Ross, Sarah C.*; Strachan, Julie†; Russell, Richard K.†; Wilson, Sarah L.*
Inflammatory bowel disease (IBD), comprising Crohn disease (CD) and ulcerative colitis (UC), is commonly diagnosed in childhood or adolescence. Around 15% to 25% of individuals with IBD are diagnosed in childhood (1) and the incidence of paediatric IBD is reported to be increasing in Europe and North America, although reasons for this remain unknown (2).
IBD is characterised by an unpredictable illness course and includes symptoms of abdominal pain, diarrhoea, nausea, fatigue, delayed puberty, and weight loss. These symptoms, in addition to treatment (including surgery, corticosteroids, and having a stoma), can be embarrassing, socially limiting, and can lead to changes in physical appearance. This may have a negative effect on body image, self-esteem, and mood (3–5). The social constraints of the disease, in addition to the considerable amount of school often missed because of illness and hospital appointments, may therefore have effect on social functioning (3,4). This could result in the children having fewer opportunities to develop autonomy as they grow older.
HOW DOES IBD AFFECT PSYCHOSOCIAL FUNCTIONING/HEALTH-RELATED QUALITY OF LIFE?
The burden of living with IBD, as identified in adults (6), may be even greater in the developing child. If developmental tasks and transitions are halted, then greater psychosocial difficulties and reduced health-related quality of life (HRQOL) may be expected. Difficulties in these areas have been shown to have an adverse effect on treatment adherence (7) and may predispose children to develop more severe psychological or psychiatric conditions later in life. Additionally, recent prospective studies examining the pathogenic role of psychological stress in adults with IBD have revealed that individuals with heightened anxiety and depression are at a higher risk of further disease activity (8).
PSYCHOSOCIAL FUNCTIONING/HRQOL AND ITS MEASUREMENT
HRQOL, including physical, psychological, and social functioning, can be defined as one means of assessing the burden of chronic illness. Studies tend to refer to either HRQOL or psychosocial functioning and typically examine the effect of IBD on areas such as behavioural, emotional, social functioning, and self-esteem. To increase the sensitivity of the search for the present review, both terms were included or were used interchangeably.
Psychosocial functioning or HRQOL is typically measured using validated structured interviews (allowing for detection of psychiatric disorders) and/or validated norm-referenced questionnaires. Most questionnaires generate standardised T scores derived from the normative sample with which the measure was developed, and provide some indication as to which children may require additional mental health input. Thus, T scores are “cutoffs” that allow judgments to be made about the clinical significance of a young person's difficulties.
Generic measures of HRQOL (eg, PedsQL) (9), which compare children with IBD to healthy peers and children with other conditions, have been used. Although these allow easy comparison across illness groups, they may not be specific enough to reflect impaired functioning in young people with IBD. Researchers in Canada and the Netherlands have collaboratively developed and validated IMPACT, a paediatric IBD-specific questionnaire measuring 6 domains: bowel symptoms, systemic symptoms, social/functional concerns, body image, emotional concerns, and test and treatment concerns (10,11). In addition to these broad HRQOL measures, questionnaires that focus on specific symptoms (eg, depression) or areas of functioning (eg, social functioning) also are popular.
Mackner and Crandall (12) highlight the benefits of including a comparison group when assessing psychosocial functioning/HRQOL. A control group (healthy age-matched peers or those with another chronic illness) can identify problems that are specific to young people with IBD. Although normative reference data are often used in place of matched control groups, these data cannot account for cohort effects, geographical location, and socioeconomic factors that may be specific to the population being studied.
This is a growing area of research in which various aspects of psychosocial functioning have been examined using a range of different measures. Although the most recently published review (12) summarises the literature up to 2006, it was not performed in a systematic fashion. Because several articles have been published in the intervening years, it is timely for a systematic review to be conducted to evaluate this research literature in greater depth. With increasing recognition that populations with IBD may be experiencing difficulties, intervention trials are already under way to evaluate the efficacy of psychological treatments such as cognitive-behavioural therapy (13). A thorough examination of the evidence to date is therefore clinically relevant.
The present review summarises the relevant literature, focussing on psychosocial functioning and HRQOL in young people with IBD (up to age 18 years), to critique the methodological quality of this literature, discuss the implications of the findings, and make recommendations for future research and clinical practice.
PATIENTS AND METHODS
To identify suitable studies, the electronic databases Ovid MEDLINE, EMBASE, PsychINFO, British Nursing Index, HMIC, EBSCO (CINAHL), and Web of Science were searched between January 1990 and December 2009 using the following search terms: [affect or emotion or psychosocial or quality of life or depression or self esteem or self concept or stress or attitude or aggression or shy or social or coping or body image or anorexia or body dysmorphia or social interaction or well-being or mental health or mood or mental disorder or behaviour or anxiety or anxious or anger or fear or frustration or peer or agoraphobia or eating disorder or bulimia or mood disorder or interpersonal relations or life style or lifestyle or autonomy or self efficacy or social perception or psychology or psychiatry] AND [adolescent or pediatric or paediatric or child or children or youth or young people or young people or teen] AND [Crohn or colitis or IBD].
Because of the wide-ranging definitions of HRQOL and psychosocial functioning, these detailed search terms were chosen to increase the sensitivity of the search. A multidatabase search was conducted in addition to searching each database individually using subject headings. The results of the subject-heading search informed the final text-word search. The references of the most recent review (12) were examined to ensure no appropriate studies had been missed.
All of the studies retrieved by the database search were examined using the following inclusion criteria. Those not meeting these criteria were excluded from the review.
1. Published in a peer-reviewed journal
2. Study examined data from original research
3. Study is written in English
4. Study uses quantitative methods
5. Participants aged 18 years or younger
6. Participants have a medically confirmed diagnosis of CD, UC, or IBD unclassified
7. Outcome measures include HRQOL or aspects of psychosocial functioning (eg, social/behavioural functioning, self-esteem, body image, depression, anxiety)
8. Established or standardised questionnaires are used
Data Extraction and Quality Rating
Studies meeting inclusion criteria were quality rated by the principal researcher (S.C.R.) using an assessment developed from validated research appraisal protocols (14,15). Studies were rated on 17 items in 4 main areas: selection of participants, assessment, confounding factors, and statistical analysis. For each item, it was possible to score 2 if the item was well-covered, 1 if adequately covered, or 0 if poorly covered, giving a maximum score of 34. A quality rating percentage score of good (>75%), acceptable (>50%), or poor (<50%) was then awarded to each study.
Fifty percent of included studies were randomly selected and independently rated by another researcher (K.A.R.) using the same quality rating scale. There was 100% interrater agreement for the assignment of articles to quality rating categories. Following quality rating, methodological, demographic, and clinical information were systematically extracted from each article.
The database search identified 2141 articles. Of these, 1863 were either duplicates or were not deemed relevant to the present review and were excluded on the basis of the title. Abstracts of the remaining 278 articles were examined using full inclusion criteria, resulting in the exclusion of a further 252 articles; this left 26 potentially appropriate articles, 14 of which were excluded after reviewing the full text (10,11,16–27) (Fig. 1). The 12 remaining articles were deemed suitable to be included in the review and are discussed in detail below (4,5,28–37).
Demographic and Methodological Information
These 12 studies had a total of 5330 participants between the ages of 4 and 18 years (mean 14.1 years). Seven hundred ninety participants had IBD, and 4540 were controls (4474 healthy, 20 headache, 20 diabetes, 26 functional gastrointestinal complaints). Ten studies (n = 706) provided information on disease type (66% CD, 31% UC, and 3% IBD unclassified), and 10 studies (n = 740) reported sex (54% male) (Table 1).
TABLE 1-a Table summ...Image Tools
Eleven of the studies were cross-sectional observational studies and 1 used a prospective longitudinal design (36). Four studies (33%) did not have a control group (5,28,36,37); 5 (42%) used either matched controls recruited at the time of the study (4,29,35), another illness group (32), or illness groups or healthy controls (31). Three studies (25%) used previously collected reference group data (30,33,34).
TABLE 1-b Table summ...Image Tools
Time since diagnosis varied widely between studies from 0 months (5,36), >1 to 2 months (28), 3 months (35), 6 months (30,33,34), and >1 year (4). From the information available (4 studies did not report time since diagnosis), the mean duration of disease was 2.74 years. Only 6 studies reported disease severity in categories that could be compared among studies (4,5,33,34,36,37). In these studies (n = 539), 36% had mild, 45% had intermediate/moderate, and 19% had severe disease activity.
A wide range of standardised assessments were administered via questionnaires and clinician-led interviews. The majority of studies included both self- and parent-report questionnaires (4 used self-report measures only). Four studies conducted standardised diagnostic interviews with either the child (31) or the child and parent (5,28,37).
Quality rating revealed that 3 articles (5,28,30) scored in the “acceptable” range (>50%), whereas the remaining 9 papers scored in the “good” range (>75%). Methodological shortcomings are discussed below in relation to the results as they arise.
The 5 main outcomes (self-esteem, HRQOL, anxiety and depression, social competence, and behavioural problems/functioning) identified will be considered separately so that comparisons can be made between studies (Table 2). An average of 4 outcome assessments were used in each study, and therefore the same studies are discussed in relation to different outcomes. For this reason, Table 1 provides a summary of each study in its entirety for reference. In interpreting psychosocial functioning/HRQOL scores, larger or increasing scores indicate better functioning unless otherwise stated.
Self-esteem was measured using standardised, validated self-report questionnaires in 5 studies (4,30–33). Only one of these studies, using a measure of self-esteem, I think I am, developed in Sweden (38), found that young people with IBD had significantly lowered self-esteem compared with healthy controls (Fr = 8.46, P < 0.04) (31). T scores were not provided, making it difficult to determine whether the reduction in self-esteem was clinically significant. Additionally, the present review used 20 outcome measures in a small sample (n = 20) without adjusting significance levels for multiple comparisons. Another study using I think I am as the only outcome measure (33) found no significant difference in self-esteem between young people with IBD (n = 71) and a previously assessed healthy reference group.
Two studies using the Piers-Harris Children's Self-Concept Scale (39), a more commonly used measure yielding T scores, also found no significant difference in self-esteem between young people with IBD and healthy controls (4,32). Indeed, Gold et al (32) found that young people with IBD actually had a significantly better self-concept than the normative group; however, participants in both of these studies had mild disease activity. In line with these findings, De Boer et al (30), using the Dutch version of the Self-Perception Profile for Adolescents (Harter) (40), did not find that young people with IBD had lowered self-esteem. They did demonstrate that self-esteem was a good predictor of all of the domains of HRQOL, but they were unable to make any assumptions about the direction of causality.
Five articles assessed HRQOL (29,30,34–36). The 2 studies that administered generic multidimensional HRQOL instruments (29,30) had somewhat conflicting results. Using the Child Health Questionnaire (41,42), Cunningham et al (29) found that although parents reported their children with IBD to be more impaired than healthy controls in the overall areas of physical health (F = 50.17, P < 0.001) and psychological health (F = 5.789, P < 0.05), young people themselves did not report more difficulties except on the general health subscale. In contrast, using the Dutch Children's AZL/TNO Quality of Life Questionnaire (DUCATQOL) (43), De Boer et al (30) found that adolescent boys with IBD self-reported significantly worse overall HRQOL than the reference group (P < 0.01). The age range of the reference data, however, did not match that of the participants, resulting in unsatisfactory analyses (girls with IBD could not be compared with controls in 2 of the 4 domains of the DUCATQOL) (30), and although the 25-item version of the DUCATQOL administered was reported to be internally consistent and reproducible (43), no validation studies had been published at that time. (Validity testing of the DUCATQOL has subsequently been reported (44).)
Two studies using an IBD-specific HRQOL measure, the IMPACT Questionnaire (10,11), and generic HRQOL questionnaires found that HRQOL was significantly lower in young people with IBD (34,35). Loonen et al (34) analysed their data by 2 age strata in accordance with the normative data for the generic HRQOL measure (TNO-AZL Children's Quality of Life questionnaire) (45). They found that although adolescents (12–18 years, n = 65) had significantly lower HRQOL than healthy peers on 4 domains (body complaints, motor functioning, autonomy, and negative emotions) (P < 0.05), younger children (8–11 years, n = 18) had comparable or better HRQOL than controls (the small sample of younger children had mainly inactive or mild disease). Marcus et al (35) found that young people reported significantly lower HRQOL than matched healthy controls on both the IBD-specific IMPACT (P < 0.001) and on a well-established generic measure of HRQOL (PedsQL 4.0) (9) (P < 0.001). The second IMPACT was a large multisite prospective cohort study that administered the questionnaire to 218 young people with IBD; mean HRQOL scores significantly improved from baseline during the first year postdiagnosis (P < 0.05) (36).
Mood (Anxiety and Depression)
Seven studies investigated anxiety and depression using either structured diagnostic interviews or self-report questionnaires, increasing scores on anxiety, and depression measures indicate increasing levels of distress.
Structured Diagnostic Interviews
Four studies (5,28,31,37) used standardised clinical interviews with either children or their parents. These studies found that young people with IBD had increased levels of psychiatric disturbance or symptoms of depression and anxiety meeting Diagnostic and Statistical Manual of Mental Disorders-III-R (DSM-III-R) criteria (46). Prevalence varied from 25% (37) to 73% (5). Engstrom (31) compared 20 young people with IBD to headache, diabetes, and healthy controls using the Child Assessment Schedule (47) and found that significantly more young people with IBD fulfilled criteria for psychiatric disorder (mainly depression or anxiety) than did the 3 control groups (χ2 = 11.34, P < 0.01).
The results of the other 3 studies using structured diagnostic interviews should be interpreted with caution. Burke et al (28) and Szajnberg et al (5) recruited newly or recently diagnosed young people with IBD and administered the Kiddie Schedule for Affective Disorders and Schizophrenia (48). Although this is a well-validated semistructured interview, both studies had small sample sizes of 36 (28) and 15 (5) subjects and no control groups. Burke et al (28) found that 42% of children with a mean disease duration of 3.5 months reported symptoms of depression, whereas Szajnberg et al (5) reported that 73% of their sample had psychiatric diagnoses at the time of their IBD diagnosis. Szajnberg et al also reported that all of the children with a DSM-III diagnosis had at least 1 parent with psychopathology, and Burke et al reported that the mothers of the depressed children in their study reported increased conflict and reduced cohesion in their families.
Szigethy et al (37) omitted a control group, but they had a much larger sample of 102 young people with IBD. They used the Schedule for Affective Disorders and Schizophrenia for School-aged Children-Present and Lifetime Version (49) interview, with 19 children scoring above the clinical cutoff (>12) on a self-report questionnaire (the Children's Depression Inventory) (50). They reported that this confirmed a clinically significant diagnosis of depression in 16 of the 19 interviewed and uncovered previously undiagnosed comorbid anxiety disorders in 11 of these individuals. No measures of parental or family functioning were used in the present review.
Four studies administered the Children's Depression Inventory, a self-report measure of depression, to young people with mixed results (4,31,32,35). Although Engstrom (31) found that young people with IBD reported significantly more depressive symptoms than healthy controls (Fr = 10.00, P < 0.02), the other 3 studies did not find evidence of increased symptoms of depression in comparison with healthy controls (4,35) or another illness group (32). Two of these studies (4,31) also assessed anxiety using a self-report measure: the Revised Children's Manifest Anxiety Scale (51); they both failed to find increased symptoms of anxiety in the IBD group compared with controls.
Three studies examined social competence as an outcome (4,31,32). Engstrom (31) and Gold et al (32) used a parent-report questionnaire, the Child Behaviour Checklist (52), whereas Mackner and Crandall (4) administered the self-report version, the Youth Self-Report (53). Both measures have a social competence scale in which an increasing score indicates better social functioning. Although 2 studies (4,32) found social competence to be in the normal range and comparable with controls, Engstrom (31) found that mothers rated their children with IBD as significantly less socially competent than healthy children (Fr = 7.86, P < 0.04). Given the small sample size and large number of measures used in the present review, however, it would be prudent to interpret these results with caution (eg, by adopting a more conservative significance level).
Four studies examined behavioural functioning using either the Child Behaviour Checklist (30–32) or Youth Self-Report (4). These measures yield a total behavioural problems score as well as internalising behaviour (withdrawn, somatic complaints, and anxious/depressed) and externalising behaviour (rule-breaking and aggressive behaviour) scores. For these domains, an increasing score indicates greater levels of behavioural problems.
Engstrom (31) found that young people with IBD had significantly more total behavioural (χ2Fr = 9.34, P < 0.03) and internalising behaviour (χ2Fr = 9.83, P < 0.02) problems than healthy controls. De Boer et al (30), comparing young people with IBD to a healthy reference group, found significant differences on the total behavioural problems (P < 0.05) and internalising behaviour subscales (P < 0.01) for boys, whereas for girls, the only significant difference was found for internalising behaviour (P < 0.05). In contrast, Gold et al (32) and Mackner and Crandall (4) found mean scores in the normal range and no significant differences between young people with IBD and controls; a subset of 20% of participants with IBD did, however, report clinically impaired levels of behavioural/emotional functioning (4).
The reviewed studies present a somewhat mixed picture of psychosocial functioning/HRQOL in children and adolescents with IBD, although the evidence for decreased HRQOL and increased incidence of psychiatric disorders (eg, anxiety and depression, assessed using structured diagnostic interviews) seems fairly consistent across the included studies. In the 2 studies in which parental/family functioning also was assessed, all of those who showed psychiatric caseness came from families with other psychological problems. Children and young people with an emotional disorder are at least twice as likely as those without to have a parent with a mental health disorder (54). The evidence for lowered self-esteem, symptoms of depression and anxiety (measured by self-report measures), impaired social competence, and behavioural functioning is less clear because of conflicting results. To make sense of these findings, confounding factors that may have influenced outcomes are considered and placed in the context of other relevant research.
Self-report Versus Parent Report
The majority of studies assessing self-esteem using self-report measures found that young people with IBD reported comparable self-esteem to healthy peers. In a study using a disease-specific IMPACT score, body image was found to be impaired in adolescents with IBD (34). Research on the incidence of body image disturbances in children with IBD, although studied in other chronically ill children (eg, those with diabetes), is conspicuously absent from the research literature at present.
In making sense of the unimpaired levels of self-esteem, in addition to the inconsistent evidence for anxiety and depression, the discrepancy between findings of studies using self-report and parent report measures needs to be considered. Research findings indicate that young people with IBD may have difficulty reporting psychological symptoms (31) and tend to report fewer symptoms compared with their parents (22,23,29). Canning (55) found a similar discrepancy in reporting with a sample of children with other chronic illnesses (including cancer, cystic fibrosis, and diabetes) and their parents. In the healthy comparison group, however, children reported symptoms more frequently than did their parents.
The underreporting or minimising of symptoms seen in some young people with IBD could be caused by denial, which may be adaptive in buffering them against experiencing the full effect of the disease; indeed, 2 studies have found that young people with IBD tend to use more avoidant coping styles than do healthy peers (27,31). Conversely, it is possible that young people with IBD are reporting symptoms accurately and it is their parents, who are themselves depressed, anxious, or overinvolved with their children, who are pathologising normal behaviour and overreporting symptoms compared with parents of nonchronically ill children.
Disease severity also may contribute to the variation in results. Increased disease severity was found to correlate with increased depression (37), lowered self-esteem (33), and decreased HRQOL (29,35,36). It seems intuitive that young people experiencing more severe symptoms would report lower HRQOL than those in remission. Most of the studies reviewed had large proportions of participants categorised with either “mild” or “moderate” disease severity. Therefore, information about the difficulties experienced by individuals with more severe symptoms may be missing. The underrepresentation of this group also may make correlations between severity and psychosocial functioning more difficult to appreciate; however, a number of studies found no association between disease severity and psychopathology (4,17,18,28).
There is, however, some evidence that psychosocial factors are more predictive of emotional and behavioural functioning than disease factors (24,28). Low socioeconomic status has been found to correlate with increased depression (32) and decreased self-esteem (33), whereas parental separation correlated with reduced self-esteem (33). This is consistent with research in the general population, where these factors are considered to increase risk for psychological difficulties (56). Interestingly, children with IBD have a consistently higher proportion of cohabiting or married parents than those in healthy control groups (31). Parents perhaps stay together to care for their sick child, or alternatively, young people from more stable family backgrounds are more likely to have their IBD diagnosed and treated. Studies have also reported that children with CD proportionately are more likely to come from affluent backgrounds (57,58).
Age also may be predictive of HRQOL. Loonen et al (34) found that although adolescents with IBD had impaired HRQOL, younger children had comparable or better HRQOL than healthy peers. A longitudinal study examining HRQOL during the first year of diagnosis (36) reported that for each increasing year of age, there was an associated 5-point decrease in self-reported HRQOL. Similarly, Szigethy et al (37) noted that diagnosis later in childhood was associated with increased depressive symptoms. In the general population, depression increases in prevalence from 1% prepuberty to 3% postpuberty (54). Theoretically, it is possible that IBD has a greater detrimental effect on an adolescent's ability to complete developmental tasks (eg, developing independence and autonomy) and subsequently causes greater psychological distress. In light of these findings, examining children and adolescents as 1 group may lead to these difficulties being masked.
The mean ages of participants in the studies reviewed vary between 11.6 and 16.5 years, with the largest age range being 7 to 18 years. The possibility should be considered that conflicting findings may result from the developmental heterogeneity of participants within these studies.
Additionally, the validity of making comparisons between adolescents with IBD, who may require longer to complete the developmental tasks associated with adolescence, and controls matched on chronological age should be questioned.
Time Since Diagnosis
Individuals with a wide range of disease durations were included in the reviewed studies, from recent onset to several years postdiagnosis. Although Burke et al (28) did not find that HRQOL scores were predicted by time since diagnosis, they were examining recent-onset cases (<1–2 months). A longitudinal study found improvements in HRQOL during the first 6 months following diagnosis, which persisted during the course of the first year (36). Difficulties in psychosocial functioning/HRQOL seen before 6 months postdiagnosis are perhaps more likely to be normal adjustment reactions to being acutely unwell and receiving a diagnosis of a chronic illness. Therefore, the stage at which HRQOL is assessed may determine what is actually being measured and affect the results.
Strengths and Weaknesses of the Evidence
The reviewed studies have a number of methodological limitations, which make interpreting this body of evidence challenging. The frequent lack of comparison groups and reliance on normative data make it difficult to determine whether differences are the result of cohort effects or an effect of the disease. Although there may not be large numbers of young people with IBD experiencing clinically significant symptoms, there may be subsets that are impaired and would benefit from extra support from their gastroenterology team. Standardised, validated measures that provide T scores would allow the clinical significance of study results to be determined.
The small sample sizes, which are common and often unavoidable in paediatric research, make it more difficult to determine the validity of significant results. None of the included studies based sample size on a power calculation and only 1 calculated effect sizes for their results (30). The majority of studies included participants from a wide age range with varying disease severity and disease durations. The present review indicates that these factors may have an influence on HRQOL and as such should be considered carefully in the study design and analysis. Inclusion and exclusion criteria were often not reported in sufficient detail. All of the studies except for one used a cross-sectional design, which means causality cannot be determined.
More recently published studies, however, appear to be addressing some of the limitations outlined above. Otley and colleagues’ (36) ongoing longitudinal study will provide valuable information about HRQOL over time. Since the validation of an IBD-specific HRQOL measure (the IMPACT score), a growing number of studies have reported robust results that allow easy comparison. HRQOL is frequently used as an outcome in clinical studies of patients with IBD. There also has been an increase in the use of objective, standardised disease severity–rating questionnaires (eg, the Paediatric Crohn Disease Activity Index (59), the Pediatric Ulcerative Colitis Activity Index (60)), allowing for more accurate disease severity recording and better comparison between studies.
Strengths and Limitations of the Review
The present review used an extensive search strategy to identify all of the relevant studies to the review question. The strict inclusion and exclusion criteria ensured that only articles with a high level of methodological quality were included. The findings correspond with those reported in the most recent review (12), but consider these in more depth and discuss confounding factors such as time since diagnosis and self- versus parent reporting. Despite these strengths, there are several limitations that should be considered when interpreting the conclusions of the present review. Because of time constraints, it was neither possible to conduct hand searches of major journals in the field nor co-rate all of the included studies. For the same reason, unpublished studies and articles not available in English were not included in the review. This may have resulted in a publication bias in the included studies.
CONCLUSIONS AND FUTURE DIRECTIONS
Owing to the conflicting findings, methodological variation, and limitations of the research in this field, only tentative conclusions can be drawn. Young people with IBD appear to be at a higher risk of reduced HRQOL and of developing psychiatric conditions such as anxiety or depression compared with their healthy peers. There may be a higher incidence of low self-esteem, symptoms of depression and anxiety, impaired social competence, and internalising behaviour problems, but the evidence to date is mixed.
More research, therefore, is required. The additional research must take into account the discrepancy in child and parent reporting by using multiple informants; address the issue of disease severity by either ensuring groups are more homogenous or using statistical techniques to adjust for variation; and address the issue of age by examining children and adolescents separately. To avoid pathologising normal adjustment reactions and labelling young people with psychiatric diagnoses, only those who have had sufficient time to adjust to their IBD diagnosis should be recruited. Ensuring that studies have larger sample sizes informed by a power calculation where appropriate, using standardised well-validated measures, and reporting results more consistently would increase the quality of this area of research. Research into body image would be timely because this appears to be an underresearched area and needs to be considered given the increased awareness of body image and appearance that is typical of teenage development.
Developing a clearer understanding of the effect of IBD on HRQOL and psychosocial functioning would be beneficial for clinical staff working with this illness group because it would allow early interventions to be targeted to those most at risk. This may prevent the development of more serious mental health problems such as depression, which has been linked to difficulties with medication adherence (61), and anxiety, which may exacerbate future disease activity (8). In addition to the individual benefits associated with improved emotional and physical health, there could be financial benefits and associated savings for the health system in terms of reduced hospital admissions; also, there is a likelihood of reducing school absences, which in turn will have positive effects on the child's or teenager's social, emotional, and academic development.
The authors thank Dr Kimberly Ross, who co-rated the papers included in the review.
1. Kim SC, Ferry GD. Inflammatory bowel diseases in pediatric and adolescent patients: clinical, therapeutic, and psychosocial considerations. Gastroenterology 2004; 126:1550–1560.
2. Benchimol EI, Fortinsky KJ, Gozdyra P, et al. Epidemiology of pediatric inflammatory bowel disease: a systematic review of international trends. Inflamm Bowel Dis 2011; 17:423–439.
3. Engstrom I. Inflammatory bowel disease in children and adolescents: mental health and family functioning. J Pediatr Gastroenterol Nutr 1999; 28:S28–S33.
4. Mackner LM, Crandall WV. Long-term psychosocial outcomes reported by children and adolescents with inflammatory bowel disease. Am J Gastroenterol 2005; 100:1386–1392.
5. Szajnberg N, Krall V, Davis P, et al. Psychopathology and relationship measures in children with inflammatory bowel disease and their parents. Child Psychiatry Hum Dev 1993:23; 215–32.
6. Drossman DA, Patrick DL, Mitchell CM, et al. Health-related quality of life in inflammatory bowel disease: functional status and patient worries and concerns. Dig Dis Sci 1989; 34:1379–1386.
7. Hommel KA, Denson LA, Crandall WV, et al. Behavioral functioning and treatment adherence in pediatric inflammatory bowel disease: review and recommendations for practice. Gastroenterol Hepatol 2008; 4:785–791.
8. Mittermaier C, Dejaco C, Waldhoer T, et al. Impact of depressive mood on relapse in patients with inflammatory bowel disease: a prospective 18-month follow-up study. Psychosom Med 2004; 66:79–84.
9. Varni JW, Seid M, Kurtin PS. Reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39:800–812.
10. Griffiths AM, Nicholas D, Smith C, et al. Development of a quality-of-life index for pediatric inflammatory bowel disease: dealing with differences related to age and IBD type. J Pediatr Gastroenterol Nutr 1999; 28:S46–S52.
11. Otley A, Smith C, Nicholas D, et al. The IMPACT questionnaire: a valid measure of health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr 2002; 35:557–563.
12. Mackner LM, Crandall WV. Psychological factors affecting pediatric inflammatory bowel disease. Curr Opin Pediatr 2007; 19:548–552.
13. Szigethy E, Carpenter J, Baum E, et al. Case study: longitudinal treatment of adolescents with depression and inflammatory bowel disease. J Am Acad Child Adolesc Psychiatry 2006; 45:396–400.
14. Sign 50: A Guideline Developer's Handbook, Methodology Checklists. Edinburgh: Scottish Intercollegiate Guidelines Network; 2004.
15. Critical Appraisal Skills Programme. Public Health Resource Unit. New York: Oxford University Press; 2004.
16. Burke P, Kocoshis SA, Chandra R, et al. Determinants of depression in recent onset pediatric inflammatory bowel disease. J Am Acad Child Adolesc Psychiatry 1990; 29:608–610.
17. Cotton S, Kudel I, Humenay Roberts Y, et al. Spiritual well-being and mental health outcomes in adolescents with or without inflammatory bowel disease. J Adolesc Health 2009; 44:485–492.
18. Engstrom I, Lindquist BL. Inflammatory bowel-disease in children and adolescents—a somatic and psychiatric investigation. Acta Paediatr Scand 1991; 80:640–647.
19. Engstrom I. Family interaction and locus of control in children and adolescents with inflammatory bowel disease. J Am Acad Child Adolesc Psychiatry 1991:30;913–20.
20. Janicke DM, Gray WN, Kahhan NA, et al. Brief report: the association between peer victimization, prosocial support, and treatment adherence in children and adolescents with inflammatory bowel disease. J Pediatr Psychol 2009; 34:769–773.
21. Loonen HJ, Grootenhuis MA, Last BF, et al. Measuring quality of life in children with inflammatory bowel disease: the IMPACT-II (NL). Qual Life Res 2002; 11:47–56.
22. Loonen HJ, Derkx BHF, Koopman HM, et al. Are parents able to rate the symptoms and quality of life of their offspring with IBD? Inflamm Bowel Dis 2002; 8:270–276.
23. Mackner LM, Crandall WV. Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease. J Pediatr Psychol 2006; 31:281–285.
24. MacPhee M, Hoffenberg EJ, Feranchak A. Quality-of-life factors in adolescent inflammatory bowel disease. Inflamm Bowel Dis 1998; 4:6–11.
25. Moody G, Eaden JA, Mayberry JF. Social implications of childhood Crohn's disease. J Pediatr Gastroenterol Nutr 1999; 28:S43–S45.
26. Perrin JM, Kuhithau K, Churhtai A, et al. Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics. J Pediatr Gastroenterol Nutr 2008; 46:164–171.
27. Van Der Zaag-Loonen HJ, Grootenhuis MA, Last BF, et al. Coping strategies and quality of life of adolescents with inflammatory bowel disease. Qual Life Res 2004; 13:1011–1019.
28. Burke PM, Neigut D, Kocoshis S, et al. Correlates of depression in new-onset pediatric inflammatory bowel-disease. Child Psychiatry Hum Dev 1994; 24:275–283.
29. Cunningham C, Drotar D, Palermo TM, et al. Health-related quality of life in children and adolescents with inflammatory bowel disease. Children's Healthcare 2007; 36:29–43.
30. De Boer M, Grootenhuis M, Derkx B, et al. Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2005; 11:400–406.
31. Engstrom I. Mental health and psychological functioning in children and adolescents with inflammatory bowel disease—a comparison with children having other chronic illnesses and with healthy children. J Child Psychol Psychiatry 1992; 33:563–582.
32. Gold N, Issenman R, Roberts J, et al. Well-adjusted children: an alternate view of children with inflammatory bowel disease and functional gastrointestinal complaints. Inflamm Bowel Dis 2000; 6:1–7.
33. Lindfred H, Saalman R, Nilsson S, et al. Inflammatory bowel disease and self-esteem in adolescence. Acta Paediatr 2008; 97:201–205.
34. Loonen HJ, Grootenhuis MA, Last BF, et al. Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease-specific questionnaire. Acta Paediatr 2002; 91:348–354.
35. Marcus SB, Strople JA, Neighbors K, et al. Fatigue and health-related quality of life in pediatric inflammatory bowel disease. Clin Gastroenterol Hepatol 2009; 7:554–561.
36. Otley AR, Griffiths AM, Hale S, et al. Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease. Inflamm Bowel Dis 2006; 12:684–691.
37. Szigethy E, Levy-Warren A, Whitton S, et al. Depressive symptoms and inflammatory bowel disease in children and adolescents: a cross-sectional study. J Pediatr Gastroenterol Nutr 2004; 39:395–403.
38. Ouvinen-Birgerstam P. Jag tycker jag ar. Stockholm:Psykologiforlaget; 1985.
39. Piers EV, Harris DB. Age and other correlates of self-concept in children. J Educ Psychol 1964; 55:91–95.
40. Treffers DA, Goedhart AW, Veerman JW, et al. Competentiebelevingsschaal voor Adolescenten. Amsterdam: Swets & Zeitlinger BV; 2002.
41. Landgraf JM, Abetz L, Ware JE. The CHQ User's Manual. 1st edBoston:The Health Institute, New England Medical Centre; 1996.
42. Landgraf JM, Abetz LN. The physical and psychosocial well-being of children representing three cultural groups: initial self-reports using the Child Health Questionnaire (CHQ-CF87). Psychol Health Qual Life: Recent Adv Theory Methods 1997; 12:1–16.
43. Kolsteren MM, Koopman HM, Schalekamp G, et al. Health-related quality of life in children with celiac disease. J Pediatr 2001; 138:593–595.
44. Cremeens J, Eiser C, Blades M. Characteristics of health-related self-report measures for children aged three to eight years: a review of the literature. Qual Life Res 2006;15:739–754.
45. Vogels T, Verrips GHW, Koopman HM. TACQOL Manual: Parent Form and Child Form. Leiden: Leiden Centre for Child Health and Pediatrics; 2000.
46. Diagnostic and Statistical Manual of Mental Disorders, 3rd ed, rev. Washington, DC: American Psychiatric Association; 1987.
47. Hodges K, Kline J, Fitch P, et al. The child assessment schedule: a diagnostic interview for research and clinical use. Cat Selected Documents Psychol 1981; 11:56.
48. Orvaschel H, Puig-Antich J, Chambers W, et al. Retrospective assessment of pre-pubertal major depression with K-SADS-E. J Am Acad Child Psychiatry 1982; 21:392–397.
49. Kaufman J, Birmaher B, Brent D, et al. Schedule for Affective Disorders and Schizophrenia for School Age Children: Present and Lifetime Version (K-SADS-PL). Pittsburgh, PA: Department of Psychiatry, University of Pittsburgh School of Medicine; 1996.
50. Kovacs M. Children's Depression Inventory (CDI). New York:Multi-health Systems; 1992.
51. Reynolds CR, Richmond BO. Revised Children's Manifest Anxiety Scale Manual. Los Angeles:Western Psychological Services; 2000.
52. Achenbach TM. Manual for the Child Behaviour Checklist (CBCL). Burlington, VT:University Associates of Psychiatry; 1988.
53. Achenbach TM. Manual for the Youth Self-report. Burlington:University of Vermont, Department of Psychiatry; 1991.
54. National Institute for Health and Clinical Excellence Depression in Children and Young People. National Clinical Practice Guideline Number 28. London: British Psychological Society and Royal College of Psychiatry; 2005.
55. Canning EH. Mental disorders in chronically ill children: case identification and parent-child discrepancy. Psychosom Med 1994; 56:104–108.
56. Carr A. The Handbook of Child and Adolescent Clinical Psychology: A Contextual Approach. 2nd edLondon:Routledge; 1999.
57. Armitage EL, Aldhous MC, Anderson N, et al. Incidence of juvenile-onset Crohn's disease in Scotland: association with northern latitude and affluence. Gastroenterology 2004; 127:1051–1057.
58. Green C, Elliott L, Beaudoin C, et al. A population-based ecologic study of inflammatory bowel disease: searching for etiologic clues. Am J Epidemiol 2006; 164:615–623.
59. Hyams JS, Ferry GD, Mandel FS. Development and validation of a pediatric Crohn's disease activity index. J Pediatr Gastroenterol Nutr 1991; 12:439–447.
60. Turner D, Otley AR, Mack D, et al. Development, validation, and evaluation of a pediatric ulcerative colitis activity index: a prospective multicenter study. Gastroenterology 2007; 133:423–432.
61. Mackner LM, Crandall WV. Oral medication adherence in pediatric inflammatory bowel disease. Inflamm Bowel Dis 2005; 11:1006–1012.