scholarly journals Design considerations for an eHealth decision support tool in inflammatory bowel disease self-management

2018 ◽  
Vol 48 (6) ◽  
pp. 674-681 ◽  
Author(s):  
Belinda D. Jackson ◽  
Danny Con ◽  
Peter De Cruz
Keyword(s):  
Inflammatory Bowel Disease ◽  
Decision Support ◽  
Bowel Disease ◽  
Decision Support Tool ◽  
Self Management ◽  
Support Tool ◽  
Design Considerations ◽  
Inflammatory Bowel

scholarly journals P259 Systematic review of prognostic factors affecting the acquisition of transition readiness skills in patients with inflammatory bowel disease

2020 ◽  
Vol 14 (Supplement_1) ◽  
pp. S279-S279
Author(s):  
L JOHNSON ◽  
M Lee ◽  
G Jones ◽  
A Lobo
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Self Efficacy ◽  
Self Management ◽  
Factors Affecting ◽  
Disease Knowledge ◽  
Transition Readiness ◽  
Modifiable Factors ◽  
Inflammatory Bowel ◽  
Readiness Skills

Abstract Background Around 25% of patients with inflammatory bowel disease (IBD) are diagnosed before the age of 20, meaning transition from paediatric to adult healthcare is inevitable for some. Good transition is important to maintain quality of care, and poor transition can result in adverse outcomes such as clinic and medication non-adherence. Certain skills are required in order for someone to be ready to transition, and the aim of this study was to identify modifiable and non-modifiable factors affecting the development of these skills in young people with IBD. Methods This review was registered on the PROSERO database (CRD42019152272) and conducted in line with PRISMA guidelines. Studies were included if they (1) explored factors affecting the acquisition of transition readiness skills in IBD patients 2) were written in English (3) were published since 1999. The databases MEDLINE, CINAHL and PsychINFO were searched from September - October 2019. Bias was assessed using the Quality in Prognostic Studies tool. Results Searches identified 822 papers and 27 full texts were retrieved. Sixteen papers were included in the final review, reporting on 1770 patients ranging from 10–29 years of age. Fourteen studies were cross-sectional and two longitudinal. Six assessed transition readiness, five self-management, two disease knowledge, one medication knowledge, one health literacy, and one both disease knowledge and self-management. Modifiable factors found were increased provider-communication about transition, transition duration, and health care satisfaction. Participant self-efficacy was found to be significant for three studies, and increased parent autonomy granting was related to higher disease knowledge in one study. Non-modifiable factors identified were age, sex, socioeconomic score, participant educational level and ethnicity. Nine studies showed increased age as a positive prognostic factor, and two additional papers found an effect for certain domains assessed. Four studies showed higher scores for females, and one study demonstrated higher self-rated self-efficacy scores for males. Disease-related non-modifiable factors identified were IBD family history, age at diagnosis, and absence from school. Conclusion This study identified five potentially modifiable factors. Strategies or interventions to address these in the IBD population transitioning to adult care might lead to improved experience and outcomes. This review also identified eight non-modifiable factors. This may allow healthcare and allied professionals to identify those at an increased risk of not developing the necessary competencies for transition and adapting the way in which they approach transition for each individual.

O0038 SELF-MANAGEMENT OF INFLAMMATORY BOWEL DISEASE IN TEENAGERS AND YOUNG ADULTS

2004 ◽  
Vol 39 (Supplement 1) ◽  
pp. S22 ◽  
Author(s):  
S. L. Attia ◽  
A. Kurbegov ◽  
J. B. Kalman ◽  
J. D. Thomas ◽  
P. L. Fain ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Young Adults ◽  
Bowel Disease ◽  
Self Management ◽  
Teenagers And Young Adults ◽  
Inflammatory Bowel

scholarly journals Supported online self-management versus care as usual for symptoms of fatigue, pain and urgency/incontinence in adults with inflammatory bowel disease (IBD-BOOST): study protocol for a randomised controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Christine Norton ◽  
Jonathan Syred ◽  
Sally Kerry ◽  
Micol Artom ◽  
Louise Sweeney ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Symptom Relief ◽  
Management Programme ◽  
Self Management ◽  
Global Rating ◽  
Urgency Incontinence ◽  
Inflammatory Bowel ◽  
The Uk

Abstract Background Despite being in clinical remission, many people with inflammatory bowel disease (IBD) live with fatigue, chronic abdominal pain and bowel urgency or incontinence that limit their quality of life. We aim to test the effectiveness of an online self-management programme (BOOST), developed using cognitive behavioural principles and a theoretically informed logic model, and delivered with facilitator support. Primary research question In people with IBD who report symptoms of fatigue, pain or urgency and express a desire for intervention, does a facilitator-supported tailored (to patient needs) online self-management programme for fatigue, pain and faecal urgency/incontinence improve IBD-related quality of life (measured using the UK-IBDQ) and global rating of symptom relief (0–10 scale) compared with care as usual? Methods A pragmatic two-arm, parallel group randomised controlled trial (RCT), of a 12-session facilitator-supported online cognitive behavioural self-management programme versus care as usual to manage symptoms of fatigue, pain and faecal urgency/incontinence in IBD. Patients will be recruited through a previous large-scale survey of unselected people with inflammatory bowel disease. The UK Inflammatory Bowel Disease Questionnaire and global rating of symptom relief at 6 months are the co-primary outcomes, with multiple secondary outcomes measured also at 6 and 12 months post randomisation to assess maintenance. The RCT has an embedded pilot study, health economics evaluation and process evaluation. We will randomise 680 patients, 340 in each group. Demographic characteristics and outcome measures will be presented for both study groups at baseline. The UK-IBDQ and global rating of symptom relief at 6 and 12 months post randomisation will be compared between the study groups. Discussion The BOOST online self-management programme for people with IBD-related symptoms of fatigue, pain and urgency has been designed to be easily scalable and implemented. If it is shown to improve patients’ quality of life, this trial will enable clinicians and patients to make informed management decisions. This is the first trial, to our knowledge, focused on multiple symptoms prioritised by both people with IBD and health professionals. Trial registration ISRCTN71618461. Registered on 9 September 2019.

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