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Perspectives of paediatric and adult gastroenterologists on transfer and transition care of adolescents with inflammatory bowel disease E. K. Wright,1 J. Williams,1,2 J. M. Andrews,3 A. S. Day,4 R. B. Gearry,4 P. Bampton,5 D. Moore,6 D. Lemberg,7 R. Ravikumaran,8 J. Wilson,9 P. Lewindon,10 G. Radford-Smith,11 J. Rosenbaum,12 A. Catto-Smith,12 P. V. Desmond,1 W. R. Connell,1 D. Cameron,12 G. Alex,12 S. J. Bell1 and P. De Cruz1 1 Department of Gastroenterology, St Vincent’s Hospital and University of Melbourne, 2Swinburne University of Technology, 12Royal Children’s Hospital, Melbourne, Victoria, 3Department of Gastroenterology and Hepatology, Royal Adelaide Hospital and University of Adelaide, 5Department of Gastroenterology and Hepatology, Flinders Medical Centre and Flinders University, 6Women’s and Children’s Hospital, Adelaide, South Australia, 7 Sydney Children’s Hospital, Sydney, New South Wales, 8University of Western Australia, Perth, Western Australia, 9Menzies Research Institute Tasmania and University of Tasmania, Hobart, Tasmania, 10Mater Health Services, University of Queensland, 11Queensland Institute of Medical Research, Inflammatory Bowel Diseases and Royal Brisbane and Women’s Hospital, Brisbane, Queensland, Australia, and 4Department of Medicine,
University of Otago, Christchurch, New Zealand
Key words transfer, transition, adolescent, inflammatory bowel disease. Correspondence Peter De Cruz, Department of Gastroenterology, St Vincent’s Hospital, 41 Victoria Parade, Fitzroy, Melbourne, Vic. 3065, Australia. Email: [email protected] Received 5 September 2013; accepted 8 January 2014. doi:10.1111/imj.12402
Abstract Background: Programmes specific to inflammatory bowel disease (IBD) that facilitate transition from paediatric to adult care are currently lacking. Aim: We aimed to explore the perceived needs of adolescents with IBD among paediatric and adult gastroenterologists and to identify barriers to effective transition. Methods: A web-based survey of paediatric and adult gastroenterologists in Australia and New Zealand employed both ranked items (Likert scale; from 1 not important to 5 very important) and forced choice items regarding the importance of various factors in faciitating effective transition of adolescents from paediatric to adult care. Results: Response rate among 178 clinicians was 41%. Only 23% of respondents felt that adolescents with IBD were adequately prepared for transition to adult care. Psychological maturity (Mean = 4.3, standard deviation (SD) = 0.70) and readiness as assessed by adult caregiver (Mean = 4, SD = 0.72) were prioritised as the most important factors in determining timing of transfer. Self-efficacy and readiness as assessed by adult caregiver were considered the two most important factors to determine timing of transition by both groups of gastroenterologists. Poor medical and surgical handover (Mean = 4.10, SD = 0.8) and patients’ lack of responsibility for their own care (Mean= 4.10, SD = 0.82) were perceived as major barriers to successful transition by both paediatric and adult gastroenterologists. Conclusions: Deficiencies exist in current transition care of adolescents with IBD in Australia and New Zealand. Standardising transition care practices with strategies aimed at optimising communication, patient education, self-efficacy and adherence may improve outcomes.
Introduction Inflammatory bowel disease (IBD) is a chronic, disabling condition that primarily affects young adults.1 The incidence of IBD in Australia and New Zealand is among the highest in the world with crude annual incidence rates of 29.3 per 100 000.2,3 The incidence of IBD in children is increasing with more than 25% of cases of IBD now being
Funding: None. Conflict of interest: None.
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diagnosed in patients under the age of 16.4 Childhoodonset IBD is characterised by extensive intestinal involvement and rapid disease progression.4,5 As adolescents move towards adulthood, there needs to be a shift in responsibility of care from their guardians to themselves, as well as the transfer of care from paediatric to adult gastroenterologists. The relapsing and remitting nature of IBD and its impact on the physical, developmental and psychological states of adolescent patients make successful transition an important aspect of patient care.6 © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Transition in inflammatory bowel disease care
Transition in a healthcare context is defined as ‘the purposeful, planned movement of adolescents and young adults which chronic physical and medical conditions from child-centered to adult-oriented healthcare systems7’. Adolescence occurs between the onset of puberty and adulthood and is a time of significant emotional and cognitive development.8 The basic principles guiding transfer and transition of adolescents with chronic diseases from paediatric to adult care have been established.9 Preliminary evidence from the United Kingdom suggests that adolescents with IBD attending specialised transition clinics have improved outpatient clinic attendance, reduction in hospital admission rates and reduced need for surgery when compared with patients who do not attend a specialised transition service.10 As yet a structured transition programme for adolescents with IBD that has been mutually agreed on by paediatric and adult gastroenterologists does not exist in Australia or New Zealand and approaches are individual or centre specific. It has recently been suggested that there may be a disconnect between the opinions of paediatric and adult gastroenterologists regarding the ideal management of adolescents with IBD at the time of transition.11 The aim of this study was to determine the opinions of gastroenterologists regarding the adequacy of current transition programmes for adolescents with IBD in Australia and New Zealand and to identify barriers to effective transition. Differences in the perceived transition requirements for patients with IBD between adult and paediatric gastroenterologists were also explored. The study was undertaken on the premise that only once current inadequacies are identified can changes be implemented to clinical practice in the hope of improving disease outcomes.
Methods A web-based survey was sent to paediatric and adult gastroenterologists under the auspices of the Australian Inflammatory Bowel Disease Association (AIBDA), Inflammatory Bowel Diseases New Zealand (IBD-NZ) and the Australian Society of Paediatric Gastroenterology, Hepatology and Nutrition (AusPGHAN). The 25-item survey collected demographic details from respondents as well as information regarding the location and type of their practice. Questions focused around five key areas: (i) assessment of current preparedness of adolescents at the time of transfer and adequacy of current transition care; (ii) patient factors important in assessing readiness for transition; (iii) patient and disease factors important in determining the timing of transition; (iv) organisational, clinician and patient-related barriers to © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
successful transition; and (v) optimal communication methods and models for structured transition. Most items were rated on a 5-point Likert scale from 1 = not important to 5 = very important. For some questions, a forced choice response format was used, and respondents were asked to choose between several options. Results are expressed as mean Likert Scale Score (Mean) and standard deviation (SD). Differences between paediatric and adult gastroenterologists on continuous variables were explored using Mann–Whitney U-test non-parametric analyses, owing to significantly non-normally distributed data and unequal groups. Differences between paediatric and adult gastroenterologists on categorical variables were explored using Chi-squared analyses. The threshold for statistical significance was set at P < 0.05.
Results Participants The survey was sent to 178 clinicians, of whom 73 (41%) responded. Of the 73 respondents, 49 (66%) were adult gastroenterologists and 25 (34%) were paediatric gastroenterologists. Paediatric gastroenterologists had a slightly higher response rate than adult gastroenterologists (45% vs 39%; P = NS). All respondents were in active clinical practice. Ten per cent of survey respondents practised in New Zealand and the remainder were from Australia. Respondents came from all states and territories in Australia except for the Northern Territory, with Victoria and New South Wales being most heavily represented. All paediatric gastroenterologists and 92% of adult gastroenterologists listed metropolitan centres as the location of their primary practice. All clinicians worked at least part time in the public sector with 56% of paediatric gastroenterologists and 31% of adult gastroenterologists undertaking no private sector work. Twenty-four of 25 (94%) paediatric gastroenterologists and 35 of 49 (71%) adult gastroenterologists identified themselves as providers of transition care for IBD patients. All paediatric gastroenterologists delivered care to at least five patients with IBD aged 15–18, with 8/24 (32%) of respondents caring for more than 40 IBD patients in this age group. Twenty-four of 49 (50%) adult gastroenterologists delivered care to less than five patients with IBD aged 15–18 whereas 21/49 (44%) cared for between 5 and 20 patients in this age group.
Adolescent preparedness for transition and adequacy of current transition care Twenty-three per cent of respondents indicated that they felt that patients were adequately prepared for transition 491
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Table 1 Patient factors rated as most important for successful transition by paediatric and adult gastroenterologists
Readiness as assessed by caregiver Age Age 18 Completion of secondary schooling Disease in remission High score obtained in a self-efficacy questionnaire Total
Paediatric gastroenterologist n = 25
Adult gastroenterologist n = 48†
4 (16%) 2 (8%) 0 10 (40%) 0 9 (36%) 25 (100%)
18 (37.5%) 4 (8.3%) 1 (2.1%) 4 (8.3%) 4 (8.3%) 17 (35.4%) 48 (100%)
†One adult gastroenterologist did not answer this question.
from paediatric to adult care. Forty-nine per cent of respondents felt that patients were not adequately prepared for transition from paediatric to adult care. The remaining respondents were uncertain about the adequacy of preparation of adolescent patients for transition.
Readiness for transition Among both paediatric and adult gastroenterologists, the factors considered to be most important in determining readiness for transition were psychological maturity (Mean = 4.3, SD = 0.70) and readiness as assessed by adult caregiver (Mean = 4, SD = 0.72). The factors perceived to be relatively less important were chronological age (Mean = 3.5, SD = 0.89) and psychosexual maturity. There were significant differences between paediatric and adult gastroenterologists’ perceptions regarding the importance of individual factors used to determine readiness for transition (Table 1). Paediatric gastroenterologists rated achievement of educational milestones (U = 499.50, P < 0.001, Z = −3.75), psychological maturity (U = 410, P = 0.03, Z = −2.16), psychosexual maturity (U = 401.50, P = 0.001, Z = −2.44) and growth/nutritional status (U = 305, P < 0.001, Z = −3.72) as being more relevant in assessing readiness of patients for transition than did adult gastroenterologists (Fig. 1).
Disease factors for transition Disease factors were overall considered to be less important compared with other factors when planning transition from paediatric to adult care. Nonetheless of the disease factors considered, disease remission (Mean = 3.64, SD = 1) and need for pelvic surgery (Mean= 3.32, SD = 1.11) were perceived to be the most important.
of transfer χ2 (5) = 13.73, P = 0.01 (Table 1). Adult gastroenterologists tended to prioritise readiness as assessed by caregiver more frequently compared with paediatric gastroenterologists. In contrast to adult gastroenterologists, paediatric gastroenterologists tended to prioritise completion of secondary schooling as the most important patient factor to consider when determining timing for transition. Despite these overall differences in perception between the two groups, self-efficacy and readiness as assessed by adult caregiver were perceived to be the two most important factors in determining timing of transition among both paediatric and adult gastroenterologists.
Optimal age at which adolescents should be transferred The age range of 17–19 years was most frequently considered to be the most appropriate age for transition by both paediatric and adult gastroenterologists (63.5%).
Barriers to successful transition Both paediatric and adult gastroenterologists strongly agreed that patients’ lack of responsibility for their own care (Mean= 4.10, SD = 0.82) and poor medical and surgical handover (Mean = 4.10, SD = 0.8) represented barriers to successful transition. In particular, poor medical/surgical handover between paediatric and adult physicians/surgeons was perceived to be more of an issue by adult gastroenterologists than their paediatric colleagues (U = 449, P = 0.05, Z = −1.96). Paediatric gastroenterologists were more likely than adult gastroenterologists to agree that reduced frequency of adult appointments represented a barrier to successful transition (U = 419, P = 0.02, Z = −2.21) (Fig. 2).
Timing of transfer
Communication methods
Adult and paediatric gastroenterologists differed significantly in their opinions regarding determinants of timing
There was no clear agreement concerning which method of communication should be used as the primary tool at
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© 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Transition in inflammatory bowel disease care
Figure 1 Differences between paediatric and adult gastroenterologists’ perceptions of the importance of educational milestones (A), psychological maturity (B) and growth/nutrition status (C) in facilitating transition from paediatric to adult care.
the time of transfer. A joint outpatient clinic (attended by patient, caregiver, paediatric and adult gastroenterologist) was favoured by 30% of respondents. A transfer meeting with patient, caregiver, nurse coordinator, paediatric and adult gastroenterologist was endorsed by 27% of respondents and a multidisciplinary meeting (MDM) with paediatric and adult gastroenterologist and nurse coordinator (without patient and caregiver) was supported by 23% of respondents. Paediatric gastroenterologists (36%), more so than adult gastroenterologists (22%), identified a transfer meeting, with the patient present, as the most preferred communication method at the time of transfer. Thirtyone per cent of adult gastroenterologists, compared with only 8% of their paediatric colleagues preferred a MDM, without the patient and caregiver present, as an optimal method for communication. However, there was no sig© 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
nificant difference overall in the responses of paediatric and adult gastroenterologists regarding the optimal methods for communication.
Models for structured transition An optimal model for transition was not clearly agreed on by all respondents. However, a model that varied depending on the perceived need of the patient and the complexity and severity of disease was the most favoured model (26%). The second most frequently endorsed model was one which involved an overlap of appointments, where the patient attended alternating paediatric and adult consultations for 6–12 months over the transition period (18%). Similarly, a single clinic appointment attended by patient, caregiver, nurse coordinator, 493
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Figure 2 Differences between paediatric and adult gastroenterologists’ perception of poor medical/surgical handover (A) and reduced frequency of adult appointments (B) as barriers to transition from paediatric to adult care.
paediatric and adult gastroenterologist was also felt to be an appropriate model for structured transition (18%).
Discussion This is the first Australian and New Zealand study on transition care in IBD and provides an insight into the current perspectives of paediatric and adult gastroenterologists. Less than a quarter of respondents to this survey felt that adolescents were adequately prepared for the transition from paediatric to adult care suggesting that there may be deficiencies in current transition and transfer practices of patients with IBD from paediatric to adult care in Australia and New Zealand. This study accordingly sought to explore factors influencing current transition practices in relation to assessment of patient readiness for transition, timing of transition, barriers to successful transition, communication methods and models for structured transition care. In Australia and New Zealand, timing of transfer of adolescents with chronic medical conditions from paediatric to adult care is usually determined by the patient’s chronological age. The present study suggests that a more flexible approach is required. Rather than chronological age alone determining transition, this study indicated that personalised assessment of a patient’s psychological maturity, self-efficacy and their readiness as assessed by their carer are also important factors. In particular, selfefficacy which refers to patients’ knowledge of their disease and their capacity to take responsibility for their disease management appears to be important in successfully negotiating the transition process.12–14 A question494
naire assessing self-efficacy in adolescent IBD patients has been developed and validated by a group from Rotterdam and may be valuable in assessing a patient’s readiness to transition and also the quality and efficacy of any structured transition programme.15 This questionnaire has not however formally been assessed in adolescent IBD in Australia or New Zealand. Significant differences were found in the perceptions of paediatric and adult gastroenterologists regarding the importance of achievement of educational milestones, psychological maturity and growth/nutritional status in assessing readiness for transition. This variation in perception serves to highlight some of the paediatric specific issues surrounding the significant changes that occur socially and physiologically during adolescence and possibly represents different emphases in training between paediatric gastroenterologists and their adult counterparts. Nonetheless, psychological maturity and readiness as assessed by adult caregiver were both identified as being important determinants of readiness for transition by paediatric and adult gastroenterologists despite both being subjective measures of readiness for transfer. In contrast, an objective assessment tool such as the Transition Readiness Assessment Questionnaire (TRAQ), which has recently been validated in Boston, may be useful in assessing transition readiness in youth with special healthcare needs and to guide educational interventions by providers to support transition; however, the TRAQ is yet to be validated in the IBD setting.16 A key barrier to successful transition identified by this survey was poor communication as reflected by poor medical and surgical handover between paediatric and © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Transition in inflammatory bowel disease care
adult clinicians. Communication may be able to be improved through a period of overlapping care17 that may include joint visits, with the paediatric and adult physicians present in the same clinic or a visit or interview with the adult physician prior to transfer. Such an approach of joint clinic visits has been shown to improve readiness for transfer among IBD patients in the Netherlands.15 Patients’ lack of responsibility for their care was also identified as a major barrier to successful transition. Strategies aimed at improving patient education such as MyHealth Passport for IBD, a tool designed to assess the knowledge of patients and parents, may facilitate education and independence in the transitioning adolescent with IBD.14 Similar tools could be adopted as part of a structured transition programme in Australia and New Zealand. One of the key objectives of quality care in IBD refers to patient centredness.18 In paediatrics, there is a sense (at least among parents) that they have an active role in the direction of care for their children, a view that is upheld by paediatricians. This notion is key as patients move into transition. However, after moving to an adult service, adolescents often lack the maturity to understand this concept, that they have a role in their own healthcare and autonomy in the decision-making process. It is up to both paediatric and adult gastroenterologists to educate their adolescent patients not only about their disease but also about the importance of taking responsibility for their health so that they have the knowledge and confidence to influence their own care. How best to measure the success of structured transition programmes is a critical and challenging question. Evidence-based recommendations are lacking. There are some data from the cystic fibrosis and type 1 diabetes literature that structured transition programmes improve health outcomes including lung function tests and glycaemic control respectively as well as improve compliance and reduce the frequency of hospitalisation.9,19 However, most literature on the success of transition programmes is more descriptive reporting qualitative outcomes such as improved patient and carer satisfaction. Our results highlight deficits in current transition programmes for adolescents with IBD and illustrate a dichotomy of opinion between adult and paediatric gastroenterologists with regards to care and structure at the time of transition. Current clinical practices must be challenged. Structured transition programmes in IBD must
© 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
reflect the needs of adolescents and clinicians as highlighted in this paper. Looking beyond this transition, programmes in IBD should attempt to improve health outcomes such as increase rates of clinical and endoscopic remission, reduce rates of steroid use, surgery and hospitalisation and improve quality of life. Whether this can be achieved by a structured transition programme remains to be evaluated. Limitations to this study included the relatively low response rate of 41%. The opinions of the clinicians who did not participate in the survey may have been especially useful. Respondents working in metropolitan areas and in the public sector were overrepresented. This indicates that the results of this survey and models endorsed are biased towards the tertiary hospital setting and may not be representative of the views of exclusively private gastroenterologists or those gastroenterologists in geographically isolated settings.
Conclusion This study demonstrates for the first time that there may be deficiencies in transition practices in adolescent IBD in Australia and New Zealand with gastroenterologists reporting that current practices are not consistently preparing adolescents with IBD for transition to adult care. These deficiencies may be addressed through strategies aimed at improving communication and patient education. Differences in paediatric and adult gastroenterologist perceptions towards what constitutes optimal transition highlight the need for standardisation of transition care practices. Further studies are required to assess current practices and patient and parental expectations of care during the transition period. Such information may inform the development of a mutually agreed structured transition programme relevant to the needs of adolescents with IBD in Australia and New Zealand. It is hoped that a structured transition care programme will lead to improvement in patient knowledge, compliance, selfefficacy and other health-related outcomes in the future.
Acknowledgements Members of AIBDA, IBD-NZ and AusPGHAN who completed the survey. Professor Paul Pavli (ANU Medical School and ACT Health, Canberra Hospital Campus) for his critical review of the survey and manuscript.
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References 1 Kim S, Ferry G. Inflammatory bowel diseases in pediatric and adolescent patients: clinical, therapeutic and psychological considerations. Gastroenterology 2004; 126: 1550–60. 2 Wilson J, Hair C, Knight R, Catto-Smith A, Bell S, Kamm M et al. High incidence of inflammatory bowel disease in Australia: a prospective population based incidence study. Inflamm Bowel Dis 2010; 16: 1550–6. 3 Gearry RB, Richardson A, Frampton CM, Collett JA, Burt MJ, Chapman BA et al. High incidence of Crohn’s disease in Canterbury, New Zealand: results of an epidemiologic study. Inflamm Bowel Dis 2006; 12: 936–43. 4 Goodhand J, Dawson R, Hefferon M, Tshuma N, Swanson G, Wahed M et al. Inflammatory bowel disease in young people: the case for transition clinics. Inflamm Bowel Dis 2010; 16: 947–52. 5 Van Limbergen J, Russell RK, Drummond HE, Aldhous MC, Round NK, Nimmo ER et al. Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease. Gastroenterology 2008; 135: 1114–22. 6 Bousvaros A, Sylvester F, Kugathasan S, Szigethy E, Fiocchi C, Colletti R et al. Challenges in paediatric inflammatory bowel disease. Inflamm Bowel Dis 2006; 12: 885–913.
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7 Blum R, Garell D, Hodgman C, Jorissen T, Okinow N, Orr D et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 570. 8 Christie D, Viner R. Adolescent development. BMJ 2005; 330: 301–4. 9 Holmes-Walker D, Llewellyn A, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25. Diabet Med 2006; 24: 764–9. 10 Cole R, Ashok D, Kumar P, Razack A, Azaz A, Sebastian S. Comparative evaluation of outcomes in adolescents with IBD on transfer from paediatric to adult health care services: a case for structured transition. Gut 2012; 61: A23. 11 Sebastian S, Jenkins H, McCartney S, Ahmad T, Arnott I, Croft N et al. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. J Crohns Colitis 2012; 6: 830–44. 12 Hait E, Barendse R, Arnold J, Valim C, Sands B, Korzenik J et al. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr 2009; 48: 61–5.
13 McCartney S. Inflammatory bowel disease in transition: challenges and solutions in adolescent care. Frontline Gastroenterol 2011; 2: 237–41. 14 Benchimol E, Walters T, Kaufman M, Frost K, Fiedler K, Chinea Z et al. Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Inflamm Bowel Dis 2011; 17: 1131–7. 15 Zijlstra M, Breij L, van der Woude J, der Ridder L, van Pieterson M, Escher J. Assessment of self-efficacy during transition in adolescents with inflammatory bowel disease. J Crohns Colitis 2009; 3: S87. 16 Sawicki G, Lukens-Bull K, Yin X, SDemars N, Huang I, Livingood W et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ-Transition Readiness Assessment Questionnaire. J Pediatr Psycholol 2009; 36: 160–71. 17 Philpott J. Transitional care in inflammatory bowel disease. Gastroenterol Hepatol 2011; 7: 26–32. 18 Britto MT, DeVellis RF, Hornung RW, DeFriese GH, Atherton HD, Slap GB. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics 2004; 114: 1272–80. 19 Tuchman LK, Schwartz LA, Sawicki GS, Britto MT. Cystic fibrosis and transition to adult medical care. Pediatrics 2010; 125: 566–73.
© 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Perspectives of paediatric and adult gastroenterologists on transfer and transition care of adolescents with inflammatory bowel disease E. K. Wright,1 J. Williams,1,2 J. M. Andrews,3 A. S. Day,4 R. B. Gearry,4 P. Bampton,5 D. Moore,6 D. Lemberg,7 R. Ravikumaran,8 J. Wilson,9 P. Lewindon,10 G. Radford-Smith,11 J. Rosenbaum,12 A. Catto-Smith,12 P. V. Desmond,1 W. R. Connell,1 D. Cameron,12 G. Alex,12 S. J. Bell1 and P. De Cruz1 1 Department of Gastroenterology, St Vincent’s Hospital and University of Melbourne, 2Swinburne University of Technology, 12Royal Children’s Hospital, Melbourne, Victoria, 3Department of Gastroenterology and Hepatology, Royal Adelaide Hospital and University of Adelaide, 5Department of Gastroenterology and Hepatology, Flinders Medical Centre and Flinders University, 6Women’s and Children’s Hospital, Adelaide, South Australia, 7 Sydney Children’s Hospital, Sydney, New South Wales, 8University of Western Australia, Perth, Western Australia, 9Menzies Research Institute Tasmania and University of Tasmania, Hobart, Tasmania, 10Mater Health Services, University of Queensland, 11Queensland Institute of Medical Research, Inflammatory Bowel Diseases and Royal Brisbane and Women’s Hospital, Brisbane, Queensland, Australia, and 4Department of Medicine,
University of Otago, Christchurch, New Zealand
Key words transfer, transition, adolescent, inflammatory bowel disease. Correspondence Peter De Cruz, Department of Gastroenterology, St Vincent’s Hospital, 41 Victoria Parade, Fitzroy, Melbourne, Vic. 3065, Australia. Email: [email protected] Received 5 September 2013; accepted 8 January 2014. doi:10.1111/imj.12402
Abstract Background: Programmes specific to inflammatory bowel disease (IBD) that facilitate transition from paediatric to adult care are currently lacking. Aim: We aimed to explore the perceived needs of adolescents with IBD among paediatric and adult gastroenterologists and to identify barriers to effective transition. Methods: A web-based survey of paediatric and adult gastroenterologists in Australia and New Zealand employed both ranked items (Likert scale; from 1 not important to 5 very important) and forced choice items regarding the importance of various factors in faciitating effective transition of adolescents from paediatric to adult care. Results: Response rate among 178 clinicians was 41%. Only 23% of respondents felt that adolescents with IBD were adequately prepared for transition to adult care. Psychological maturity (Mean = 4.3, standard deviation (SD) = 0.70) and readiness as assessed by adult caregiver (Mean = 4, SD = 0.72) were prioritised as the most important factors in determining timing of transfer. Self-efficacy and readiness as assessed by adult caregiver were considered the two most important factors to determine timing of transition by both groups of gastroenterologists. Poor medical and surgical handover (Mean = 4.10, SD = 0.8) and patients’ lack of responsibility for their own care (Mean= 4.10, SD = 0.82) were perceived as major barriers to successful transition by both paediatric and adult gastroenterologists. Conclusions: Deficiencies exist in current transition care of adolescents with IBD in Australia and New Zealand. Standardising transition care practices with strategies aimed at optimising communication, patient education, self-efficacy and adherence may improve outcomes.
Introduction Inflammatory bowel disease (IBD) is a chronic, disabling condition that primarily affects young adults.1 The incidence of IBD in Australia and New Zealand is among the highest in the world with crude annual incidence rates of 29.3 per 100 000.2,3 The incidence of IBD in children is increasing with more than 25% of cases of IBD now being
Funding: None. Conflict of interest: None.
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diagnosed in patients under the age of 16.4 Childhoodonset IBD is characterised by extensive intestinal involvement and rapid disease progression.4,5 As adolescents move towards adulthood, there needs to be a shift in responsibility of care from their guardians to themselves, as well as the transfer of care from paediatric to adult gastroenterologists. The relapsing and remitting nature of IBD and its impact on the physical, developmental and psychological states of adolescent patients make successful transition an important aspect of patient care.6 © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
Transition in inflammatory bowel disease care
Transition in a healthcare context is defined as ‘the purposeful, planned movement of adolescents and young adults which chronic physical and medical conditions from child-centered to adult-oriented healthcare systems7’. Adolescence occurs between the onset of puberty and adulthood and is a time of significant emotional and cognitive development.8 The basic principles guiding transfer and transition of adolescents with chronic diseases from paediatric to adult care have been established.9 Preliminary evidence from the United Kingdom suggests that adolescents with IBD attending specialised transition clinics have improved outpatient clinic attendance, reduction in hospital admission rates and reduced need for surgery when compared with patients who do not attend a specialised transition service.10 As yet a structured transition programme for adolescents with IBD that has been mutually agreed on by paediatric and adult gastroenterologists does not exist in Australia or New Zealand and approaches are individual or centre specific. It has recently been suggested that there may be a disconnect between the opinions of paediatric and adult gastroenterologists regarding the ideal management of adolescents with IBD at the time of transition.11 The aim of this study was to determine the opinions of gastroenterologists regarding the adequacy of current transition programmes for adolescents with IBD in Australia and New Zealand and to identify barriers to effective transition. Differences in the perceived transition requirements for patients with IBD between adult and paediatric gastroenterologists were also explored. The study was undertaken on the premise that only once current inadequacies are identified can changes be implemented to clinical practice in the hope of improving disease outcomes.
Methods A web-based survey was sent to paediatric and adult gastroenterologists under the auspices of the Australian Inflammatory Bowel Disease Association (AIBDA), Inflammatory Bowel Diseases New Zealand (IBD-NZ) and the Australian Society of Paediatric Gastroenterology, Hepatology and Nutrition (AusPGHAN). The 25-item survey collected demographic details from respondents as well as information regarding the location and type of their practice. Questions focused around five key areas: (i) assessment of current preparedness of adolescents at the time of transfer and adequacy of current transition care; (ii) patient factors important in assessing readiness for transition; (iii) patient and disease factors important in determining the timing of transition; (iv) organisational, clinician and patient-related barriers to © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
successful transition; and (v) optimal communication methods and models for structured transition. Most items were rated on a 5-point Likert scale from 1 = not important to 5 = very important. For some questions, a forced choice response format was used, and respondents were asked to choose between several options. Results are expressed as mean Likert Scale Score (Mean) and standard deviation (SD). Differences between paediatric and adult gastroenterologists on continuous variables were explored using Mann–Whitney U-test non-parametric analyses, owing to significantly non-normally distributed data and unequal groups. Differences between paediatric and adult gastroenterologists on categorical variables were explored using Chi-squared analyses. The threshold for statistical significance was set at P < 0.05.
Results Participants The survey was sent to 178 clinicians, of whom 73 (41%) responded. Of the 73 respondents, 49 (66%) were adult gastroenterologists and 25 (34%) were paediatric gastroenterologists. Paediatric gastroenterologists had a slightly higher response rate than adult gastroenterologists (45% vs 39%; P = NS). All respondents were in active clinical practice. Ten per cent of survey respondents practised in New Zealand and the remainder were from Australia. Respondents came from all states and territories in Australia except for the Northern Territory, with Victoria and New South Wales being most heavily represented. All paediatric gastroenterologists and 92% of adult gastroenterologists listed metropolitan centres as the location of their primary practice. All clinicians worked at least part time in the public sector with 56% of paediatric gastroenterologists and 31% of adult gastroenterologists undertaking no private sector work. Twenty-four of 25 (94%) paediatric gastroenterologists and 35 of 49 (71%) adult gastroenterologists identified themselves as providers of transition care for IBD patients. All paediatric gastroenterologists delivered care to at least five patients with IBD aged 15–18, with 8/24 (32%) of respondents caring for more than 40 IBD patients in this age group. Twenty-four of 49 (50%) adult gastroenterologists delivered care to less than five patients with IBD aged 15–18 whereas 21/49 (44%) cared for between 5 and 20 patients in this age group.
Adolescent preparedness for transition and adequacy of current transition care Twenty-three per cent of respondents indicated that they felt that patients were adequately prepared for transition 491
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Table 1 Patient factors rated as most important for successful transition by paediatric and adult gastroenterologists
Readiness as assessed by caregiver Age Age 18 Completion of secondary schooling Disease in remission High score obtained in a self-efficacy questionnaire Total
Paediatric gastroenterologist n = 25
Adult gastroenterologist n = 48†
4 (16%) 2 (8%) 0 10 (40%) 0 9 (36%) 25 (100%)
18 (37.5%) 4 (8.3%) 1 (2.1%) 4 (8.3%) 4 (8.3%) 17 (35.4%) 48 (100%)
†One adult gastroenterologist did not answer this question.
from paediatric to adult care. Forty-nine per cent of respondents felt that patients were not adequately prepared for transition from paediatric to adult care. The remaining respondents were uncertain about the adequacy of preparation of adolescent patients for transition.
Readiness for transition Among both paediatric and adult gastroenterologists, the factors considered to be most important in determining readiness for transition were psychological maturity (Mean = 4.3, SD = 0.70) and readiness as assessed by adult caregiver (Mean = 4, SD = 0.72). The factors perceived to be relatively less important were chronological age (Mean = 3.5, SD = 0.89) and psychosexual maturity. There were significant differences between paediatric and adult gastroenterologists’ perceptions regarding the importance of individual factors used to determine readiness for transition (Table 1). Paediatric gastroenterologists rated achievement of educational milestones (U = 499.50, P < 0.001, Z = −3.75), psychological maturity (U = 410, P = 0.03, Z = −2.16), psychosexual maturity (U = 401.50, P = 0.001, Z = −2.44) and growth/nutritional status (U = 305, P < 0.001, Z = −3.72) as being more relevant in assessing readiness of patients for transition than did adult gastroenterologists (Fig. 1).
Disease factors for transition Disease factors were overall considered to be less important compared with other factors when planning transition from paediatric to adult care. Nonetheless of the disease factors considered, disease remission (Mean = 3.64, SD = 1) and need for pelvic surgery (Mean= 3.32, SD = 1.11) were perceived to be the most important.
of transfer χ2 (5) = 13.73, P = 0.01 (Table 1). Adult gastroenterologists tended to prioritise readiness as assessed by caregiver more frequently compared with paediatric gastroenterologists. In contrast to adult gastroenterologists, paediatric gastroenterologists tended to prioritise completion of secondary schooling as the most important patient factor to consider when determining timing for transition. Despite these overall differences in perception between the two groups, self-efficacy and readiness as assessed by adult caregiver were perceived to be the two most important factors in determining timing of transition among both paediatric and adult gastroenterologists.
Optimal age at which adolescents should be transferred The age range of 17–19 years was most frequently considered to be the most appropriate age for transition by both paediatric and adult gastroenterologists (63.5%).
Barriers to successful transition Both paediatric and adult gastroenterologists strongly agreed that patients’ lack of responsibility for their own care (Mean= 4.10, SD = 0.82) and poor medical and surgical handover (Mean = 4.10, SD = 0.8) represented barriers to successful transition. In particular, poor medical/surgical handover between paediatric and adult physicians/surgeons was perceived to be more of an issue by adult gastroenterologists than their paediatric colleagues (U = 449, P = 0.05, Z = −1.96). Paediatric gastroenterologists were more likely than adult gastroenterologists to agree that reduced frequency of adult appointments represented a barrier to successful transition (U = 419, P = 0.02, Z = −2.21) (Fig. 2).
Timing of transfer
Communication methods
Adult and paediatric gastroenterologists differed significantly in their opinions regarding determinants of timing
There was no clear agreement concerning which method of communication should be used as the primary tool at
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Figure 1 Differences between paediatric and adult gastroenterologists’ perceptions of the importance of educational milestones (A), psychological maturity (B) and growth/nutrition status (C) in facilitating transition from paediatric to adult care.
the time of transfer. A joint outpatient clinic (attended by patient, caregiver, paediatric and adult gastroenterologist) was favoured by 30% of respondents. A transfer meeting with patient, caregiver, nurse coordinator, paediatric and adult gastroenterologist was endorsed by 27% of respondents and a multidisciplinary meeting (MDM) with paediatric and adult gastroenterologist and nurse coordinator (without patient and caregiver) was supported by 23% of respondents. Paediatric gastroenterologists (36%), more so than adult gastroenterologists (22%), identified a transfer meeting, with the patient present, as the most preferred communication method at the time of transfer. Thirtyone per cent of adult gastroenterologists, compared with only 8% of their paediatric colleagues preferred a MDM, without the patient and caregiver present, as an optimal method for communication. However, there was no sig© 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
nificant difference overall in the responses of paediatric and adult gastroenterologists regarding the optimal methods for communication.
Models for structured transition An optimal model for transition was not clearly agreed on by all respondents. However, a model that varied depending on the perceived need of the patient and the complexity and severity of disease was the most favoured model (26%). The second most frequently endorsed model was one which involved an overlap of appointments, where the patient attended alternating paediatric and adult consultations for 6–12 months over the transition period (18%). Similarly, a single clinic appointment attended by patient, caregiver, nurse coordinator, 493
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Figure 2 Differences between paediatric and adult gastroenterologists’ perception of poor medical/surgical handover (A) and reduced frequency of adult appointments (B) as barriers to transition from paediatric to adult care.
paediatric and adult gastroenterologist was also felt to be an appropriate model for structured transition (18%).
Discussion This is the first Australian and New Zealand study on transition care in IBD and provides an insight into the current perspectives of paediatric and adult gastroenterologists. Less than a quarter of respondents to this survey felt that adolescents were adequately prepared for the transition from paediatric to adult care suggesting that there may be deficiencies in current transition and transfer practices of patients with IBD from paediatric to adult care in Australia and New Zealand. This study accordingly sought to explore factors influencing current transition practices in relation to assessment of patient readiness for transition, timing of transition, barriers to successful transition, communication methods and models for structured transition care. In Australia and New Zealand, timing of transfer of adolescents with chronic medical conditions from paediatric to adult care is usually determined by the patient’s chronological age. The present study suggests that a more flexible approach is required. Rather than chronological age alone determining transition, this study indicated that personalised assessment of a patient’s psychological maturity, self-efficacy and their readiness as assessed by their carer are also important factors. In particular, selfefficacy which refers to patients’ knowledge of their disease and their capacity to take responsibility for their disease management appears to be important in successfully negotiating the transition process.12–14 A question494
naire assessing self-efficacy in adolescent IBD patients has been developed and validated by a group from Rotterdam and may be valuable in assessing a patient’s readiness to transition and also the quality and efficacy of any structured transition programme.15 This questionnaire has not however formally been assessed in adolescent IBD in Australia or New Zealand. Significant differences were found in the perceptions of paediatric and adult gastroenterologists regarding the importance of achievement of educational milestones, psychological maturity and growth/nutritional status in assessing readiness for transition. This variation in perception serves to highlight some of the paediatric specific issues surrounding the significant changes that occur socially and physiologically during adolescence and possibly represents different emphases in training between paediatric gastroenterologists and their adult counterparts. Nonetheless, psychological maturity and readiness as assessed by adult caregiver were both identified as being important determinants of readiness for transition by paediatric and adult gastroenterologists despite both being subjective measures of readiness for transfer. In contrast, an objective assessment tool such as the Transition Readiness Assessment Questionnaire (TRAQ), which has recently been validated in Boston, may be useful in assessing transition readiness in youth with special healthcare needs and to guide educational interventions by providers to support transition; however, the TRAQ is yet to be validated in the IBD setting.16 A key barrier to successful transition identified by this survey was poor communication as reflected by poor medical and surgical handover between paediatric and © 2014 The Authors Internal Medicine Journal © 2014 Royal Australasian College of Physicians
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adult clinicians. Communication may be able to be improved through a period of overlapping care17 that may include joint visits, with the paediatric and adult physicians present in the same clinic or a visit or interview with the adult physician prior to transfer. Such an approach of joint clinic visits has been shown to improve readiness for transfer among IBD patients in the Netherlands.15 Patients’ lack of responsibility for their care was also identified as a major barrier to successful transition. Strategies aimed at improving patient education such as MyHealth Passport for IBD, a tool designed to assess the knowledge of patients and parents, may facilitate education and independence in the transitioning adolescent with IBD.14 Similar tools could be adopted as part of a structured transition programme in Australia and New Zealand. One of the key objectives of quality care in IBD refers to patient centredness.18 In paediatrics, there is a sense (at least among parents) that they have an active role in the direction of care for their children, a view that is upheld by paediatricians. This notion is key as patients move into transition. However, after moving to an adult service, adolescents often lack the maturity to understand this concept, that they have a role in their own healthcare and autonomy in the decision-making process. It is up to both paediatric and adult gastroenterologists to educate their adolescent patients not only about their disease but also about the importance of taking responsibility for their health so that they have the knowledge and confidence to influence their own care. How best to measure the success of structured transition programmes is a critical and challenging question. Evidence-based recommendations are lacking. There are some data from the cystic fibrosis and type 1 diabetes literature that structured transition programmes improve health outcomes including lung function tests and glycaemic control respectively as well as improve compliance and reduce the frequency of hospitalisation.9,19 However, most literature on the success of transition programmes is more descriptive reporting qualitative outcomes such as improved patient and carer satisfaction. Our results highlight deficits in current transition programmes for adolescents with IBD and illustrate a dichotomy of opinion between adult and paediatric gastroenterologists with regards to care and structure at the time of transition. Current clinical practices must be challenged. Structured transition programmes in IBD must
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reflect the needs of adolescents and clinicians as highlighted in this paper. Looking beyond this transition, programmes in IBD should attempt to improve health outcomes such as increase rates of clinical and endoscopic remission, reduce rates of steroid use, surgery and hospitalisation and improve quality of life. Whether this can be achieved by a structured transition programme remains to be evaluated. Limitations to this study included the relatively low response rate of 41%. The opinions of the clinicians who did not participate in the survey may have been especially useful. Respondents working in metropolitan areas and in the public sector were overrepresented. This indicates that the results of this survey and models endorsed are biased towards the tertiary hospital setting and may not be representative of the views of exclusively private gastroenterologists or those gastroenterologists in geographically isolated settings.
Conclusion This study demonstrates for the first time that there may be deficiencies in transition practices in adolescent IBD in Australia and New Zealand with gastroenterologists reporting that current practices are not consistently preparing adolescents with IBD for transition to adult care. These deficiencies may be addressed through strategies aimed at improving communication and patient education. Differences in paediatric and adult gastroenterologist perceptions towards what constitutes optimal transition highlight the need for standardisation of transition care practices. Further studies are required to assess current practices and patient and parental expectations of care during the transition period. Such information may inform the development of a mutually agreed structured transition programme relevant to the needs of adolescents with IBD in Australia and New Zealand. It is hoped that a structured transition care programme will lead to improvement in patient knowledge, compliance, selfefficacy and other health-related outcomes in the future.
Acknowledgements Members of AIBDA, IBD-NZ and AusPGHAN who completed the survey. Professor Paul Pavli (ANU Medical School and ACT Health, Canberra Hospital Campus) for his critical review of the survey and manuscript.
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References 1 Kim S, Ferry G. Inflammatory bowel diseases in pediatric and adolescent patients: clinical, therapeutic and psychological considerations. Gastroenterology 2004; 126: 1550–60. 2 Wilson J, Hair C, Knight R, Catto-Smith A, Bell S, Kamm M et al. High incidence of inflammatory bowel disease in Australia: a prospective population based incidence study. Inflamm Bowel Dis 2010; 16: 1550–6. 3 Gearry RB, Richardson A, Frampton CM, Collett JA, Burt MJ, Chapman BA et al. High incidence of Crohn’s disease in Canterbury, New Zealand: results of an epidemiologic study. Inflamm Bowel Dis 2006; 12: 936–43. 4 Goodhand J, Dawson R, Hefferon M, Tshuma N, Swanson G, Wahed M et al. Inflammatory bowel disease in young people: the case for transition clinics. Inflamm Bowel Dis 2010; 16: 947–52. 5 Van Limbergen J, Russell RK, Drummond HE, Aldhous MC, Round NK, Nimmo ER et al. Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease. Gastroenterology 2008; 135: 1114–22. 6 Bousvaros A, Sylvester F, Kugathasan S, Szigethy E, Fiocchi C, Colletti R et al. Challenges in paediatric inflammatory bowel disease. Inflamm Bowel Dis 2006; 12: 885–913.
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7 Blum R, Garell D, Hodgman C, Jorissen T, Okinow N, Orr D et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 1993; 570. 8 Christie D, Viner R. Adolescent development. BMJ 2005; 330: 301–4. 9 Holmes-Walker D, Llewellyn A, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15–25. Diabet Med 2006; 24: 764–9. 10 Cole R, Ashok D, Kumar P, Razack A, Azaz A, Sebastian S. Comparative evaluation of outcomes in adolescents with IBD on transfer from paediatric to adult health care services: a case for structured transition. Gut 2012; 61: A23. 11 Sebastian S, Jenkins H, McCartney S, Ahmad T, Arnott I, Croft N et al. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. J Crohns Colitis 2012; 6: 830–44. 12 Hait E, Barendse R, Arnold J, Valim C, Sands B, Korzenik J et al. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr 2009; 48: 61–5.
13 McCartney S. Inflammatory bowel disease in transition: challenges and solutions in adolescent care. Frontline Gastroenterol 2011; 2: 237–41. 14 Benchimol E, Walters T, Kaufman M, Frost K, Fiedler K, Chinea Z et al. Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Inflamm Bowel Dis 2011; 17: 1131–7. 15 Zijlstra M, Breij L, van der Woude J, der Ridder L, van Pieterson M, Escher J. Assessment of self-efficacy during transition in adolescents with inflammatory bowel disease. J Crohns Colitis 2009; 3: S87. 16 Sawicki G, Lukens-Bull K, Yin X, SDemars N, Huang I, Livingood W et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ-Transition Readiness Assessment Questionnaire. J Pediatr Psycholol 2009; 36: 160–71. 17 Philpott J. Transitional care in inflammatory bowel disease. Gastroenterol Hepatol 2011; 7: 26–32. 18 Britto MT, DeVellis RF, Hornung RW, DeFriese GH, Atherton HD, Slap GB. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics 2004; 114: 1272–80. 19 Tuchman LK, Schwartz LA, Sawicki GS, Britto MT. Cystic fibrosis and transition to adult medical care. Pediatrics 2010; 125: 566–73.
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