Health Care Transition Outcomes in Inflammatory Bowel Disease: A Multinational Delphi Study

Abstract

Background Transition programmes are designed to prepare adolescent inflammatory bowel disease [IBD] patients for transfer to adult care. It is still unclear which outcome parameters define ‘successful transition’. Therefore, this study aimed to identify outcomes important for success of transition in IBD. Methods A multinational Delphi study in patients, IBD nurses, and paediatric and adult gastroenterologists was conducted. In stage 1, panellists commented on an outcome list. In stage 2, the refined list was graded from 1 to 9 [least to very important], by an expert and a patient panel. In stage 3, the expert panel ranked important outcomes from 1 to 10 [least to most important]. Descriptive statistics and Mann–Whitney U-tests were performed. Results The final item list developed in stage 1 was tested by the expert [n = 74 participants, 52.7% paediatric] and patient panel [n = 61, aged 16–25 years, 49.2% male]. Respectively, ten and 11 items were found to be important by the expert and patient panel. Both panels agreed on eight of these items, of which six reflected self-management skills. In stage 3, the expert panel formed a top-ten list. The three most important items were: decision-making regarding IBD [mean score 6.7], independent communication [mean score 6.3] and patient satisfaction [mean score 5.8]. Conclusion This is the first study identifying outcomes that IBD healthcare providers and patients deem important factors for successful transition. Self-management skills were considered more important than IBD-specific items. This is a first step to further define success of transition in IBD and subsequently evaluate the efficacy of different transition models.

Sinomenine hydrochloride ameliorates dextran sulfate sodium‑induced colitis in mice by modulating the gut microbiota composition whilst suppressing the activation of the NLRP3 inflammasome

“…Ulcerative colitis (UC) is a complex, chronic and non-specific inflammatory condition of the gastrointestinal tract ( 1 ). It is one of the most common subtypes of inflammatory bowel disease ( 2 ). The etiology of UC remains unclear, although it is considered to involve genetic, environmental and immunological factors, all of which contribute to the disease at least in part by interacting with the gut microbiota ( 3 , 4 ).…”

Effect of joint transition visits on quality of life in adolescents with inflammatory bowel diseases: a protocol for a prospective, randomised, multicentre, controlled trial (TRANS-IBD)

“…Based on the most up-to date observations, individual, healthcare service and social outcomes should be taken equally into account as composite endpoints of a transition process in IBD. [4][5][6] Transitional interventions In a recent systematic review, several different structured transition interventions were identified aiming to improve transition-related outcomes. 7 Joint visits were the most frequently applied interventions, which were held under different circumstances and were organised by multidisciplinary groups of different compositions all around the world.…”

“…Based on the recommendation of a recently conducted multinational Delphi study on the transition care of adolescent with IBD, HRQoL should be assessed with IMPACT-III questionnaire at 1-year post-transfer. 6…”

“… 4 5 According to a multinational IBD-specific Delphi study, individual outcomes during transition were considered more important than disease-related items. 6 As transitional care is a complex process, it is difficult to define and prioritise endpoints. Based on the most up-to date observations, individual, healthcare service and social outcomes should be taken equally into account as composite endpoints of a transition process in IBD.…”

Transitional Care for Patients with Inflammatory Bowel Disease: Japanese Experience

“…An international Delphi study conducted by experts of transitional care from 15 countries, including physicians, nurses, psychologists, transition program managers, and research director, presented key elements for, and indicators of, a successful transition [32]. Similarly, a multinational expert panel made up of IBD nurses and pediatric and adult gastroenterologists investigated the outcomes that reflect successful transition in IBD patients using a Delphi method [33]. The principal key elements are shown in Table 2.…”