Article Text

Children and young people with inflammatory bowel disease attend less school than their healthy peers
  1. Claire Barnes1,
  2. James John Ashton1,2,
  3. Florina Borca3,
  4. Mick Cullen1,
  5. Dawn-Marie Walker4,
  6. Robert Mark Beattie1
  1. 1 Department of Paediatric Gastroenterology, Southampton Children's Hospital, Southampton, UK
  2. 2 Human Genetics and Genomic Medicine, University of Southampton, Southampton, UK
  3. 3 NIHR Southampton Biomedical Research Centre, University Hospital Southampton, Southampton, UK
  4. 4 Health Sciences, University of Southampton, Southampton, UK
  1. Correspondence to Dr James John Ashton, Paediatric Medical Unit, University Hospital Southampton, Southampton SO16 6YD, UK; j.ashton{at}soton.ac.uk

Abstract

Objective Chronic diseases, such as inflammatory bowel disease (IBD), can impact negatively on education and social development. Examining the impact of IBD on school/college attendance for children and young people (CYP) is vital to provide targeted support to patients, families and schools.

Methods We performed a cross-sectional survey to determine the school/college attendance rates, the reasons for absence related to IBD and facilitators or barriers to school/college attendance. In a subset of patients followed up locally, we performed a detailed review of hospital attendance data to assess healthcare burden.

Results Two hundred and thirty-one questionnaires were given to CYP with IBD aged 5–17 years. Response rate was 74% (final sample 169). The median school/college attendance rate was 92.5%, significantly lower than all children in England (95.2%). 39.6% of children with IBD were persistently absent, defined nationally as missing 10% or more of school. Only five children (3%) had a 100% attendance record. Increasing age and use of monoclonal therapy were predictors of poor school attendance. Concerns about feeling unwell at school/college, access to toilets, keeping up with work and teachers’ understanding of IBD are the main issues for CYP with IBD. There was a significant negative correlation between number of days in hospital and school attendance.

Conclusion IBD has a significant impact on school/college attendance, with hospital attendance, disease burden and school difficulties being major factors. Employing strategies to minimise healthcare burden and developing a partnership between health and education to support children with IBD will serve to facilitate school/college attendance.

  • inflammatory bowel disease
  • school
  • education
  • paediatric
  • chronic illness
View Full Text

Statistics from Altmetric.com

What is already known?

  • Children and young people with inflammatory bowel disease (IBD) miss more school than their healthy peers.

  • There is a strong link between school absenteeism and underachievement.

  • Disease, demographic and psychosocial factors contribute to lower school/college attendance rates.

What this study adds?

  • Significantly more children and young people with inflammatory bowel disease are persistently absent from school/college (39.6%) compared with all children in England (11.2%).

  • Concerns for those with IBD attending school/college include feeling unwell, access to toilets, keeping up with work and teachers’ understanding of IBD.

  • Important measures identified as helping with school/college attendance include appointments/treatments after school, gastro nurses educating teachers on IBD and school sending work home when absent.

Introduction

Inflammatory bowel disease (IBD) is a chronic, multifactorial condition, encompassing Crohn’s disease, ulcerative colitis and IBD unclassified. An estimated 25% of IBD presents in childhood or adolescence,1 2 with a twofold increase in incidence in the past 20 years.3 4 This chronic condition can place a significant burden on children and adolescents, impacting physical, social and psychological well-being, and education.5–9 IBD may adversely affect school or college attendance which is associated with a negative effect on development.10–14 Regular school attendance helps shape later life outcomes.11

Multiple studies examine the impact of IBD on health-related quality of life,15–19 showing that the symptoms and complications can have a negative impact on the daily lives of children and young people (CYP) and their families, affecting all domains of health. However, some data suggest that health-related quality of life and education attainment are not always impaired in children with IBD if coping and support strategies are effective.20–22

Studies examining children with chronic illness, including those with cancer, asthma, heart disease, cystic fibrosis and gastrointestinal disease show lower school attendance.10 23 Considerable differences in education exist between illnesses, although significant themes emerge across the spectrum, including worse school experiences, performance, outcomes and lowered attendance rates.14 24 Studies that specifically examine IBD also demonstrate these patients miss more school than their healthy peers,25–27 although this is not necessarily linked to poorer educational outcomes.28 Lower school/college attendance rates are correlated with disease, demographic and psychosocial variables.25 29 30 However, disease factors/treatments are not predictive of worse educational outcomes.25 28 30 31

The aim of this study was to examine the extent to which IBD affects school/college attendance for children, determine contributing factors for absences and perform thematic analysis of CYP comments.

Methods

Study population

The Paediatric Gastroenterology Service at University Hospitals Southampton (UHS) provides specialist care for over 650 000 children, covering 12 regional hospitals. CYP are managed in conjunction with local clinical teams as part of a network. CYP with IBD are typically seen 3 monthly in the year following diagnosis, with well controlled patients seen 6 monthly, or, if very well, yearly. Patients with IBD diagnosed prior to 1 January 2018 and of school/college age were identified from our in-house IBD database.

Questionnaire

A questionnaire (online supplementary file 1) was constructed to determine the school/college attendance rates in the last year, the reasons for absence related to IBD, facilitators/barriers to school/college attendance and current treatments. As no validated tool is available, a questionnaire was designed with input from several CYP with IBD and their families, a head teacher and members of the paediatric gastroenterology team. All school children in England receive their attendance as a percentage on a yearly school report, enabling accurate and reliable collection of attendance figures. All eligible patients and their families were invited to complete the questionnaire while attending hospital for clinic, day case or inpatient management. Any patients with IBD who had not been given a questionnaire within 4 months of data collection commencing were mailed with a covering letter and enclosed prepaid return envelope. All questionnaires were returned in a sealed envelope to a tray in the clinic or ward or to the post room. This was to ensure that CYP answers were not influenced by giving completed questionnaires to members of the clinical team.

CYP and their families were asked for the percentage school attendance for the previous academic year, or if unknown, the number of school/college days missed. For those patients/families who did not know the exact percentage, an estimate of school attendance was calculated based on the number of school days missed. For those missing >38 days per year, attendance was assumed to be 80%, a likely overestimate of attendance, to avoid biasing results to lower attendance.

Free text comments on the questionnaire were collated and manually searched for recurrent themes. Following classification of themes, a correlation/enrichment of these themes in different groups was identified through structured thematic analysis.

Review of hospital attendance data for local patients

Detailed review of hospital attendance was performed for all patients with IBD whose local hospital was Southampton Children’s, that is, receiving specialist and local care from the same unit. For each patient, all hospital clinic appointments, admissions, reviews and investigations from September 2017 to August 2018 inclusive, were identified and recorded from the patient’s electronic health record. These data were used to calculate the number of days of attendance for each category of healthcare. The overall total number of days of hospital attendance for the year was calculated, removing duplicates where children had more than one attendance per day (eg, clinic and radiology on the same day). These data were then compared with school attendance data.

Statistical analysis

To assess differences between our patients with IBD and the general population, school attendance figures for England were obtained from the Department for Education.32 These data were converted into number of school days missed across England for all children and compared with the number of days missed by children in our IBD sample using a χ2 test (online supplementary table 1). The number of children who were persistently absent from school (defined by the Department for Education as missing 10% or more) were compared with the number persistently absent across England through a χ2 test (online supplementary table 2). National attendance figures are not available for students aged >15 years at the start of the academic year. Following discussion with the statistics team at the Department for Education, data for school attendance were used as a comparison for college attendance.

Median values were compared using the Kruskal-Wallis Test. A stepwise forward multivariable linear regression was used to assess factors associated with school attendance. Pearson’s correlation was used to assess the relationship between hospital attendance and school attendance.

All statistical analysis was performed with SPSS (IBM V.25). Statistical significance was considered to be p≤0.05.

Results

Questionnaires were distributed to 231 patients, 151 in hospital and 80 by post. There was an overall response rate of 74% (97% for questionnaires distributed in hospital and 30% postal). Two patients were excluded as one was home-schooled, and one had dropped out of school and went into employment, giving a final sample of 169 (table 1). The majority of questionnaires were completed with direct input from CYP, with 64% of questionnaires completed by the parent and child, 30% by CYP alone and 6% by the parent. The only significant differences between the questionnaires returned in hospital and returned by post were the duration of disease, 2.32 years vs 4.53 years, p=0.007, and the proportion of patients on immunomodulator therapy, 69.9% vs 45.8%, p=0.02 (online supplementary table 3).

Table 1

Demographic and disease characteristics of study population and subgroup of local Southampton patients

School attendance

State educated school children in England are expected to attend 191 days of school per year. The median school/college attendance rate overall for CYP with IBD was 92.5%. This is significantly lower than average attendance in England where the attendance rate is 95.2%322 test=515.02, p<0.0001) (online supplementary table 1). The median attendance for primary school children was 95% vs 92.5% for secondary school/college students. This difference was not significant (p=0.071).

Children classified as persistently absent

39.6% (n=67) of patients missed 10% or more of school/college, meeting the Department of Education criteria for being persistently absent.32 This is significantly more than all primary and secondary school children in England, where the rate is 11.2%322=137.492, p<0.00001). In our dataset, 33% (8/24 patients) of primary school children were persistently absent vs 40% (58/145 patients) of secondary/college students, greater than the rate of 8.7% and 13.9%, respectively, in the general school population.32 Only five CYP (3%) had 100% attendance rates, 45.6% (77 patients) missed >3 weeks of school (<92% attendance). Almost half (44%, n=74) of respondents reported that all their absences were due to IBD, 18% (n=30) reported ¾ or more absences due to IBD, 13% (n=22) reported 50%–74% absences due to IBD and the remainder (n=43) less than 50%.

Factors associated with school attendance

Following multivariable linear regression, the significant predictors of reduced school attendance were increasing age (β-coefficient −0.203, 95% CI −0.350 to −0.057, p=0.007) and use of monoclonal therapy (β-coefficient −0.212, 95% CI −0.358 to −0.066, p=0.005) (table 2). Non-significant variables were age at questionnaire, age at diagnosis, sex, thiopurine/methotrexate treatment, diagnosis (CD, UC or IBDU) and time with disease. Regarding monoclonal therapy, considering all patients, 80% (n=57) were on Infliximab, 11% (n=8) Adalimumab, 8% (n=6) Ustekinumab and 1% Vedolizumab (n=1). This reflects >81% of patients receiving therapy as an infusion, including all Infliximab patients, the single patient on Vedolizumab (who had also been on Adalimumab during the year) and induction therapy with Ustekinumab. When separating monoclonal usage into infusions and injections, neither was significant in the regression model, infusion β-coefficient −0.142, p=0.06 and injection β-coefficient −0.136, p=0.073.

Table 2

Multivariable linear regression for school/college attendance

Commonly reported factors impacting on school/college attendance included hospital appointments, feeling unwell and access to a toilet. Improved access to after school appointments, better teacher/school education and sending work home were all reported as facilitators to improve school attendance.

The heat map (figure 1) illustrates the frequency of responses, highlighting factors influencing school attendance.

Figure 1

Heat map to illustrate factors affecting school/college attendance. Heat map demonstrating the frequency of responses for four questions—the deeper the colour red, the higher the frequency. IBD, inflammatory bowel disease.

Thematic analysis of free text comments

Free text comments were included on 38% of questionnaires. Figure 2 illustrates a word cloud of the comments and table 3 illustrates the main themes with direct quotes.

Figure 2

Word cloud of questionnaire free text comments. A graphical representation of word frequency from the questionnaire free text comments. The size of the word indicates its frequency; the more often a word appears in the text, the bigger and bolder it appears in the word cloud. IBD, inflammatory bowel disease.

Table 3

Thematic analysis of questionnaire free text comments

Review of hospital attendance data for Southampton patients

A review of hospital attendance data for all local patients with IBD included 39 patients. The questionnaire response rate for this group of patients was 87% (n=34).

In this group, there were a total of 416 hospital attendance days from September 2017 to August 2018. Hospital attendance rates for individuals ranged from 2 to 38 days, with a median of 9 days (online supplementary table 4). Clinic appointments accounted for the most days (n=275), then day case admissions (n=117). The least number of days was for inpatient admissions (n=24). Inpatient admission days reflect all unplanned admissions and account for only 5.8% of the total hospital attendances. The median number of days attended per patient for monoclonal treatment/review was 7 days (for those on monoclonal therapy), 5 days for attending clinics and 1 day for endoscopy, radiology investigation, day case or inpatient admissions.

There was a significant negative correlation between the number of days in hospital and school attendance, Pearson’s correlation coefficient −0.373, p=0.037.

Based on these data, we hypothesised that if days off for hospital attendance are excluded, school attendance would increase by a median of 9 days per child, or 4.7% attendance, based on 191 school days per year. This would increase the median attendance to 97.2%, exceeding the national average in the general population.

Discussion

Median school attendance is significantly reduced in children with IBD, compared with the general school attendance in England. Almost 40% of children with IBD are classified as persistently absent, missing 10% or more of school/college, significantly greater than the rate for school children in England (11.2%). Only five CYP with IBD achieved 100% attendance . Poor school attendance is largely driven by attending hospital for appointments and treatments. Patients requiring monoclonal therapy/older age have a significantly lower school attendance in the multivariate analysis. Self-reported factors associated with inability to attend school were frequent appointments, lack of toilet access and feeling unwell. Respondents felt improved school attendance may be achieved with better teacher/school education, better toilet access and hospital appointments after school .

These findings are in line with other studies showing that children with IBD miss significantly more school than their healthy peers.25–27 Mackner et al 25 found that 20% of those with IBD missed >3 weeks of school (<92% attendance) compared with 4% of healthy adolescents, while Assa et al 26 found that the difference was greater, with 64% of those with IBD missing >3 weeks compared with 3% of healthy adolescents, although they had a relatively small sample of patients with IBD. In our study, 45.6% (77 patients) missed >3 weeks of school (<92% attendance). Nevertheless, Eloi et al 27 found that patients with IBD were absent 4.8 days per year on average, vs 3.2 for the non-IBD group.

If days off for hospital attendance were excluded, the school attendance rates were increased to 97.2%, exceeding the national average in England. However, these data are hypothetical and would require validation by moving hospital appointments to outside school hours in a cohort. Similarly, Eloi et al 27 found after excluding absences for scheduled care, the rate of school absenteeism of patients with IBD was significantly lower than the non-IBD group.

Increasing age and the use of monoclonal therapy are predictors of reduced school attendance. This is consistent with Carreon et al’s30 study examining adolescents with IBD, greater disease activity (p<0.01 in child report and p=0.03 for parent report) and older age (p=0.03 for child report and p=0.02 for parent report) were the most significant predictors of poorer school attendance.

Monoclonal therapy is a marker of greater disease severity which leads to a higher healthcare burden. When separating infusions in hospital and injectable monoclonal therapy at home, neither was independently predictive of school attendance, indicating that it is not only the increased number of hospital attendances for infusions that contributes to worse attendance. This is revealed in the detailed review of the local hospital attendance data, with monoclonal therapy being the second most common reason for hospital attendance. Likewise, Eloi et al 27 showed greater absenteeism in those on biological treatment. This has implications for practice in terms of which type of monoclonal treatment is used and when infusions should take place (evenings or weekends). Injected forms of treatment such as adalimumab and ustekinumab can be administered at home, reducing time off school/college. Only 19% of our patients were on an injectable form of monoclonal, with 81% attending hospital 6–9 times per year for infusions, accounting for a large number of missed school days. Facilitating shared care with regional hospitals reduces travelling time and minimises time out of school.

Southampton hospital attendance data showed a significant negative correlation between number of days in hospital and school attendance. Most absences for IBD are for hospital appointments (online supplementary table 3). This is consistent with previous studies,26 30 33 34 demonstrating IBD-related clinic visits were the most frequent form of healthcare utilisation. Overall the majority (62%) report that at least ¾ of their absences were due to IBD. This is a likely underestimation of the true figure, as families may not have linked certain absences, such as symptoms of stress or infections due to immunosuppression to IBD.

These findings illustrate the need for after school/college appointments, a measure identified by respondents as the most important factor that would improve attendance. Also, patients are likely to benefit from tailored clinic appointment intervals, or perhaps telephone appointments, depending on their disease activity.35

Feeling unwell at school/college is the biggest concern for these patients (figure 1). The Children and Families Act36 outlines the duty of schools’ to ensure pupils with medical conditions are supported.37 However, the literature indicates a gap in the knowledge of schools about chronic diseases, such as IBD.38 39 This illustrates the vital role of effective liaison between health and education, with the provision of training/support, further highlighted by many responses indicating nurse specialists educating teachers could result in improved attendance (figure 1). Other school-related issues can be addressed by the provision of toilet passes, sending work home and IT portals to access lessons missed. Nevertheless, there are contrasting reports from families on their experiences; some describe a lack of awareness, understanding and support, which is congruent with research.31 Others reveal that schools are accommodating and supportive and this may reflect better sharing of information by health. A significant proportion reported no issues with IBD and school/college. Absenteeism at diagnosis and early treatment is common, associated with the lower health-related quality of life and increased disease severity.16

The 74% questionnaire response rate of the questionnaire is comparable to previous studies and constitutes a relatively large sample size. School attendance, medication use and disease subtype data were not present for those who did not return a questionnaire. We have compared those returning questionnaires in hospital versus post, with the only significant differences between groups being time with disease and immunomodulator use. However, despite this, it was not possible to compare those not returning questionnaires in both groups as data and implied consent was not available for these CYP, potentially meaning that the higher return rate of hospital questionnaires may have introduced a bias. There was typical representation of disease severity indicated by the proportion of patients on monoclonal (42%) or thiopurine/methotrexate treatment (66.9%). Assessing longitudinal disease activity is complex and lacks a validated score to reflect disease activity over a whole year. We have therefore used medication usage as a proxy of disease severity; however, we recognise that many patients on monoclonal therapy will have well controlled disease. The questionnaire relied on self-report, with the potential for recall bias, without external validation of school attendance. We were unable to compare to local attendance data as the 12 regional hospitals covered by our service are situated in Hampshire, Dorset, Isle of Wight, West Sussex, Surrey, Wiltshire and the Channel Islands; there is no single education authority reporting figures for this area. Some responses may have been affected by fears that their reasons for missing school were not good enough, with the consequent risk of further action from schools. It was not possible to control for factors such as income inequality, lone parenting or young carer responsibilities, factors known to impact school/college attendance.40 41 There were relatively low numbers of young people attending college (11.8%) in this cohort, and a significantly smaller proportion attending primary school (14.2%) compared with secondary school/college (85.8%). We recognise a lower response rate from postal questionnaires leads to potential confounding of attendance figures; however, characteristics of responses from both patients returning questionnaires by hand and by post are highly comparable.

Conclusion

IBD negatively impacts on school/college attendance, with hospital attendance, disease burden and school difficulties being major barriers. Needs of children with chronic illnesses must be addressed by ensuring effective partnership between education and health and targeting those with risk factors for poor attendance with preventative measures. Using strategies to minimise healthcare burden and provide more integrated care can directly impact service provision and facilitate school/college attendance for CYP with IBD.

References

View Abstract

Supplementary materials

Footnotes

  • Twitter @james__ashton, @RMBeattie50

  • Contributors CB, JJA and RMB conceived the study. The study was designed by CB, JJA, DMW and RMB. Data were collected by CB with help from JJA, FB and MC. Data were analysed by CB and JJA. CB wrote the manuscript with help from all authors. All authors approved the final version prior to submission.

  • Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors. JJA is funded by an Action Medical Research Clinical fellowship and by a personal ESPEN fellowship.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The study was registered as a service evaluation following review by UHS Research and Development Department. Ethical approval for the study was obtained from the University of Southampton.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.