symptoms, such as arthritis, uveitis, erythema nodosum, and oral ulcerations [2]. The pathogenesis behind IBD is multifold, involving genetics, gut microbiome, and environmental factors, such as diet and drug use [3]. Symptoms of IBD can vary greatly and include abdominal pain, diarrhea, hematochezia, weight loss, and fatigue [2]. Moreover, many patients suffering from IBD experience symptoms of pain even in the absence of flares and while their illness is in remission. This can be explained by changes in sensory pathways, pain processing, and neural connections that occur in the setting of IBD and exacerbate a patient's illness [4]. By the same token, a significant portion of these patients suffer from anxiety and/or depression [5]. They are also more susceptible to developing psychiatric illnesses, such as bipolar disorder and schizophrenia, furthering the burden of IBD [6]. The prevalence of IBD is on the rise in America as 77/100,000 children in the United States are diagnosed with this illness. [7]. It is estimated that at least 25% of IBD cases are in the pediatric population [8]. The clinical course of IBD can be drastic and rapidly changing. Complications of IBD include malignancy, fistula, malnutrition, weight loss, bowel obstruction, perforation, and infection [9]. Although there has been an uptick in IBD cases, where symptoms and consequences can be morbid, not much attention has been directed towards examining the quality of life in these patients. Quality of life (QOL) is useful for patient care because it can lead to better outcomes. One possible theory why QOL has been overlooked is because it can be viewed as subjective and thus, insignificant for treating both individual patients and patient populations. However, efforts have been made to define and measure QOL objectively.

Quality of life, as defined by the World Health Organization, is “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” [10]. Health related quality of life (HRQOL) focuses more specifically on the physical, mental, and emotional aspects of one’s life that can affect and be affected by health status directly [10]. Some factors encompassed by HRQOL are symptoms of disease, treatment side effects, treatment satisfaction, life satisfaction, and emotional wellbeing. It is vital to examine health related quality of life for a multitude of reasons. It can encourage a biopsychosocial approach for patient treatment and force us to examine the patient beyond the illness. It can serve as a marker of patient progress, improvement, and help achieve patient comfort and wellness. Considering patient health related quality of life can also enhance protective factors and minimize risk factors to improve clinical course. All of this is especially important in chronic illnesses, such as IBD, where clinical outcomes can vary greatly and symptoms can be persistent and severe. Similarly, studying health related quality of life in pediatric patients should be emphasized since these patients are so young and have much of their lives ahead of them. Pediatric patients also present with more extensive symptoms than adults [11]. Thus, treating IBD should emphasize HRQOL, along with the gastrointestinal tract and extraintestinal symptoms [12]. HRQOL can be examined with validated surveys, such as the Pediatric Quality of Life Questionnaire (PedsQL). This survey is advantageous because it is appropriate for children of different age groups, concise, validated, and explores physical, social, and emotional functioning [13]. The objective of this review is to examine health related quality of life in pediatric patients suffering from IBD by comparing (1) health related quality of life between pediatric IBD patients and healthy children and (2) health related quality of life between pediatric IBD patients and other ill children.

Results

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 [14]. 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 [14].

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 [12]. 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 [12].

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 [15]. 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 [15].

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 [16]. 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 [16].

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 [13]. 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 [13].

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 [10]. They compared the HRQOL in 60 pediatric patients who suffered from IBD and 60 pediatric patients with a BMI greater than the 85^th 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 [10]. 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) [10].

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) [17]. 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 [17].

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 [18]. 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 [18]. 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 [19].

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 [19]. 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 [19].

Discussion

This narrative review examined 11 studies published after 2000 to review HRQOL in pediatric IBD patients as compared to other pediatric patients and healthy children. Initially, we theorized pediatric patients with IBD have a reduced HRQOL when compared to both healthy and other ill children. Interestingly, our findings showed IBD pediatric patients displayed worse HRQOL than healthy children, but similar or greater HRQOL when compared with other sick pediatric patients. These results are critical as they can guide intervention and lead to better outcomes for IBD patients. In this discussion, we aim to explain key results reported above and their greater impact.

Factors Associated with Reduced HRQOL in IBD Patients

In our review, we discovered a variety of factors associated with a reduced HRQOL in pediatric patients with IBD. Of note, gender was highlighted as such a factor because females with IBD demonstrated lower HRQOL than their male counterparts [10,12,13,20]. This is consistent with other literature as they also noted that HRQOL is worse for females [21]. Reasons for this are multifold; one explanation is that puberty is much more drastic for females than males. The hormonal changes here are also accompanied by more excitability and worsening psychological health [21]. Moreover, females tend to be more concerned with their appearance and wellbeing [21]. Next, we also found in the literature that coping mechanisms for females involve dealing with issues internally, while males do so externally [21]. Remarkably, all of this contributes to a worsened HRQOL in female patients, when compared to male patients, and substantiates our findings.

Another compelling factor associated with a reduced HRQOL that we discovered in our review is fatigue [14, 16]. A few different explanations were found for this. First, patients with IBD suffer from a worse sleep quality and greater sleep disturbances, all of which lead to more fatigue as sleep is a predictor of fatigue [22]. Second, patients with lower IGF-1 levels had significantly greater fatigue. Essentially, this suggests IGF-1 can influence inflammation and fatigue in these patients [14]. This explanation is especially noteworthy and exciting because it can open the door for more research exploring the biological mechanism behind fatigue and HRQOL. We also found similar findings in the literature as fatigue has been implicated in reduced HRQOL in other chronic conditions, such as cancer, rheumatologic disease, and asthma [14,23,24,25].

Disease activity was also associated with a worse HRQOL in IBD pediatric patients [13,15,26]. Specifically, our review determined there is an inverse relationship between disease activity and HRQOL. This finding is intuitive as more severe disease corresponds to worse symptoms, complications, and subsequently a reduced HRQOL. On the contrary, we also discovered one finding in the literature that is dissimilar to the ones reported earlier. In the literature, we noted children with IBD scored lower in the school functioning domain when compared to other ill patients [27]. Interestingly, this contrasts from the results we reported as they found that children with IBD had comparable or a greater HRQOL than children with other diseases. We also uncovered an explanation for this; impaired school functioning in children with IBD can be due to disease flare ups, frequent restroom use, and limited participation in gym class [27].

Factors Associated with Reduced HRQOL in Other Chronically Ill Patients

Notably, we also found that children with IBD had significantly greater HRQOL than children with constipation. This is because of the great stigma associated with constipation [14]. This is consistent with the literature as other patients with constipation have also demonstrated a reduced HRQOL. Chronic constipation is a cumbersome illness and there have even been some suggestions that it can deteriorate HRQOL [28,29,30,31,32]. Additionally, we determined the stigma revolving around constipation extends deeply as patients are hesitant to discuss their bowel-related symptoms. Instead, they would choose to self-medicate and postpone meeting with their provider [33]. Interestingly, the symptoms and stigma of constipation can accumulate and worsen HRQOL because patients are more inclined to let their illness worsen than seek a solution.

By the same token, we discovered that children with IBD had comparable HRQOL when compared to patients with FAP [14]. Strikingly, our results showed that pediatric patients with FAP have such impaired HRQOL because of an increased sensitivity to pain [34]. This is in line with the literature; for instance, we determined these patients have a lower threshold for pain, rectal hypersensitivity, and abnormal instances of referred pain [35,36,37,38]. Markedly, this increased pain sensitivity is due to changes in the central nervous system, increased recruitment of neurons in times of pain, and altered brain-gut communication [39,40,41].

Effect of Age and Adolescence on HRQOL

Remarkably, we observed age and the period of adolescence had inconsistent effects on HRQOL. On one hand, our findings showed that adolescent IBD patients demonstrated reduced HRQOL when compared to younger children [15]. This is because adolescence is a critical time of development, and these patients are not entirely equipped with dealing with stressors [15]. Thus, the effects of chronic disease, such as IBD, are especially great on adolescents and result in reduced HRQOL. Interestingly, this idea is also echoed in the literature. We found the time of adolescence is associated with hormonal changes that cause physiological discrepancies and imbalances. There is also a gap between their physical and intellectual development, all while these adolescents are being forced to develop their own values, goals, and identities [21]. Essentially, without having the proper tools, adolescents are pitted in a situation that requires them to grow and mature. This can exacerbate the stress already associated with a chronic illness and significantly impair HRQOL. On the other hand, we also found that there was no such association between age, adolescence, and a reduced HRQOL [42]. Subsequently, this disagreement in the literature prompts more research into the effects of age and adolescence on HRQOL in IBD patients.

Additional Factors Associated with Reduced HRQOL in IBD Patients

Diving further into the literature shows there are many other factors at play that can explain a decreased HRQOL in IBD pediatric patients when compared to healthy children. For instance, extra-intestinal symptoms, such as those related to musculoskeletal, have been correlated to a lower quality of life in IBD patients [43]. We also noted treatment with steroids are associated with an improved quality of life as these patients demonstrated reduced systemic symptoms [20]. Strikingly, number of flare-ups, recurrences of disease, perceived stress, and number of hospitalizations displayed an inverse relationship with HRQOL. On the contrary, level of education, income, social support, employment, and being male were directly associated with a higher HRQOL [44]. Considerably, psychological variables can also be at play because body appreciation, having a meaning in life, and adapting a positive attitude were associated with a greater HRQOL [45].

Limitations

Limitations of this review article can be traced to a lack of emphasis on examining quality of life. This has manifested as a limited number of articles that explore HRQOL in pediatric IBD patients. Some studies were cross-sectional, which curbed their ability to follow patients to examine how HRQOL changed over time. Participants in these studies were also chosen from single facilities, which is not representative of the general population. The sample sizes selected were also small and lacked diversity. Some analyses were also hindered by a lack of comparison with healthy children. Other limitations include our selection criteria of articles published in English, after the year 2000, and primary studies only. Our findings may also have been restricted by an exclusion of case reports, case series, and studies focused on trials, animal subjects, and medications.

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A Review of Health Related Quality of Life in Pediatric Inflammatory Bowel Disease Patients

Abstract

Background

Methods

Results

Discussion

Conclusion

Abbreviations

Declarations

References