None listed
Conditions
Brief summary
Despite multiple studies reporting outcomes separately in both adult and paediatric cohorts and existing literature about transition care, little data has been published regarding the outcomes of patients with paediatric onset Inflammatory Bowel Disease (IBD) in the years after they have entered adult care. This is important as major changes in transition practices are currently being recommended without knowing what is actually happening to this group of IBD patients and what is needed. This study aims to identify the physical and psychosocial outcomes of this cohort, which may have been adversely influenced by their transition process, in addition to patient perspectives of the process. The project will achieve its aims by using a database from the Women’s and Children’s Hospital which contains a list of patients with paediatric onset IBD that have since transitioned into adult care (defined as having turned 18 at the time of interrogating the database). Participants will be contacted and invited to participate in a survey which will collect data regarding basic demographic information, IBD-associated health outcomes, transition experiences and perceived positives and negatives from the transition process. Health outcomes of this population will then be compared to both local and published data of adult onset IBD patients of similar disease duration. Current guidelines of management of IBD in this cohort will also be compared to the study group. From this information, obstacles to optimal transition will be highlighted, and patients views obtained. These data will be vital to guide the successful development of new and improved transition programs which optimise patient care. This has the potential to improve disease-specific and psychological outcomes for these patients and thus also reduce the direct and indirect economic burden in this cohort.
Interventions
This study aims to identify the physical and psychosocial outcomes of patients with paediatric onset IBD who have transitioned to adult care, which may have been adversely influenced by their transition process. We aim to identify these outcomes and patient perspectives of the process through a questionnaire.
The questionnaire will be given once during the observational period and will look at their IBD from the time of diagnosis until the date of the questionnaire (All patients included - maxi
This study aims to identify the physical and psychosocial outcomes of patients with paediatric onset IBD who have transitioned to adult care, which may have been adversely influenced by their transition process. We aim to identify these outcomes and patient perspectives of the process through a questionnaire. The questionnaire will be given once during the observational period and will look at their IBD from the time of diagnosis until the date of the questionnaire (All patients included - maximum 10years). The questionnaire does not have a specific name. The entire study will run for 1 year.
Sponsors
SA Department of Health
Eligibility
Sex/Gender
All
Age
18 Years to 28 Years
Healthy volunteers
No
Inclusion criteria
>18years of age Diagnosis of IBD in paediatric years Has to have transitioned to adult care
Exclusion criteria
Age<17years
Outcome results
None listed