Abstract
Background
inflammatory bowel disease (IBD) is a chronic disease with an increasing incidence in the paediatric population. We explored the experiences of two groups of patients, those who transitioned directly from the paediatric to the adult service before the transitional IBD clinic was established, referred to as ‘adult’ and those who engaged in the new transitional clinic, referred to as ‘transitional’.
Methods
Sixteen (8 in each group as described above) out of 20 suitable patients participated. Patients were administered the IBD Questionnaire (IBDQ), Kessler Psychological Distress Scale (K10), Patient- Doctor Relationship Questionnaire (PDRQ-9) and Stressful Life Events Questionnaire. A semi-structured interview was administered to patients and carers about their experiences of diagnosis, paediatric care, transition to adult services and adult care.
Results
The average age of participants in both groups was 17. The transitional clinic had a higher proportion of Crohn’s disease. In the adult group, there were more males and the reverse in the transitional group. The adult clinic patients had more active disease, use of steroids, and emergency department presentations. The mean CRP of 36 mg/l at first visit to the adult clinic improved to 12 mg/l, at last, follow-up whereas mean CRP at first and last visit to the transitional clinic remained at 2 mg/l. Both clinics had similar rates of compliance and attendance. In the transitional and adult clinics respectively the mean IBDQ was 193 (SD=31) and 174 (SD = 22) with higher scores reflecting better health-related quality of life, the K10 mean score was 16 (SD = 7.5) and 17.5 (SD = 4.3) indicating a moderate level of distress, the PDRQ-9 mean scores were 4.3/5 (SD = 0.75) and 4.8/5 (SD = 0.4) indicating good therapeutic relationships. Both groups reported a similar number of stressful life events. Key themes were identified in both patient and carer interviews: (1) Diagnosis and illness: Diagnostic uncertainty, frustration at the diagnostic process, and the importance of finding a doctor you trust. (2) Maturity: growing up fast for some and seeking independence, growing up slowly for others while non-ill peers matured faster. (3) Carer adjustment: The central role of mothers and fathers as carers. Some adolescents feel highly responsible for their parents’ and families’ well-being.
Conclusion
Patients with IBD and their carers face particular difficulties during the period of transition from a paediatric to adult service. These are factors specific to the illness and factors related to maturation and development. There should be flexibility around maturity which is not rigidly age-based but instead based on the specific developmental needs of different families and adolescents.
Stressful life events, depression, and the moderating role of psychophysiological reactivity in patients with pediatric inflammatory bowel disease
