Andrew Robinson

Patients' attitudes to medicines and adherence to maintenance treatment in inflammatory bowel disease

Background: Nonadherence has been reported in over 40% of patients taking maintenance therapies (MT) for inflammatory bowel disease (IBD). Studies in other illness groups have shown that nonadherence is related to negative attitudes to treatment. The aim of this study was to assess patients attitudes to MT for IBD (beliefs about personal need for MT and potential adverse effects) and to identify whether such beliefs are associated with adherence to MT. Methods: A cross‐sectional survey was conducted in which 1871 members of the National Association for Colitis and Crohns Disease (NACC) completed validated questionnaires assessing beliefs about MT and adherence to MT. Results: Low adherence to MT was reported by 29% of participants and was associated with doubts about personal need for MT (odds ratio [OR] = 0.56; 95% confidence interval [CI]: 0.48–0.64; P < 0.001) and concerns about potential adverse effects (OR = 1.66; 95% CI: 1.42–1.94; P < 0.001). Attitudinal analysis showed that while almost half (48%) of the participants were “accepting” of MT (high necessity, low concerns), a large proportion of the sample (42%) were “ambivalent” about MT (high necessity, high concerns), 6% were “sceptical” (low necessity, high concerns) and 4% were “indifferent” (low necessity, low concerns). Compared to those who were “accepting” of MT, participants in all 3 other attitudinal groups were significantly more likely to be nonadherent. Conclusions: The way in which patients judge their personal need for MT relative to their concerns about MT can be a significant barrier to adherence. Interventions to facilitate optimal adherence to MT for IBD should address such perceptual barriers.

Factors Associated With Non-Adherence to Oral Medication for Inflammatory Bowel Disease: A Systematic Review

OBJECTIVES:Adherence is generally associated with improved treatment outcomes. Risk factors for non-adherence must be understood to improve adherence. A systematic review was undertaken to determine which variables were consistently associated with non-adherence to oral medication in inflammatory bowel disease (IBD).METHODS:The databases EMBASE, Medline, and PsycINFO were searched for titles relating to adherence, medication, and IBD (1980–2008). Primary, quantitative studies were included if they concerned adult patients with IBD, measured adherence to oral medication, and measured characteristics associated with adherence. The resulting 17 papers were independently reviewed by two researchers who also assessed their quality according to pre-defined criteria. The main outcome was the frequency with which demographic, clinical, treatment, and psychosocial variables were found to be statistically significantly associated with non-adherence.RESULTS:Non-adherence rates ranged from 7 to 72%, with most studies reporting that 30–45% of patients were non-adherent. No demographic, clinical, or treatment variables were consistently associated with non-adherence. Psychological distress and patients’ beliefs about medications were both related to non-adherence in four out of five studies, and doctor–patient discordance was associated with non-adherence in two out of three studies.CONCLUSIONS:This is the largest review of factors associated with non-adherence in IBD. Demographic, clinical, and treatment variables were not consistently associated with non-adherence. Psychological distress, patients’ beliefs about medications, and doctor–patient discordance were associated with non-adherence. These findings call into question some of the conclusions of earlier reviews that did not take into account nonsignificant findings. Practical suggestions for gastroenterologists and future research are discussed.

Incorporating patients' views and experiences of life with IBS in the development of an evidence based self-help guidebook

To become active partners in chronic illness management, patients need relevant information which clearly explains treatment choices. This paper describes a method of producing information to feed into production of a guidebook for people with irritable bowel syndrome (IBS). Users were involved throughout the development process. Five focus groups were held involving 23 people with IBS out of 147 who responded to a newspaper article asking for help with a study of self-care in IBS. Qualitative analysis of transcripts from these meetings formed the basis of guidebook development. Patients described their experiences, coping strategies, experiences of the healthcare system, treatments and social consequences of the condition. Medical literature searches were made to find answers to identified areas of information need. The book includes direct quotes from patients describing their own experiences. Guided and practical ways of support are required for people with IBS who want to self-manage their condition.

Analysis of the hexanucleotide repeat in C9ORF72 in Alzheimer's disease.

Frontotemporal lobar degeneration (FTLD) is a highly familial neurodegenerative disease. It has recently been shown that the most common genetic cause of FTLD and amyotrophic lateral sclerosis (ALS) is a hexanucleotide repeat expansion in C9ORF72. To investigate whether this expansion was specific to the FTLD/ALS disease spectrum, we genotyped the hexanucleotide repeat region of C9ORF72 in a large cohort of patients with Alzheimers disease (AD). A normal range of repeats was found in all cases. We conclude that the hexanucleotide repeat expansion is specific to the FTLD/ALS disease spectrum.

Patients' experiences of an open access follow up arrangement in managing inflammatory bowel disease.

Background: Improving access is a key policy issue in improving quality of care and extending patient choice and participation. People’s experience of changing from fixed outpatient appointments to more flexible direct access arrangements for chronic disease has been underexplored. Objectives: To examine patients’ views on using an open system of access compared with fixed outpatient appointments as part of a guided self-management intervention for inflammatory bowel disease (IBD). Design: Embedded qualitative study undertaken alongside a randomised controlled trial. Semi-structured interviews were undertaken to obtain an in depth understanding of patients’ experience of the change in access arrangements. Participants: A purposive sample (nu200a=u200a30) was drawn from the intervention group (nu200a=u200a700) according to a range of responses to the trial baseline and follow up quantitative measures. Results: 28 interviews were included in the analysis. Compared with the previous system of fixed appointments, preference for the new open access system was based on enhanced personal control in contacting services and the view that it fitted better with everyday routine management and the requirement for urgent medical contact when symptoms fail to respond to medication. Preference for retaining fixed appointments was based on a sense of security from gaining access which did not require the individual to initiate the request for medical help. Conclusions: Open access may fit better with patients’ self-management of their condition and everyday routines, roles and responsibilities. Ensuring that outpatient organisational arrangements and personnel are responsive to patient initiated requests for appointments is likely to impact on the acceptability of this type of access arrangement. Some people may continue to prefer the fixed appointment system which should be retained if patient choice is to be respected.

Conveying medication benefits to ulcerative colitis patients and effects on patient attitudes regarding thresholds for adherence

BACKGROUND AND AIMnAdherence to medication that maintains remission by patients with ulcerative colitis (UC) is poor but little is known regarding patients perception of medication benefit that may enhance adherence rates. The aims were to study patients understanding and preference on methods of conveying statistical information and to study indicated thresholds for adherence to medication for UC.nnnMETHODSnFour methods of displaying information on benefits of maintenance therapy were explained to patients with UC in remission: relative risk reduction [RR], absolute risk reduction [AR], number needed to treat [NNT] and optical representation via Cates plot [CP]. Patients understanding and preference for each method were evaluated. Participants were asked to state minimum thresholds relating to relapse prevention and colorectal cancer risk reduction that they would require in order for them to adhere to medication for UC.nnnRESULTSnOf 50 participants, 48% preferred data presentation by RR over CP (28%), AR (20%) and NNT (4%). 94% found RR easy to understand, better than AR (88%), CP (74%), or NNT (48%). For bowel cancer prevention, 94% indicated adherence for benefit levels of 61% RR but only 57% for the corresponding CP (P<0.001). For relapse prevention, 78% of patients indicated adherence for benefit levels of 40% RR but only 43% for the corresponding CP (P<0.001).nnnCONCLUSIONnPatients with UC prefer data presented by RR, and apply significantly higher thresholds for adherence when presented with CP compared to RR. Reduction of cancer risk may be a stronger motivator than maintenance of remission.

OC-082 The Development of a Web-Based System to Enhance Care in Inflammatory Bowel Disease

Introduction Engaging and empowering patients to have greater involvement in their care is central to the vision of many governmental health policies. It is widely recognised that facilitating self-management for patients by providing information to help support understanding, decision-making and motivating behavioural change can lead to significant improved health outcomes.1 We describe the development of a web-based IBD system that specifically aims to support patients’ in taking a more active role in managing their IBD. Methods Design and implementation of a web-based system in the healthcare setting is complex with a number of human, technological and organisational factors that need to be considered from the start of the concept. Stakeholder involvement is essential throughout this process. Using the theoretical framework of self-efficacy we have designed a system with the specific aim to support patients to engage in their health. Our aim has been to develop a web-based system that is easily managed and sustainable for use in routine clinical practise. Results ‘My IBD Portal’ has now been implemented. The web-based system is accessed via a secure login and provides patients with a number of components. This includes a summary of their disease, clinic letters and their latest test results. Functions known to further enhance self-management are included with electronic self-monitoring of symptoms and decision support. Secure messaging with the IBD unit is provided. Throughout the site personalised and trusted information links are integrated. The system is automated to populate the specific data fields each day from the hospital electronic medical record. The infrastructure of the system, has been specifically designed to be easily adopted throughout the UK healthcare setting. Conclusion Design and implementation of patient-focused ehealth within the NHS is complex. Stakeholder involvement is essential. Evaluation of web-based interventions requires careful consideration, as they are often complex interventions by nature. The revised MRC framework provides a useful resource to develop a systematic process to evaluate such technologies.2 We are currently evaluating the impact of ‘My IBD Portal’ in a formal trial setting. Abstract OC-082 Figure Disclosure of Interest None Declared References De Silva et al. Evidence:Helping people help themselves. The Health Foundation 2011. http://www.health.org.uk Anderson et al. New MRC guidance on complex interventions. 2008. BMJ; 338:a1937