Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care

Hait, Elizabeth J.; Arnold, Janis; Fishman, Laurie N.

doi:10.1097/01.mib.0000194182.85047.6a

Cited by 97 publications

(94 citation statements)

References 10 publications

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“…The perceived lack of information about AHC may be due to the failure of transition planning. Transition protocols that include guidance about appropriate levels of information to be provided to adolescents and parents at regular intervals could be helpful in starting early enough with provision of information and by supporting autonomy and self-responsibility as the basis to develop/build a well-planned time schedule for a smooth transfer [9,21,22]. However, a recent study from Australia showed that a documented transition plan was available only among 13% of young adults older than 18 years and treated at a pediatric hospital [11] providing evidence of failure of transition planning.…”

Section: Discussionmentioning

confidence: 99%

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

2010

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The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to transfer to adult health care was higher than the upper age limits for admission to pediatric health care in many European countries. Anxiety and a lack of information of both adolescents and their parents were among the most important barriers for a smooth and timely transfer according to adolescents and parents. Abstract The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/ 27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to tra...

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Section: Discussionmentioning

confidence: 99%

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

2010

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“…Clinicians must be sensitive to this transition and the barriers it may present. It has been recommended that the child be approached from the commonly accepted developmental stages, roughly defined chronology by ages 11-13, 14-16, 17-19, and 20-23 [52] . These are certain traits needed to make a successful transition of care and allow for the ability to navigate through the adult healthcare milieu.…”

Section: Transition Of Carementioning

confidence: 99%

Special issues in pediatric inflammatory bowel disease

Dubinsky¹

2007

WJG

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The incidence of pediatric inflammatory bowel disease (IBD) is rising and recent advances in diagnostics and therapeutics have improved the care provided to these children. There are distinguishing features worth noting between early onset and adult onset IBD. Physical and psychosocial development remains a critical target for the comprehensive management of pediatric IBD. Children are not just little adults and consideration must be given to the stages of development and how these stages impact disease presentation and management. The final stage will be the transition from pediatric care to that of adult oriented care and special consideration must be given to make this a successful process. This review highlights special considerations in the management of the child with IBD.

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“…The transition process should therefore consist of a stepwise programme with ageappropriate checklists of tasks for the patient, as well as for the medical team. 3,8,9 Currently, there are no tools to evaluate the effect of different IBD transition programmes. 9 In 2006, a transition clinic for IBD patients between 14 and 18 years was initiated in the Erasmus MC -Sophia Children's Hospital.…”

Section: Introductionmentioning

confidence: 99%

Self-efficacy in adolescents with inflammatory bowel disease: A pilot study of the “IBD-yourself”, a disease-specific questionnaire

Zijlstra

Bie

Breij

et al. 2013

Journal of Crohn's and Colitis

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Background and aims: Successful transfer of adolescent IBD patients to an adult gastroenterologist requires anticipation of a changing role for patients and their parents. Self-efficacy has been demonstrated to be important for transfer readiness. We therefore developed an IBD-specific questionnaire (the "IBD-yourself") to assess self-efficacy in adolescent IBD patients visiting a transition clinic. Our aim was to evaluate the reliability of this questionnaire, and to describe the self-efficacy level of adolescent IBD patients, and the perceived self-efficacy level according to their parents. Methods: In a cross-sectional design, 50 IBD patients (aged 14-18 years) and 40 parents completed the "IBD-yourself" questionnaire. Internal reliability was assessed by standardised Cronbach's α. Median self-efficacy scores per domain were calculated. Results: The domains of the questionnaire for adolescents showed good to excellent internal consistency, with Cronbach's α ranging from 0.64 to 0.93. The domains of the parental questionnaire had Cronbach's α ranging from 0.47 to 0.93. Median self-efficacy scores of adolescents varied from 70 to 100%. In comparison with patient's self-assessment, parents thought that their child was more A v a i l a b l e o n l i n e a t w w w . s c i e n c e d i r e c t . c o m ScienceDirectJournal of Crohn's and Colitis (2013) 7, e375-e385 Downloaded from https://academic.oup.com/ecco-jcc/article-abstract/7/9/e375/427279 by guest on 07 June 2019 self-efficacious in knowledge of IBD and diagnostic tests, self-management of medication use, and transfer readiness. Length of time since first visit to the transition clinic was positively correlated with several domains of the questionnaire, such as independent behaviour at the outpatient clinic, and transfer readiness. Conclusion: The "IBD-yourself" questionnaire is a first step toward evaluating quality and efficacy of IBD transition programmes. Paediatric gastroenterologists should be aware that parents do not always accurately assess the self-efficacy of their child.

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Educate, communicate, anticipate-practical recommendations for transitioning adolescents with IBD to adult health care

Cited by 97 publications

References 10 publications

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents

Special issues in pediatric inflammatory bowel disease

Self-efficacy in adolescents with inflammatory bowel disease: A pilot study of the “IBD-yourself”, a disease-specific questionnaire

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