Inflammatory bowel disease (IBD), comprising ulcerative colitis (UC), Crohn disease, and unclassified IBD (IBD-U), is characterised by chronic and relapsing inflammation of parts of the gastrointestinal (GI) tract, and its manifestations may include abdominal pain, bloody diarrhoea, and/or nausea and vomiting (1). IBD can place many demands on those affected by it, including administration of medication, dietary modifications, ongoing medical appointments, school absences, managing symptoms in social situations, and surgery (2,3).
The Royal College of General Practitioners, OPCS and DHSS (4) assert that GI symptoms account for about 1 in 12 consultations in adult primary health care. Griffiths and Hugot (5) found that there is an estimated incidence of 5 to 10 new cases per 100,000 each year and that approximately 20% to 25% of these diagnoses involve children younger than 18 years. Benchimol et al (6) assert that there is an accelerated increase in the incidence of childhood IBD. One prospective study by Sawczenko et al (7) estimated that the incidence is actually 5.2/100,000/year in children younger than 16 years in Ireland. Furthermore, it is estimated that the prevalence of IBD is set to increase by ≥20% by the year 2020 (8).
Research suggests that IBD in youth is associated with various negative sequelae including anxiety, depression, and diminished quality of life (QOL). Empirical findings in the area have the potential to refine services to ensure that they target the specific needs of this vulnerable population.
One meta-analysis concluded that youths with IBD had higher rates of depressive and internalising disorders than youths with other chronic conditions. They also demonstrated higher internalising symptoms, lower QOL, and lower social functioning than healthy youths (2). In addition, it has been found that youths with IBD have lower health-related QOL than all other primary care patients (9); however, older youth age appears to be associated with greater involvement in IBD management, but time since diagnosis does not (10).
With regard to the specific areas of life that are affected by IBD, Timmer et al (11) propose that it has a negative effect on all realms of QOL and others have suggested that the greatest impairment may be in emotional behaviour (Drossman et al (12)). There is a lack of information around this because most studies conducted thus far have focused on health-related QOL and psychosocial functioning, but few have looked at disease-specific QOL. There are a few studies that have used the IMPACT-III questionnaire and its predecessor as an outcome measure when conducting trials on certain drug therapies for children with IBD (13–15). The IMPACT-III is a disease-specific measure of QOL developed for use in paediatric populations with IBD (16). In addition, some studies have been conducted with the IMPACT-I, IMPACT-II, and IMPACT-III to establish the reliability and validity of the questionnaire (16–18). Mean QOL scores have been established for these populations, and findings indicate that QOL seems to be lowest in the first 6 months after diagnosis and that poorer QOL is generally associated with increased disease activity (19). More studies need to be conducted in this regard with the up-to-date IMPACT-III questionnaire for comparisons to be made across populations and to identify the specific areas of QOL that are mainly affected and under what circumstances. For instance, in a study by Richardson et al (20) it was found that English youths expressed greater disease-related concern than Canadian youths on approximately one-fifth of the items on a predecessor of the IMPACT-III questionnaire.
Anxiety is another construct that has been found to be significantly related to IBD in recent research. For example, 1 study reported that the prevalence of “severe” levels of anxiety was nearly 4 times greater in populations with GI symptoms compared with patients without GI symptoms (19.4% vs 5.6% (9)). In addition, with each additional GI symptom, anxiety increased, and specific GI symptoms such as nausea, gas, and indigestion were particularly associated with anxiety.
Greenley et al (2) recommend that clinical attention to internalising disorders, QOL, and social functioning may be particularly salient in the context of paediatric IBD. Unfortunately, there does not appear to be published literature that examines the effect of this illness on Irish youths with respect to their QOL and anxiety levels. In addition, most previous QOL studies used generic health-related QOL instruments rather than disease-specific ones and tended to focus on adults. Thus, there is still limited knowledge about the effect of IBD on this population.
As noted above, there is little empirical research conducted on the psychological effect of IBD on youths. The aims of this study are 4-fold:
1. To provide a profile of the QOL and anxiety levels of youths with IBD in an Irish clinical population
2. To examine the clinical utility of the IMPACT-III questionnaire (16) as a screening tool for patients who require referral to child psychology/psychiatry services
3. To investigate which areas of QOL are particularly pertinent for this population
4. To determine the collective and individual predictive utility of age, time since diagnosis, and subtype of IBD as predictors of QOL
PATIENTS AND METHODS
Participants were youths from various counties in Ireland who were attending or had attended the GI clinic in an Irish national hospital for IBD. Of the 215 youths targeted in the postal sweep, 79 responded and were included in the analyses. Forty-six (58.2%) were boys and 33 (41.8%) were girls. The ages ranged from 9 to 17 years with a mean age of 13.96 years (standard deviation [SD] 2.26). Forty-one (51.9%) had Crohn disease, 23 (20.1%) had UC, and 12 (15.2%) had IBD-U or “other” diagnoses. The mean time since diagnosis was 3.76 years (minimum 1 month, maximum 16 years), SD 2.92. Two measures were included in the postal battery.
IMPACT III Scale
The scale, developed by Otley et al (16), consists of 35 items, which aim to measure the health-related QOL of youths with IBD under 6 domains: bowel symptoms, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions. Respondents are presented with various questions about how much their IBD affects their life currently (eg, “How much does it bother you that you have an illness that does not just go away?”), and responses are elicited on a 5-point Likert scale from 1 (eg, “very much”) to 5 (eg, “not at all”), with higher scores indicating better QOL. The wording of the response options changes slightly depending on the question, but scoring remains the same. Possible total scores range from 35 to 175. There is also a section containing open-ended questions yielding qualitative information.
The questionnaire has been found to be a reliable (α = 0.96) and valid reflection of health-related QOL of older children and adolescents in Canada (16) and is prescribed for self-administration with youths between the ages of 9 and 17 years.
Clinical cutoff or norm data have not been established for the IMPACT-III. A cutoff value for remission has been established at 143, with a 13-point reduction reflecting a partial response to an intervention (17,18). In the present study, Q.29 (“Are you happy with your life?”) was used as an indicator of risk and participants with noticeably low scores overall, that is, under 110 would be contacted and offered psychological input.
Spence Children's Anxiety Scale
The Spencer Children's Anxiety Scale (21) consists of 44 items that collectively measure the severity of anxiety symptoms in youths. Thirty-eight items reflect specific symptoms of anxiety and 6 function as positive filler items to reduce negative response bias. The scale assesses 6 domains of anxiety: generalised anxiety, panic/agoraphobia, social phobia, separation anxiety, obsessive–compulsive disorder, and physical injury fears. Participants were asked to rate the degree to which they experience symptoms on a 4-point frequency scale from 0 (“never”) to 3 (“always”): Possible total scores range from 0 to 114. A custom-designed questionnaire was also included in the battery that collected demographic and health information.
The study was cross-sectional, yielding measures of anxiety and QOL. Descriptive statistics were used in this regard. In addition, a hierarchical multiple regression analysis was carried out to investigate what factors help predict QOL in paediatric IBD. Predictors were age, duration of illness, level of total anxiety, and medical diagnosis (ie, Crohn, UC, IBD-U).
Paediatric consultants and clinical nurse specialists of the GI clinic in the hospital were advised of the study and their permission was sought to contact patients and families to participate in the proposed study. Patients ages 9 to 17 years attending the clinic or in the clinic database were informed of the study and invited to participate via postal questionnaire.
Potential participants were sent parent consent and child assent forms, which outlined the purposes of the study and the participant's rights to withdraw at any time. All of the potential participants also were provided with the questionnaire pack. They were advised to return these materials by post to the hospital should they decide to participate and were notified that no penalty would be incurred for nonparticipation in or withdrawal from the research.
This study received ethical approval from the research ethics committee of the service provider. Information sheets and informed consent documents were constructed to be age appropriate. No incentive was offered for participation in the study and all of the participants were fully informed of their rights as research participants. Respondents were allocated a numerical code to ensure anonymity. If any child was identified as needing immediate psychological input based on parental feedback or the questionnaire-specific cutoffs, then they were referred to the paediatric psychology department in the hospital.
SPSS version 14 (SPSS, Chicago, IL) was used to analyse all of the data. Normality of distribution was checked, and despite transformations of the data, it was significantly non-normal. Hence, data remained in their raw state.
The IMPACT, measuring QOL, had high internal reliability (α = 0.90). The mean IMPACT score was 133.77 (SD 18.34), with a higher score indicating a better QOL. Fifty (63.3%) participants had total effect scores below the cutoff of 143 established for remission in previous research. One participant reported being “very unhappy” with life and 4 participants were “unhappy” with their life. The means and SDs for each subscale are presented in Table 1.
The Spence Children's Anxiety Scale mean score was 18.77 (SD 11.3), with a higher score indicating higher anxiety. The scale was found to have high internal reliability (α = 0.84). When compared with age-appropriate norms and t scores (23), of the total group, 31 (39.24%) of the sample had elevated anxiety symptoms on ≥1 subscales and 5 (6.33%) had elevated total anxiety scores. The means, SDs, and number of participants with elevated scores for each subscale are given in Table 2.
For this regression analysis hierarchical (“enter” method) was used to evaluate how well the predictor variables age, the duration of illness in years, and the type of IBD (Crohn, UC, IBD-U), and total anxiety predicted the criterion variable: QOL as measured by the IMPACT-III. Age and duration of illness were entered in the first step to parcel them out. Categories of IBD disease were transformed into dummy variables, whereby Crohn was used as the baseline (0) because it represented the majority of the sample (22). The 2 dummy variables were named “Crohn versus UC” and “Crohn versus IBD-U.” These were then entered in the second step, and total anxiety in the third step. Using the hierarchical method, the regression equation with the predictors (age, duration of illness in years, Crohn vs UC, Crohn vs IBD-U and total anxiety) significantly predicted IMPACT-III scores (R2 = 0.215, adjusted R2 = 0.158, F(5,68) = 3.732, P = 0.005) accounting for 15.8% of the variance in QOL. Anxiety was the only variable that contributed significantly to this model (P = 0.001), adding 15.56% of the variation in QOL after controlling for age, duration of illness, and diagnosis. In Table 3, betas of the predictor variables with the criterion variable, IMPACT-III score, are shown.
The multiple regression results suggest that those with higher levels of anxiety (t = −3.453, P = <0.005) have poorer QOL. The assumptions and requirements underpinning hierarchical multiple regression were met.
Feedback from the comment section of the IMPACT-III highlighted the variability of symptoms, with numerous participants reporting that the time of filling out the questionnaire was not necessarily reflective of how they would answer at another time. The main ways in which it appears to affect participants’ lives include many seeing IBD as an embarrassment, tending to hide it or the fact that they take medication from their friends, and annoyance at not being able to eat and drink the things that they want. Others posed questions such as whether there is a cure for IBD, if it is contagious, whether they could have children in the future, whether IBD is hereditary, wondering how they contracted IBD, why they experience certain symptoms such as tiredness, how important their diet is, and whether their symptoms will get worse as they get older.
This study set out to obtain the current profile of QOL and levels of anxiety seen in a paediatric sample of youths with IBD. It was not possible to compare the mean QOL scores found with previous studies using earlier versions of the IMPACT-III, because these earlier questionnaires differed in their scoring structure. However, the mean QOL was similar to that reported by Hill et al (19) (M = 131), who used the IMPACT-III questionnaire. The areas in which participants indicated the most effect on QOL appeared to be social functioning, followed by bowel symptoms and emotional functioning, treatment interventions, body image, and systemic symptoms. These results must be interpreted with caution because scores appeared relatively similar given the range of SDs. This is in line with assertions by Timmer et al (11) that IBD affects all areas of QOL. In addition, generalisations may be difficult to make given the variability in symptoms that the participants were experiencing at the time of filling out the questionnaire and the individuality of the experience for them, as indicated by their qualitative feedback. Thus, it may be more useful to use the IMPACT-III on an individual basis to examine responses to treatments and identify the need for any psychosocial interventions.
With regard to symptoms of anxiety, the results were complex. Although fears of physical injury was the most common problem, followed jointly by social phobia and obsessive-compulsive disorder, based on clinical cutoffs, generalised anxiety appeared to have the highest mean score of all of the subscales among participants, followed closely by social phobia. This indicates that although certain participants have extreme anxiety in particular areas, the majority of this sample have elevated levels of generalised anxiety and social phobia relative to the other subscales.
We also intended to investigate whether certain factors helped predict QOL such as anxiety level, age, duration of illness, and type of IBD. It was found that anxiety level was the only factor that predicted QOL in this regression model, which is consistent with previous findings.
Given that the recognition of mental health problems in primary care is often difficult (24), the knowledge of the co-occurrence of anxiety and lower QOL with GI symptoms can help to enhance physicians’ attention toward these issues in patients with IBD, and can lead to routine screening and referral to appropriate psychology services for treatment when indicated. This is consistent with recommendations made by Mussell et al (9). The questions posed by participants also indicate that greater information needs to be provided to youths about their illness and its management.
It is particularly pertinent to conduct research of this nature in the Irish culture because the cost of the treatment of IBD here is the third highest in Europe (25). It is known that the co-occurrence of mental health difficulties can adversely affect the course of IBD (26,27), and domains such as medication adherence in other illnesses (28). In addition, few psychological interventions have been noted in the research. Thus, although this is a preliminary study with largely descriptive results, it is a stepping stone to future research, screening, and possible interventions to alleviate the psychological distress that appears to exist among this population. This may prove to be cost-effective in promoting positive health behaviours and associated improved medical outcomes.
These results should be interpreted within the context of several limitations. Ideally, the present study should have compared this sample with a control group or youths from another clinic in the hospital; however, because of time constraints it was not possible on this occasion. In addition, only 36.7% of the population targeted responded to the questionnaire. This may have resulted in a response bias whereby those who were functioning relatively well were more likely to participate in the research. It was believed, however, that follow-up telephone calls or questions to ascertain patients’ reasons for nonparticipation would place them in a compromising situation whereby they may have felt pressure from the researchers to participate. Thus, this avenue was not explored.
We do not have any information on personality variables or reasons why certain participants have clinically significant symptoms over and above others with the same illness. Non-normality of distribution is also a limitation of the present research because the findings cannot be generalised beyond this sample. This calls for further research and screening of all of the patients attending GI clinics to ascertain those who are having significant difficulties.
There were some limitations to the use of the IMPACT-III questionnaire in the present research design. The cutoffs reported by Otley et al (17,18) for remission and partial response would be more useful when looking at interventions for IBD and any resulting effect on QOL. In obtaining a cross-sectional profile of QOL, it offers little information because there is no established clinical cutoff or norms for comparison. Thus, only “good” and “not so good” QOL could be estimated. Despite this, the IMPACT-III is a promising research tool and has proven to be a useful clinical tool in the current hospital setting, being used to generate discussion in IBD support groups and for nursing staff to identify youths coming in the clinic for whom IBD is having a major effect on their day-to-day functioning.
Future research should examine the efficacy of individual and group therapy or information and support groups in reducing levels of anxiety and, perhaps by improving coping skills, to see a resultant increase in QOL in youths with IBD.
Although the IMPACT-III has been established as reliable and valid, only tentative conclusions can be drawn about its utility in a study such as this because of the unavailability of a comparative sample. Future research should focus on establishing norms for this measure so that more definitive conclusions can be drawn.
Special thanks to all of the staff on the gastroenterology team in Our Lady's Children's Hospital Crumlin who enabled this research to be carried out, especially Prof Billy Bourke, consultant pediatric gastroenterologist, and Mary Hamzawi, clinical nurse specialist.
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