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ON003. The perception of inflammatory bowel disease nurses on transition of adolescents with colitis & Crohn's disease from paediatric to adult services

Y. Houston1, J. Lindsay2, S. McCartney2, N. Croft2, R. Russell2, T. Ahmad2, H. Jenkins2, I. Arnott3, S. Sebastian1

1Hull & East Yorkshire NHS Trust, Hull, United Kingdom; 2Adolescent & Young Persons Section, British Society of Gastroenterology, London, United Kingdom; 3Western General Hospital, Edinburgh, United Kingdom

Aim: The ideal transition service for adolescents with inflammatory bowel disease to transfer from a child to adult centred healthcare environment is not defined. We aimed to identify the transitional needs in this group of patients by surveying the perspectives of the healthcare professionals involved in their care.

Materials and Methods: A postal questionnaire designed for self completion was developed focussing on transitional needs perceived by IBD nurses. The questions included both open questions and closed questions with a 5 point Likert scale response format anchored by ‘not important’, ‘very important’ and ‘essential’. Demographic and practice characteristics were described as proportions. Mean scores and standard deviations were calculated for the importance to each attribute on the Likert scale. Comparison for subgroups were performed using Fishers exact test and ANOVA.

Table 1
AspectNumber (%) rating as very important and essentialScore, mean±SD
Understanding of disease63 (68.5%)4.58±0.73
Understanding of treatment65 (70.8%)4.64±0.62
Disease in remission @ transfer18 (19.6%)3.50±1.20
Ability to have endoscope evaluation without general anaesthetic29 (31.5%03.97±0.96
Ability to attend clinics without parents20 (21.7%03.71±1.02
Ability to obtain and take medications without assistance54 (58.7%)4.49±0.73
Understanding of impact of smoking and alcohol use on disease49 (53.2%)4.38±0.75
Understanding of impact of diet16 (17.3%)3.80±0.77
Proximity of IBD services to patients residence11 (11.9%)3.38±0.97
Membership of patient group5 (5.4%)2.86±1.12

Results: Questionnaires were sent to 163 practicing IBD nurses of which 92 responded (response rate 55%). 69% of the respondents worked in a teaching hospital setting. While most respondents (88/92) were interested in transition care and considered structured transition as very important (82/92), only 49% (45/92) were actually involved in its delivery. Overall 70.6% of nurses felt they were not adequately trained in care of adolescents with chronic disease .Only a quarter felt that the adolescents were fully prepared at the time of transfer with the 2 main areas of inadequate preparation being self advocacy and co-ordination of care. Patients' psychological needs and lack of independence were considered the most challenging aspects in caring for this group of patients with mean ranking scores of 2.33 and 2.66 respectively. 53/92 respondents considered age 15–16 as the appropriate age to initiate transition and 72% considered age 17–18 as appropriate to complete transfer. School leaving was considered the highest ranked milestone to complete transfer with 32 of the respondents ranking this the highest. Patients understanding of disease and its treatment and ability to take medications independently were considered the most important aspects for a successful transition of care (see table 1).

Conclusions: This survey summarises the needs for a successful transition of IBD patients from an IBD nurses perspective. Lack of advocacy, independence and co-ordination has been identified the areas of inadequate preparation. Factors of perceived importance for a successful transfer of care are identified.