Toward a United Arab Emirates national inflammatory bowel disease transition care pathway: Findings from a healthcare professional survey and development of evidence-based tools.
The transition from pediatric to adult inflammatory bowel disease (IBD) care in the United Arab Emirates (UAE) is unstructured, creating a critical gap that risks treatment nonadherence and abrupt, unstructured transfers into adult services. We aimed to assess national practice patterns and barriers to inform development of a standardized UAE National IBD Transition Care Pathway. A 45-item electronic survey was distributed to UAE gastroenterologists and IBD nurse specialists via the Emirates Gastroenterology and Hepatology Society (EGHS) networks. We analyzed demographics, current practices, and perceived barriers, performing cross-tabulations between pediatric and adult healthcare professionals. Fifty-five healthcare professionals responded (46 adult gastroenterologists, 7 pediatric gastroenterologists, 2 IBD nurse specialists). Only 5.5% reported having a consistently used formal transition policy, while 58.2% had no policy. Joint pediatric-adult clinics were unavailable in 81.8% of practices. The highest-rated barriers included lack of a formal transition program (mean 3.65/5, 54.5% rating significant/very significant), patient inability to afford medications (3.40, 49.1%), and difficulty navigating public-private sectors (3.25, 47.3%). Adult healthcare professionals tended to rate barriers higher, with significant differences for poor communication between teams ( P = 0.020) and medication affordability ( P = 0.016). Healthcare professional priorities were development of a standardized national pathway (78.2%) and unified handover templates (49.1%). This first national assessment confirms critical infrastructure and communication gaps in UAE IBD transition care. In response, the EGHS Task Force has developed a comprehensive toolkit, including a standardized medical handover template, clinical transition framework, and the first Arabic-language Transition Readiness Assessment Questionnaire to standardize clinical practice.
- Research Article
8
- 10.4292/wjgpt.v8.i3.186
- Aug 6, 2017
- World Journal of Gastrointestinal Pharmacology and Therapeutics
AIMTo determine the tools needed and problems encountered during the transition of inflammatory bowel disease (IBD) patients from pediatric to adult gastroenterologists (GIs) in Québec, Canada.METHODSWe conducted a needs assessment survey of Quebec health care professionals (HCPs). The survey was handed out to 136 Québec HCPs at a local conference in 2013. Additionally, it was emailed to any other HCPs in Quebec involved in caring for IBD patients. The completed surveys were compiled to derive descriptive data. Further specific subgroup analysis was then conducted.RESULTSAmong the conference attendees and individuals emailed 77 (28.2%) completed the questionnaire. Respondents included adult GIs (61.3%), pediatric GIs (20.8%) and IBD nurses (18.3%). The majority of respondents believed that a standardized structure is important for a successful transition. Adult and pediatric GIs equally felt that patients were inadequately prepared for the transition (P = 0.6). There were significant differences between adult and pediatric GIs when it came to resource availability (55.6% vs 90.9%, P = 0.002) and perceived need of a formal transition clinic (21.7% vs 68.8%, P = 0.0006). Both transition program and medical summaries were identified as the most valuable tools to improve transition.CONCLUSIONAs described in previous studies, our survey reinforces the importance of a transition program, education for young adult IBD patients and the need to improve communication between adult and pediatric GIs.
- Abstract
4
- 10.1136/gut.2011.239301.455
- Apr 1, 2011
- Gut
IntroductionPreliminary data highlight the importance of appropriate transition for successful transfer of adolescents with IBD from paediatric to adult care. However, the ideal transition service has not been defined. The...
- Research Article
1
- 10.1093/ecco-jcc/jjad212.0223
- Jan 24, 2024
- Journal of Crohn's and Colitis
Background Given the increasing incidence, evolving treatment goals, and the need for tight and holistic monitoring, transformation in delivery of Inflammatory Bowel Disease (IBD) care is warranted. To innovate successfully, it is crucial to consider the values of healthcare professionals (HCP) and healthcare services, as well as the patient’s and informal caregiver’s perspective. This study aims to explore what patients with IBD and their informal caregivers value in Dutch IBD care. Methods In total, approximately 16 patients and 8 informal caregivers from an academic and a general hospital will be included. Respondents are recruited purposefully. Data collection will take place until data saturation is reached. The interviews are focused on real-life experiences and stories of respondents with regard to IBD. Interviews are conducted face-to-face or digitally, audio recorded and transcribed verbatim. Independent coding was executed by three researchers. A deductive thematic analysis approach was used, guided by the Picker Principles of Person Centred Care. Results Semi-structured narrative interviews were conducted with 8 IBD patients and 4 informal caregivers, i.e. family members, between June-September 2023. All Picker principles came across in the narratives. Respondents said that it is important to receive an effective treatment, minimizing intestinal symptoms and to function as good as possible with IBD. Involving patients in their treatment plan and paying attention to non-medical aspects, e.g. impact on work and social relationships, was relevant to respondents. Patients and caregivers valued easy and accessible communication with their HCP, the feeling to be heard, and immediate action of the HCP when required. A trustful relationship, fostered through e.g. regular face-to-face contact, was highlighted as important. Some respondents appreciated the use of eHealth tools, as these facilitate remote care if desired. Moreover, providing informal caregivers with information about the disease, treatment and impact on daily life was suggested as beneficial in supporting patients with IBD. Conclusion IBD patients and their informal caregivers value shared decision making, fast access to reliable healthcare advice, immediate action when needed, the feeling to be heard and a trustful relationship with their HCP when receiving IBD care in the Netherlands. These values and insight in the (shared)-values of all relevant stakeholders within the Dutch context will facilitate the development of valuable innovation and successful implementation. The perspectives of other stakeholders, such as HCPs, policymakers, health insurers, pharmaceutical companies, and eHealth providers, will be explored in an extensive qualitative study.
- Supplementary Content
1
- 10.3748/wjg.v31.i35.109882
- Sep 21, 2025
- World Journal of Gastroenterology
The second edition of the United Arab Emirates inflammatory bowel disease (IBD) consensus guidance provides updated recommendations for diagnosing, treating, and monitoring IBD. Significant therapeutic advances and evolving treatment paradigms since 2020 (including risk stratification and treat-to-target approaches) necessitated this comprehensive update to standardize care across the United Arab Emirates. Developed via Delphi consensus methodology, this guidance incorporates a systematic literature review and key international guidelines. It presents 188 summary statements covering the full spectrum of IBD care, including complex scenarios like perianal disease and pregnancy. Key updates feature guidance on newer pharmacologic therapies - interleukin-23, Janus kinase, and sphingosine-1-phosphate receptor inhibitors - with refined therapeutic positioning informed by recent head-to-head trials. The consensus emphasizes early, effective treatment to prevent irreversible bowel damage, optimization strategies like therapeutic drug monitoring, and achieving objective treat-to-target goals to improve long-term outcomes. Recognizing local healthcare system challenges, it offers practical recommendations on reducing variability and enhancing equitable access to IBD care. By integrating current clinical evidence with United Arab Emirates-specific considerations, the second edition United Arab Emirates IBD consensus guidance aims to standardize care across sectors, provide a benchmark for payers and policymakers, optimize treatment outcomes, and improve IBD outcomes, aligning national practice with international standards.
- Abstract
- 10.1136/flgastro-2022-bspghan.59
- Apr 1, 2022
- Frontline Gastroenterology
IBD 9 Research priorities in digital technology for adolescents and young persons with Inflammatory Bowel Disease: a James Lind Alliance Priority Setting Partnership
- Research Article
- 10.14309/00000434-201310001-01772
- Oct 1, 2013
- American Journal of Gastroenterology
Purpose: Adolescents with inflammatory bowel disease (IBD) have unique disease and psychosocial issues that require thoughtful multidisciplinary planning in care transition. Our aim was to examine the perceived requirements and barriers to a successful transition process across Canada. Methods: A 17-question web-link survey was distributed to all 393 members of the Canadian Association of Gastroenterology. Questions focusing on requirements and barriers to successful IBD care transition, as well as attitudes towards this process, were included. Results: Seventy-four responses (18.8% overall rate), which included 51 (68.9%) academic, 17 (23.0%) pediatric, and 52 (70.3%) adult gastroenterologists (GIs). Fifteen percent of adult academic GIs, compared to 34.0% of pediatric GIs, completed this study. A structured transition process was perceived as necessary and beneficial for the majority of adolescents with IBD in 71.8% and 80.3% of total respondents, respectively. Identified barriers to this process include lack of funding and resources, geographical isolation, insufficient healthcare professionals to participate, and poor transfer documentation. Only 46.5% of respondents' institutions had a structured transition process, and 31.6% had a dedicated transition clinic. Determinants for referring patients to transition clinics include patients' age, maturity, disease activity, and complexity. The most important components deemed to result in a successful transition process included: comprehensive transfer notes, complete and timely assessment by GIs transferring and receiving care. A successful transition was thought to occur when patients were fully informed of their disease and management plans. Pediatric and adult GIs hold different views toward the adolescent IBD transition process. When compared to adult GIs, significantly more pediatric GIs perceived a structured transition process as necessary (p = 0.001), and would benefit more adolescents with IBD (p = 0.002). More pediatric GIs interacted with adolescents with IBD (67.3% vs. 100%, p = 0.0072), participated (34.7% vs. 94.1%, p < 0.0001) and had a formalized transition process (34.7% vs. 82.4%, p = 0.0036). Conclusion: Pediatric GIs play a larger role than adult GIs in the structured transition process for adolescent IBD patients in Canada. Perceived barriers limiting this practice in Canada include prevailing adult GI attitudes that transition care is not necessary, and the lack of dedicated resources. Future research must focus on understanding the potential benefit and the process to achieve successful IBD care transition.
- Research Article
- 10.1093/ecco-jcc/jjae190.1573
- Jan 22, 2025
- Journal of Crohn's and Colitis
Background In a previous qualitative study, interviews were conducted with people with inflammatory bowel disease (IBD) using NHS services and healthcare professionals (HCPs1). Themes arising from the findings of this research included “Human matters” and “Accessibility matters”. Participants described generally accepting eHealth solutions, but some concerns were expressed about accessibility and challenges to effective eHealth. This study aimed to gain a broader understanding of the themes identified. Methods A 32-item online questionnaire was developed with items relating to demographic characteristics, level of agreement with statements based on the themes identified in the previous study, experiences of using eHealth, and opinions on the future use of eHealth in IBD care. People with IBD and their HCPS were invited to participate via professional networks, patient groups, and charities. The online survey was available between June and October 2024. Descriptive statistics were used to summarise the data. Results Two hundred and thirty respondents completed the survey; 103 (45%) reported being healthcare professionals (HCPs), and 127 (55%) participants had IBD. HCP respondents reported to be medical doctors (n=17, 17%), nurses (n=73, 71%), dietitians (n=5, 5%), surgeons (n=2, 2%), pharmacists (n=4, 4%), an Advanced Clinical Practitioner (n=1, 1%), and psychologist (n=1, 1%). Participants with IBD reported a diagnosis of Ulcerative Colitis (n=52, 41%), Crohn’s Disease (n=57, 45%) or IBD of unknown origin (n=18, 14%). Only 5 (4%) participants with IBD and 5 (5%) HCPs reported not using eHealth to support condition management. Most HCPs (n=97, 86%) and participants with IBD (n=116, 91%) reported valuing in-person care, with 94 (91%) HCPs emphasising its relevance for eHealth effectiveness. 45 (32%) HCPs and 33 (36%) participants with IBD reported technology in the NHS supports IBD care effectively. However, some participants (n=75, 37%) responded "yes" or "not sure" when asked if there were negative impacts of eHealth on IBD management. Conclusion Preliminary results of this study indicate that people with IBD and HCPs value eHealth and face-to-face contact. Some participants expressed that the use of eHealth could negatively impact their experience during healthcare delivery. Further data analysis, including free text responses in the survey, aims to explore further participants’ views on e-health to manage IBD.
- Abstract
- 10.14309/01.ajg.0000798736.44273.fa
- Dec 1, 2021
- American Journal of Gastroenterology
Crohn's disease (CD) and ulcerative colitis (UC) are inflammatory bowel diseases (IBD) affecting 6.8 million persons globally. Treatment of IBD focuses largely on immune suppression or modulation using corticosteroids, aminosalicylates, thiopurines, or biologic agents. These agents are effective but most of them pose a risk of infections, cancers, and osteoporosis. Many of these complications can be prevented by implementing vaccination, cancer screening, and bone health programs. Despite the progress in IBD care, recent data suggest that many IBD patients do not get preventative services. Previous studies have examined rates of vaccinations and other health maintenance metrics in North America and Europe where IBD patients are mainly of European and African descent. In comparison, Middle Eastern and Asian descent persons comprise the majority of the IBD population in Abu Dhabi, the capital city of United Arab Emirates (UAE), a major country in the Gulf region of the Middle East. Little is known to date about the state of IBD preventative care in this region. We sought to assess the proportion of patients with IBD that underwent recommended vaccinations, cancer screening (surveillance colonoscopy, PAP smear, annual skin examination), and bone health evaluation at Sheikh Shakhbout Medical City (SSMC), the largest tertiary care hospital in Abu Dhabi. This study was a retrospective case series of adult IBD patients (>18 years) seen in the outpatient setting at SSMC from 2019 to 2020. Patients were identified based on ICD-10 codes for IBD [K50.90, K50.00, K51.90, and K50.80] as well as administrative/pharmacy records of the IBD agents (e.g. infliximab). Proportions were assessed using simple summary statistics and one sample proportion 95% confidence intervals were calculated. A total of 55 IBD patients were identified in our study with the majority being males (76.3%). The mean age was 31.6 years. Sixty-nine percent had Crohn's. Most of the patients were on infliximab (58.1%), followed by vedolizumab, ustekinumab, and adalimumab. The proportion of patients who received vaccinations was as follows; HAV (67%, 95% CI 28-100%), HBV (50%, 95% CI 28-72%), pneumococcal 23 (20%, 95% CI 9.4-31%), pneumococcal 13 (18.2%, 95% CI 8-28%) and influenza vaccine (16.4%, 95% CI 7-26%). Moreover, the study showed that the proportion of IBD patients who underwent recommended colonoscopy surveillance was 91% (95% CI 79-100%) and the proportion of women IBD patients who had recommended PAP smear was 30%, (95% CI 2-58%). Regarding bone health, the proportion who underwent DXA bone scans was 36%, (95% CI 24-49%) However, the compliance rate of the Tdap, HPV and Zoster vaccinations, and annual skin examination were poor warranting further quality improvement studies. This study revealed that the state of health maintenance among IBD patients seen at our facility before 2021 was largely dismal. Efforts are being taken to improve the proportion of patients who receive recommended vaccinations including annual influenza, pneumococcal 13 and 23, HPV, Zoster, and COVID-19 vaccines. Furthermore, there is a focus on bone health and skin cancer examinations with plans to calculate, report, and publish health maintenance data annually.
- Research Article
1
- 10.4103/1319-3767.199115
- Jan 1, 2017
- Saudi Journal of Gastroenterology : Official Journal of the Saudi Gastroenterology Association
Background/Aim:Although international guidelines in inflammatory bowel disease (IBD) management are currently available, variations in IBD care still exist. The aim of this study was to determine the extent of the variation in IBD care among Saudi pediatric gastroenterologists.Materials and Methods:A cross-sectional survey was conducted among all pediatric gastroenterologists who were members of the Saudi Society of Pediatric Gastroenterology, Hepatology, and Nutrition (SASPGHAN) from August 2015 to December 2015. The questionnaire included items on demographic characteristics and utilization of different diagnostic and therapeutic interventions in IBD care.Results:Of the 45 registered pediatric gastroenterologists surveyed, 37 (82%) returned the survey from 20 centers across the country; 75.7% were practicing in tertiary care centers. There was a considerable variation in the use of different diagnostic tests during the initial evaluation of the disease. Utilization of calprotectin assays, magnetic resonance imaging enterography, and bone densitometry seemed to vary the most between physicians practicing at tertiary and secondary care centers. There were statistically significant differences in the prescription of biological therapy between the two groups.Conclusions:We found a considerable variation in the use of different diagnostic and therapeutic interventions in the management of pediatric IBD patients. Such variations could lead to unintended differences in patient outcomes. Implementation of the available evidence-based guidelines may limit such variations and ultimately could improve the quality of IBD care provided.
- Research Article
- 10.1093/ecco-jcc/jjaf231.1578
- Jan 1, 2026
- Journal of Crohn’s and Colitis
Background The higher education sector plays an integral role in ensuring that healthcare professionals possess the knowledge, skills, and competencies needed to deliver high-quality, evidence-based care. However, there is a lack of academically accredited higher-education programmes specifically designed to educate healthcare professionals in the principles of inflammatory bowel disease (IBD) care. The aim of this initiative was to design, deliver, and evaluate an accredited educational programme in IBD. Methods The programme was developed in collaboration with IBD subject-matter experts through stakeholder consultations to obtain strategic input on structure and content. A Certificate in Inflammatory Bowel Disease Care was validated by Munster Technological University in 2021, and the first cohort commenced in January 2022. This fully online, 10-credit (ECTS - European Credit Transfer and Accumulation System) postgraduate programme runs over 12 weeks each academic year. Student profiles are collected at programme commencement, and a final evaluation is completed in week 12. Results To date, 79 healthcare professionals have graduated from the programme. Content analysis of evaluation data indicates that graduates found the programme practice-focused and reported improved understanding of evidence-based IBD care. Modifications are made for each cohort based on student feedback and consultation with subject-matter experts to ensure the programme remains current and relevant. Conclusion Given the global need for more healthcare professionals with specialised training in IBD, this initiative offers valuable insights into the co-design, delivery, and evaluation of academically accredited educational programmes in this field. Conflict of interest: Farrell, Dawn: No conflict of interest Sugrue, Kathleen: No conflict of interest Keogh, Aine M.: No conflict of interest
- Research Article
1
- 10.1093/ecco-jcc/jjab076.256
- May 27, 2021
- Journal of Crohn's and Colitis
Background The IBD Benchmarking Tool, comprising an online Service Self-Assessment and Patient Survey, has provided a unique and comprehensive picture of Inflammatory Bowel Disease (IBD) care across the UK. The aim was to evaluate current local service performance to facilitate future quality improvement. Methods The IBD Patient Survey (PS) ran from July to November 2019 and the Service Self-Assessment (SSA) from October 2019 to January 2020. Detailed views were collected of the quality of IBD care from patient and clinician perspectives, measured against the UK IBD Standards 2019.1 The IBD UK National Report will be published in April 2021. Results 10,222 patients completed the PS. 89% (9,100/10,222) had found it hard to cope with having Crohn’s or Colitis over the previous year. 72% (6,954/9,640) rated the quality of their care as excellent, very good or good and 28% (2,686/9,640) rated the quality of their care as fair or poor. The top three factors that predicted how highly people with IBD rated their quality of care were: feeling supported by a team of specialists; having regular reviews; and discussing wider life goals and priorities, as part of planning their care. 26% (535/2,089) had waited more than a year for their diagnosis. 41% (849/2,087) had visited Accident & Emergency at least once before being diagnosed. 32% (656/2,057) were not offered any information about their condition when diagnosed. 91% (8,284/9,099) did not have a personalised care plan. Over the previous 12 months, 70% (6,732/9,574) had one or more flares and 72% (1,622/2,250) of inpatient admissions were unplanned. A key finding from the SSA (166 centres: 134 adult, 32 paediatric) was that no adult IBD services reported meeting the IBD Standards’ recommendation for whole time equivalent (WTE) staffing across the IBD team. Where services reported meeting the WTE for IBD nurse specialists, patients were more likely to rate the quality of their care highly and to have regular clinical review of their Crohn’s or Colitis. Conclusion The results highlight four key areas for change: improvements in diagnosis and information provision; personalised care and support for self-management; faster access to specialist advice and treatment; and effective multidisciplinary team (MDT) working. The Report sets out recommendations for action in each of these areas. To our knowledge, this is the first time that healthcare professionals and patients have assessed care against a common set of standards. The IBD Benchmarking Tool provides location-matched service performance and patient experience as an exemplar for others to follow. Reference
- Research Article
- 10.1002/jcc5.70013
- Feb 14, 2026
- JCC Plus
Healthcare systems worldwide are undergoing profound transformation due to demographic shifts, rising costs and technological innovation. Inflammatory bowel disease (IBD) care, encompassing Crohn's disease and ulcerative colitis, faces similar challenges related to affordability and sustainability, both in high‐income countries (HICs) and low‐ and middle‐income countries (LMICs). To understand and redesign healthcare effectively, three key dimensions must be considered: the narrative (the guiding values and purpose of care), the architecture (how the system is structured and financed) and the players (the people and organisations shaping it). Inflammatory bowel disease (IBD) care is embedded within this same system and faces similar challenges. This article explores how value‐based healthcare (VBHC), defined as achieving the best possible outcomes that matter to patients relative to the required cost, can guide the transition to a more future‐proof model of IBD care. As value is defined as outcome per cost to achieve this outcome, VBHC emphasises transparency in costs, accurate and holistic measurement of outcomes and continuous process improvement to enhance both quality and efficiency of care. Although the concept originated in high‐income countries, the principles of VBHC are equally relevant for low‐ and middle‐income countries (LMICs), where the optimisation of limited resources is essential. In IBD care, this approach involves three main steps. First, understanding the full cost of IBD, including direct and indirect costs. Secondly, measuring outcomes that are meaningful to patients and third, continuously improving quality of care through collaboration, digital innovation and better use of data. Innovative strategies, including remote monitoring, the use of digital tools and expanded roles for IBD nurses, can enhance value in our IBD care. In LMICs, these principles must be adapted to local realities, and within this context, reorganising IBD care aims towards more sustainability and equity. The central insight here is that value does not equate to intense use of new technologies and new treatments but to a system delivering affordable generics, resource‐sensitive care pathways and transparent outcome tracking, which may yield higher societal value than one offering expensive biologics to a privileged few. In summary, we present a framework for redesigning IBD care for the future. Whether in high‐income or resource‐limited settings, integrating VBHC means aligning costs and outcomes, leading to more affordability, equity and patient empowerment. Through this transformation and with efforts from all stakeholders involved, IBD care can evolve into a model of patient‐centred and valuable healthcare.
- Research Article
13
- 10.1111/ped.14376
- Jan 1, 2021
- Pediatrics International
In 2019 we reported the results of a Japanese national survey designed to explore the views of adult gastroenterologists regarding transitional care for patients with childhood-onset inflammatory bowel disease (IBD). For the present study, we conducted a similar survey of pediatric gastroenterologists to compare the views of the two sets of specialists. The survey conducted in 2019 involved 48 representative members of the Japanese Society for Pediatric Gastroenterology, Hepatology and Nutrition. They were contacted by conventional mail and their answers were not anonymized. Respondents who had already referred patients with IBD to adult gastroenterologists were asked in a questionnaire to rank the importance of specific statements on a Likert scale. The response rate was 79% and 29 (60%) of the respondents had experienced transitional care for patients with IBD. Transfer to adult care was considered by 90% of the respondents to be the ideal form of medical care for adolescents/young adults with IBD. However, 59% of the respondents had experienced some degree of difficulty when making referrals for such care. The majority of pediatric gastroenterologists considered that the ideal age for transfer was 18-22years. Among the respondents, physicians at municipal hospitals considered that the presence of diseases other than IBD and a shortage of manpower were significantly more important issues than other practice settings. The present survey revealed that the general views regarding transitional care for IBD between pediatric and adult gastroenterologists were similar, except for the appropriate time for transfer. The results underline the importance of preparing a transition program appropriate to practice settings.
- Discussion
19
- 10.1097/00005176-200304000-00019
- Apr 1, 2003
- Journal of pediatric gastroenterology and nutrition
A 1996 report (1) by the Royal College of Physicians (RCP) focused attention on the previously neglected area of adolescent medicine in the United Kingdom (UK). It also highlighted the need for a formal process of transferring the care of young adult patients with chronic diseases from pediatric services to adult physicians. Since then Aynsley-Green et al. (2) have stressed the needs of adolescent patients and we are currently awaiting the publication of a report from an intercollegiate working party hosted by the Royal College of Paediatrics and Child Health on Health Services for Adolescents. In a review article, Viner (3) has identified the issues and made sensible recommendations for best practice in the transfer of care for young adults with chronic disease. This includes the establishment of programs with specific `transitional' or `young adult' clinics. He points out that the supportive literature and previously published guidelines are largely anecdotal with most of the work coming from America and Australia where private medicine is the norm and sub-specialization is much more widespread than in the UK. Earlier this year, Baldassano et al. (4) published the recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) with respect to the transition of care for the pediatric patient with inflammatory bowel disease (IBD) from pediatric gastroenterologist to internist-gastroenterologist. This paper has much in common with both the RCP Report (1) and Viner's suggestions (3). It describes the generic needs of the adolescent patient with a chronic disease as well as the more subtle psycho-social forces at work in a doctor-patient relationship that has been built up over many years. The authors emphasize the need for pediatric gastroenterologists to care for children with IBD but insist that adult gastroenterologists have different skills that are necessary to provide optimum care to older patients. They highlight problems with pregnancy, higher education, and obtaining insurance (which is less applicable in the UK). The paper also makes the following specific points (4): Adolescent patients should start to be seen without their parents before transfer in an effort to build a therapeutic relationship that promotes independence and resembles the relationship the patients will have in the future with their physician. It is essential to introduce the family to the concept of transition early. The benefits must be emphasized, including the promotion of independent behavior and the planning of long-range goals in a more appropriate environment for treating young adults. The patient and family should be made aware that an adult needs a physician with different experience and skills to deal with specific problems that are not usually encountered by the pediatrician. At the same time, the physician must appreciate the subtle differences between patients who have had a chronic disease that presented in childhood and those who present in later life. The timing of transition requires flexibility, varies between individuals, and will depend on life circumstances. THE UNITED KINGDOM The National Health Service (NHS) is free at the point of access and the majority of children with chronic gastroenterological disease in the UK are looked after exclusively in the public sector. The NHS also differs significantly from most other health services in the developed world in that the hospital specialist is assisted by a primary care doctor or general practitioner who is the first point of contact for a child with an unscheduled or emergency problem. This doctor does not change and will continue to coordinate the routine primary care and prescribe medications for the young adult. This adds stability despite the transition between specialists at the hospital level. The financial and professional structure of the NHS makes it possible to run transitional adolescent clinics that are attended jointly by the pediatric gastroenterologist and the adult gastroenterologist who will eventually take over the care. These clinics can take place in the same hospital that the patient attended as a child and can use the same records and diagnostic facilities. This ensures a smooth transfer between different arms of the same service. In April 2001, in an effort to survey the provision of transition clinics, we identified and contacted consultant pediatric gastroenterologists and hepatologists working in the UK and Ireland. We asked them to complete and return a simple questionnaire regarding the details of transition clinics held in their units. We received replies from 28 of 31 units and found that only 11 of those units were running transition clinics; 9 involved a joint consultation with an adult gastroenterologist or hepatologist and 2 involved a consultation with an adult surgeon. The frequency of the clinics varied between 2 and 12 a year. All the clinics were within normal working hours although one clinic ran into the evening and one center arranged clinics during school holidays. SUGGESTED GUIDELINES FOR TRANSITION CLINICS In addition to principles discussed earlier, transition clinics should be based around the following concepts that we have developed from Viner (3). The clinic should be held at a time that is convenient to the young person to encourage good attendance. It should be free from both young children and older adult patients who may exhibit complications that are best avoided at this stage. Both the pediatrician and physician should be present as well as other health care professionals such as specialist nurses and dietitians. This clinic offers an opportunity to review the patient's management and the first visit should be preceded by a summary of the clinical details, a copy of which should be provided for the patient and family. It should also be used to promote general health education, which is of particular significance to the young adult with a chronic problem such as IBD. Summary The British Society for Paediatric Gastroenetrology, Hepatology and Nutrition (BSPGHAN) does not have published recommendations on the transfer of care between pediatric and adult services. In this letter we have augmented the excellent recommendations from NASPGHAN with further suggestions for the development of transition clinics for adolescents with chronic gastrointestinal disease. We feel that this concept should be given a priority by units across the UK. Our data suggest a paucity of such provision at present. Ieuan H. Davies, (SpR) Huw R. Jenkins, (Consultant Paediatric Gastroenterologist)
- Research Article
4
- 10.1111/jgh.13368
- Jun 1, 2016
- Journal of Gastroenterology and Hepatology
New models of care in IBD in changing times.