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Review
Transitioning patients with inflammatory bowel disease (IBD) from adolescent to adult services: a systematic review
  1. Tilean Clarke,
  2. Joanne Lusher
  1. School of Psychology, Faculty of Life Sciences and Computing, London Metropolitan University, London, UK
  1. Correspondence to Dr Joanne Lusher, School of Psychology, Faculty of Life Sciences and Computing, London Metropolitan University, 166-220 Holloway Road, London N7 8DB, UK; lusher{at}staff.londonmet.ac.uk

Abstract

Approximately a quarter of patients with inflammatory bowel disease (IBD) are diagnosed before 20 years of age, presenting with more extensive distribution and severity of disease than adult onset. The purpose of this review was to determine facilitators of, and barriers to, successful transition of patients with IBD from adolescent to adult services. A systematic review of IBD transition research was conducted in March 2014 searching PubMed, MEDLINE, PsycINFO, Web of Science and the Cochrane Database of Systematic Reviews databases. A hand search of reference lists and narrative reviews was carried out to maximise the potential for retrieving all relevant manuscripts. Primary studies written in English of full-length peer-reviewed journal articles that investigated transition of paediatric patients with IBD to adult services were included. Studies were excluded if the primary focus was not IBD. The search produced 283 potentially relevant studies. After removing duplicates and screening for suitability, six met our inclusion criteria. Barriers to transition included system inadequacies and a lack of resources, clinical time and training. Successful transition involved joint medical visits, structured transition services, improved communication between paediatric and adult services and improved education for patients and staff. If the transition process for adolescents suffering with IBD is to improve then it is vital that more research is conducted to better our understanding of ways in which we can ensure that defined protocols are in place for a smooth transition for every adolescent, leading to improved standards and minimal disruption to care.

  • CLINICAL DECISION MAKING
  • IBD
  • IBD CLINICAL
  • CROHN'S DISEASE
  • CROHN'S COLITIS
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Background

Inflammatory bowel disease (IBD) is a group of inflammatory conditions of the gastrointestinal tract. A long-term chronic disease, the primary subtypes of IBD are Crohn’s disease (CD) and ulcerative colitis (UC).1–5 IBD-unclassified is the term used when it is difficult to ascertain whether the presenting problem is CD or UC4 ,5 despite repeated reassessment. In the UK alone, there are over 240 000 IBD sufferers.6 Its cause remains unclear, with a complex interaction of genetics and environmental factors thought to play a part.1

IBD impacts on psychological well-being and quality of life,7–13 and can be diagnosed at any age, with onset usually between 15 and 35 years of age,14 and around a quarter of cases diagnosed under the age of 20 years.15 Presentation of IBD in young people differs from adult onset, with more extensive distribution and severity of disease in children.16–18 Patients diagnosed in adolescence are likely to experience 60 years of disease and frequent exposure to higher levels of diagnostic radiation, in addition to being at higher risk of associated malignancies.16 ,19 IBD symptoms profoundly affect children and adolescents20 ,21 with negative psychosocial consequences, including stress, social strain and altered self-image and self-esteem,22–24 which can impact on educational attainment, relationships and psychosexual development.25 Managing IBD in adolescents, therefore, requires a holistic approach to treatment that includes the support of a multidisciplinary team.26

A smooth transition from adolescent to adult service is vital to ensure that individual treatment is guided, and transition takes place causing minimal disruption to the adolescent's illness, in order to avoid recurrence.9 Transition is the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated healthcare systems.27 Transition of patients with IBD from paediatric to adult service varies, although it usually happens when the patient is between 16 and 19 years of age.6 Those managing transition must ensure readiness to change, and despite recent UK guidelines suggesting the need for a defined policy and protocol,6 in addition to UK clinical data on IBD transition16 ,28 and a need to understand barriers to successful transition,16 ,29 no systematic review has yet been conducted on IBD and transition in which these could be based. Taking into account the perspectives of patients, parents/carers, and health professionals (such as gastroenterologists) to inform appropriate service development and implementation is essential for developing suitable policies.30

The objective of this review was to determine a holistic understanding of facilitators and barriers to successful transition of patients with IBD from adolescent to adult services. The rationale for focusing particularly on IBD was due to the complexity of illness and varying nature of this chronic condition, which leads to variations in treatment, which can be different to other chronic illnesses.

The specific questions addressed in this review were:

  • What are the barriers to, and principles of, successful transition of patients with IBD from adolescent to adult services?

  • What methodological issues arise in studies of transition of patients with IBD from adolescent to adult services?

  • What future recommendations can be offered?

Method

Eligibility criteria

Studies were included in this review if they (1) investigated transition of paediatric patients with IBD to adult services, (2) were written in English, (3) full-length peer-reviewed journal articles and (4) primary studies (retrospective or prospective, quantitative and/or qualitative). Studies were excluded if the primary focus was not IBD.

Search strategy

To maximise potential for finding all relevant articles, subject-specific databases (PubMed, MEDLINE, PsycINFO, Web of Science and the Cochrane Database of Systematic Reviews) were systematically reviewed in March 2014. Each database was searched using the following terms, combined with Boolean operators: (1) inflammatory bowel disease (2) IBD (3) Crohn’s disease (4) colitis (5) #1 OR #2 OR #3 OR #4 (6) adolescen* (7) teen* (8) youth (9) young (10) #6 OR #7 OR #8 OR #9 (11) transition (12) transfer (13) #11 OR #12 (14) #5 AND #10 AND #13. Then a hand search through reference lists of all relevant articles and narrative commentaries on healthcare transition was performed. The searches were conducted in March 2014, and were not limited to a specific time frame.

Selection process

Titles and abstracts retrieved were screened for potential eligibility by TC. The full text of potential articles was then examined by TC and JL to determine eligibility for inclusion in the review using predesigned study eligibility verification forms. If disagreement occurred between the two authors regarding appraisal or inclusion of a study, a third independent person would have been brought in. Data were collated and identification numbers assigned to each study. Data collected from each study included author(s), country, year published, aim, sample size (including a breakdown in males and females, IBD subtype, patient or health professional, mean age at transition or diagnosis), study design and response rate, key findings and suggestions made by authors.

Quality audit

The quality of the selected studies was then assessed by TC and JL. Qualitative studies identified would be critically appraised using the CASP checklist31 for qualitative studies, and quantitative studies were assessed using the Quality Assessment Tool for Quantitative Studies.32 For the latter, quality was assessed using the six components of the assessment tool, (1) selection bias, (2) study-design confounders, (3) blinding, (4) data-collection method, (5) withdrawals and (6) dropouts. The studies were rated as strong, moderate or weak for each criterion according to the Quality Assessment Tool for Quantitative Studies Dictionary32 and then given a global rating that scored studies as strong, moderate or weak overall, depending on ratings for the individual components. Heterogeneity of the reports meant that no meaningful outcome would have come from pooling this data, so a meta-analysis was not feasible.

Results

As can be seen in figure 1, the search strategy produced 283 potentially relevant studies, 124 duplicates were removed from the list, leaving 159 titles and abstracts to be screened. Of these, 141 studies were excluded because titles or abstracts revealed topics outside of the focus of this review, and a further 12 studies were excluded as they were not primary studies. The remaining six full-text articles were retrieved16 ,28 ,29 ,33–35 and examined by TC and JL to determine eligibility for inclusion, and all of these fulfilled the inclusion criteria. A manual search of the references cited in the six studies16 ,28 ,29 ,33–35 and narrative commentaries on transition of care revealed no further studies for inclusion in this review.

As summarised in table 1, all studies explored transition of patients with IBD from adolescent to adult services. Bollegala et al29 examined resource usage in the year prior to transfer and the first year of transfer, Dabadie et al33 explored patients’ and parents’ perspectives and Goodhand et al16 investigated the effect of age on onset of IBD and the specific problems posed to make recommendations for transition clinics. The remaining studies28 ,34 ,35 investigated gastroenterologists’ views on perceived needs and barriers to successful transition. All studies were retrospective and quantitative in nature. Bollegala et al29 and Dabadie et al33 adopted a chart review method, as opposed to self-report survey, which was used by the remaining studies.

Table 1

Studies included

As shown in table 2, the majority of studies received a global rating of weak, with Goodhand et al16 receiving a moderate global rating. Four of the studies were rated as weak with regard to selection bias,28 ,29 ,34 ,35 as the response rate was low28 ,34 ,35 or not applicable.29 Dabadie et al33 were rated as moderate as the response level was higher, and Goodhand et al16 were rated as moderate as the individuals selected were representative of the target population. Studies using a retrospective survey design were rated as weak,28 ,33–35 and Bollegala et al29 and Goodhand et al16 received a moderate rating as they used a cohort design and case–control, respectively. Only Sebastian et al34 and Goodhand et al16 accounted for confounders and, therefore, received a rating of strong, and all remaining studies were rated as weak as they did not account for confounders such as diagnosis, age or comorbidities. For most studies, ratings for data collection method were weak for using self-report data without any reliability or validity. Those with strong ratings for data collection method used medical records.16 ,29

Table 2

Quality assessment ratings of included studies

Overall, the results illustrate mixed findings; however, all studies identify a need for either IBD transition-of-care policies, training for adult gastroenterologist or specific IBD transition programmes or clinics, as summarised in the box 1.

Box 1

Summary of findings

  • Six retrospective qualitative studies were included.

  • Five studies had a weak global quality assessment rating, and one study, a moderate rating.

  • Overall, the results illustrate mixed findings; however, all studies identify a need for either inflammatory bowel disease (IBD) transition-of-care policies, training for adult gastroenterologist or specific IBD transition programmes or clinics.

  • Barriers to successful transition include inadequacies in the preparation of adolescents for adult services defined by the adult gastroenterologists, lack of resources, clinical time and training needs as identified by both paediatric and adult providers.

Discussion

The aim of this review was to investigate barriers to, and principles of, successful transition of patients with IBD from adolescent to adult services. This review aimed to highlight the methodological issues arising in such studies and to provide recommendations for future research. Six studies met the review criteria, highlighting a shortage of research that has focused specifically on transition of patients with IBD from adolescent to adult services and also the difficulty in drawing any firm conclusions in which policies or clinical procedures to manage transition in IBD can be drawn. However, barriers to, and principles of, successful transition were identified in the limited amount of research that was available for review. Barriers included inadequacies in the preparation of adolescents for adult services defined by adult gastroenterologists and a lack of resources, clinical time and training needs identified by both paediatric and adult healthcare providers.

Supporting previous evidence that IBD is more severe in adolescence than adulthood,16 ,17 this review highlights the need for effective transition on this basis. The studies included in this review offer suggestions for achieving successful transition, such as adult gastroenterologists understanding the complexity of IBD diagnosed in childhood and paediatric gastroenterologists understanding the needs of adult providers.35 In addition, improved education about medical history and treatment to empower patients16 ,28 ,34 improved education for adult providers on adolescent issues16 ,28 and formal transition checklists.16

Improving communication between paediatric and adult healthcare providers,28 was an important factor that came out of this study. This review supports the creation of specific adolescent transition clinics16 ,29 as a response to fears that adult gastroenterologists would inherit patients with severe disease and multiple failed treatment regimens35 and patients with increased non-adherence and poor clinic attendance.29 ,35 Principles of successful transition were described as a structured transition service34 or the use of joint medical visits that were beneficial for both patients and parents in terms of transitioning information and building confidence in new gastroenterologists.33

Readiness to transfer was not identified here, despite research suggesting age and disease remission as possible factors of consideration,9 ,36 which has also been reported as an important component of successful transfer by both paediatric and adult professionals.28 Future considerations for studies carried out in transition clinics are that a full explanation of the processes used in the clinic is used to draw conclusions or to make comparisons.29

The current review is limited by the methodological quality of the studies included. Similar to previous reviews conducted on transition,37 ,38 the use of convenience and purposive sampling was adopted for all samples included here, making it difficult to draw conclusions that are representative of all patients who have IBD. The sample sizes of studies included in the review varied, with studies using patient populations having smaller sample sizes (n<100) than those using health professionals (n>300). However, regardless of variations in sample sizes, all studies were relatively small, and none of the studies calculated the necessary sample size needed to detect statistical significance. There was also a shortage of valid and reliable measures used by the studies in this review, particularly those adopting survey designs. This lack of standardisation makes comparison difficult. Methodological issues raised by this review are comparable with that of other reviews on transition.37 ,38 A strength of this review is that it draws on the perspective of health professionals when investigating the barriers to, and principles of, successful transition. Future studies are necessary for capturing the needs and attitudes of health professionals, both paediatric and adult, in IBD and other chronic conditions. Patient, family and both paediatric and adult healthcare provider perspectives are important for determining the most appropriate processes for transition, with the aim of developing mutually agreed transition programmes, to ensure a holistic approach to treatment.26 Additionally, research should consider carrying out randomised control studies on the benefits of transition clinics, variations in models of transition and approaches to IBD management in adulthood for those diagnosed in childhood, in which to base clinical practice. Clear patient outcomes, including rates of clinical and endoscopic remission, steroid use, surgery, hospitalisation, quality of life and cost-effectiveness, need to be measured for a comprehensive evaluation of transition clinics. Prospective studies should recruit large representative samples using standardised instruments. Finally, longitudinal studies would be useful to measure the long-term impact of transition.

In summary, the present review demonstrates a clear gap for further research on transition for IBD as current understanding is somewhat limited. Improved knowledge of the factors that contribute to or impede a smooth transition programme can lead to improved clinical practice where there are defined protocols that ensure a smooth transition is in place for every child, minimal disruption in care and a better standard of care for patients with IBD.

References

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Footnotes

  • Contributors TC and JL developed the idea and plans for this review. TC searched databases. JL and TC carried out quality audit. TC wrote first draft of manuscript. JL and TC subsequently revised and edited the submitted manuscript.

  • Competing interests None declared.

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

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