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Poster presentations: Clinical: Diagnosis and Outcome 2020

P134 Patient empowerment in inflammatory bowel disease (IBD): early education at a new diagnosis IBD clinic (NDC)

V.A. Fenech1, N. Kamperidis1, T. Tyrrell1, L. Dyall1, R. Fofaria1, R. Misra1, S. Barber2, S. Randall3, J. Shah4, N. Arebi1

1St Mark’s Hospital, Department of Gastroenterology, London, UK, 2National Institute for Health Research, Applied Research Collaborations, Northwest London, UK, 3Patient Information Forum, Head of Strategy and Partnership, London, UK, 4Crohns and Colitis UK, Publications and Information Manager, London, UK

Background

IBD is a chronic condition that affects young and older people. Co-existing diseases are common. Patient-centred care includes education and support to empower patients and is a recognised dimension of high-quality care. Patient empowerment with knowledge, skills and confidence (‘patient activation’) is associated with better outcomes in many chronic diseases. We aimed to measure patient activation in recently diagnosed IBD patients and to identify factors associated with levels of activation.

Methods

A NDC was set up at St Mark’s Hospital to offer patients education, information resources and signposts to verified information sources. Patient activation was measured using the Patient Activation Measure (PAM®) tool (Insignia Health) before and after the first consultation. PAM® is a validated questionnaire with 13 questions to generate an activation score ranging from 1 to 4. Non-activation was defined as PAM levels 1 and 2. Demographic (age in years (SD)), disease specific characteristics and anxiety (Generalised Anxiety Disorder Scale, GAD-2) and depression [Patient Health Questionnaire (PHQ-2)] data were collated at the first visit. The National Statistics Socio-economic classification (NS-SEC) was used to classify socio-economic status (SES). Categorical variables were analysed with chi-square test and numerical variables with Student’s t-test.

Results

Twenty-nine patients (51.7% male) attended NDC (ulcerative colitis = 15, Crohn’s disease = 10, unclassified IBD = 4). 28 completed PAM questionnaires. Mean age was 43.2 ( ± 16.4). 5/28 had a family history of IBD, 6/28 were smokers, 11/28 had another chronic condition, and 16/28 were of non-White ethnic background. Sixty-nine% had active disease. SES and psychological scores were available for 14/28 and 16/28 patients, respectively. Fifty per cent (14/28) of patients were non-activated before NDC; 57.1% (8/14) showed an improvement in activation after NDC. Mean age for activated and non-activated patients was 40.6 ( ± 19.0) and 46.6 ( ± 13.9), respectively (p = 0.35). There was no association between gender, family history, smoking, co-morbidity, ethnic background and SES with activation. None of the four patients (4/16) who scored for anxiety or depression were activated compared with 50% (6/12) of non-anxious/depressed patients (p = 0.07). No patients (0/7) in intermediate or higher SES were activated compared with 43% (3/7) of lower SES (p = 0.05).

Conclusion

Most non-activated patients had improved activation after attending NDC. Anxiety and depression may contribute to non-activation. Early assessment of patient activation may guide healthcare providers to offer individualised support. Further studies to evaluate the sustainability of patient activation and its effect on clinical outcomes are ongoing.