9 research outputs found
Personalised adherence support for maintenance treatment of inflammatory bowel disease: A tailored digital intervention to change adherence-related beliefs and barriers
BACKGROUND AND AIMS: Interventions to improve adherence to medication may be more effective if tailored to the individual, addressing adherence-related beliefs about treatment and overcoming practical barriers to daily use. We evaluated whether an algorithm, tailoring support to address perceptual and practical barriers to adherence, reduced barriers and was acceptable to patients with inflammatory bowel disease [IBD]. METHODS: Participants with IBD, prescribed azathioprine and/or mesalazine, were recruited via patient groups, social media, and hospital clinics and allocated to Intervention or Control Groups. The online intervention comprised messages tailored to address beliefs about IBD and maintenance treatment and to provide advice on overcoming practical difficulties with taking regular medication. The content was personalised to address specific perceptual and practical barriers identified by a pre-screening tool. Validated questionnaires assessed barriers to adherence and related secondary outcomes at baseline and at 1 and 3 months of follow-up. RESULTS: A total of 329 participants were allocated to the Intervention [n = 153] and Control [n = 176] Groups; just under half [46.2%] completed follow-up. At 1 and 3 months, the Intervention Group had significantly fewer concerns about IBD medication [p â€0.01]; and at three months, fewer doubts about treatment necessity, fewer reported practical barriers, and higher reported adherence [p <0.05]. Relative to controls at follow-up, the Intervention Group were more satisfied with information about IBD medicines, and viewed pharmaceuticals in general more positively. Questionnaires, interviews, and intervention usage indicated that the intervention was acceptable. CONCLUSIONS: Personalised adherence support using a digital algorithm can help patients overcome perceptual barriers [doubts about treatment necessity and medication concerns] and practical barriers to adherence
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Inflammatory bowel disease psychological support pilot reduces inflammatory bowel disease symptoms and improves psychological wellbeing
This prospective service evaluation aimed to determine if integrated psychological support for Inflammatory Bowel Disease (IBD) patients enhanced outcomes. 75 patients were assessed and treated by a specialist liaison psychiatric service between 2015 -2017; 43 received psychiatric intervention alone, 32 were referred for psychological intervention by clinical health psychologist; 26 completed this. Pre-post data (n=15 available) included: Global impression, quality of life, psychiatric and IBD symptom scores. Referrer/patient satisfaction and cost effectiveness were retrospectively calculated. Psychological intervention led to reductions in IBD symptoms (SIBD; p=0.003), alongside improvements in depression scores (PHQ-9, p=0.006) and global impression (CGI; p=0.046). Patient/referrer satisfaction was very high. Indicative data comparing service utilisation one year before and after engagement found reductions in outpatient appointments and in imaging. This small study suggests consideration of increased access to integrated psychological support services to improve outcomes and gather further evidence of efficacy
Inflammatory bowel disease patientâreported quality assessment should drive service improvement: A national survey of UK IBD units and patients
© 2022 The Authors. Published by Wiley. This is an open access article available under a Creative Commons licence. The published version can be accessed at the following link on the publisherâs website: https://doi.org/10.1111/apt.17042Background & Aims
Healthcare service provision in inflammatory bowel disease (IBD) is often designed to meet targets set by healthcare providers rather than those of patients. It is unclear whether this meets the needs of patients, as assessed by patients themselves. This nationwide study assessed patients' experience of IBD and the healthcare they received, aiming to identify factors in IBD healthcare provision associated with perceived high-quality care.
Methods
Using the 2019 IBD Standards as a framework, a national benchmarking tool for quality assessment in IBD was developed by IBD UK, comprising a Patient Survey and Service Self-Assessment.
Results
In all, 134 IBD services and 9757 patients responded. Perceived quality of care was lowest in young adults then increased with age, was higher in males and those >2âyears since diagnosis. No hospital services met all the National IBD Standards for recommended workforce numbers. Key metrics associated with patient-reported high-quality care were as follows: identification as a tertiary centre, patient information availability, shared decision-making, rapid response to contact for advice, access to urgent review, joint medical/surgical clinics and access to research (all p <â0.001). Higher numbers of IBD nurse specialists in a service was strongly associated with patients receiving regular reviews and having confidence in self-management and reporting high-quality care.
Conclusions
This extensive patient and healthcare provider survey emphasises the importance of aspects of care less often measured by clinicians, such as communication, shared decision-making and provision of information, and demonstrates that IBD nurse specialists are crucial to meeting the needs of people living with IBD.This work was supported by Crohn's & Colitis UK.Published onlin
Antibiotic Prescribing Patterns in Ghana, Uganda, Zambia and Tanzania Hospitals: Results from the Global Point Prevalence Survey (G-PPS) on Antimicrobial Use and Stewardship Interventions Implemented
Antimicrobial resistance (AMR) remains an important global public health issue with antimicrobial misuse and overuse being one of the main drivers. The Global Point Prevalence Survey (G-PPS) of Antimicrobial Consumption and Resistance assesses the prevalence and the quality of antimicrobial prescriptions across hospitals globally. G-PPS was carried out at 17 hospitals across Ghana, Uganda, Zambia and Tanzania. The overall prevalence of antimicrobial use was 50% (30â57%), with most antibiotics prescribed belonging to the WHO âAccessâ and âWatchâ categories. No âReserveâ category of antibiotics was prescribed across the study sites while antimicrobials belonging to the âNot Recommendedâ group were prescribed infrequently. Antimicrobials were most often prescribed for prophylaxis for obstetric or gynaecological surgery, making up between 12 and 18% of total prescriptions across all countries. The most prescribed therapeutic subgroup of antimicrobials was âAntibacterials for systemic useâ. As a result of the programme, PPS data are now readily available for the first time in the hospitals, strengthening the global commitment to improved antimicrobial surveillance. Antimicrobial stewardship interventions developed included the formation of AMS committees, the provision of training and the preparation of new AMS guidelines. Other common interventions included the presentation of findings to clinicians for increased awareness, and the promotion of a multi-disciplinary approach to successful AMS programmes. Repeat PPS would be necessary to continually monitor the impact of interventions implemented. Broader participation is also encouraged to strengthen the evidence base
Bi-allelic Loss-of-Function CACNA1B Mutations in Progressive Epilepsy-Dyskinesia.
The occurrence of non-epileptic hyperkinetic movements in the context of developmental epileptic encephalopathies is an increasingly recognized phenomenon. Identification of causative mutations provides an important insight into common pathogenic mechanisms that cause both seizures and abnormal motor control. We report bi-allelic loss-of-function CACNA1B variants in six children from three unrelated families whose affected members present with a complex and progressive neurological syndrome. All affected individuals presented with epileptic encephalopathy, severe neurodevelopmental delay (often with regression), and a hyperkinetic movement disorder. Additional neurological features included postnatal microcephaly and hypotonia. Five children died in childhood or adolescence (mean age of death: 9 years), mainly as a result of secondary respiratory complications. CACNA1B encodes the pore-forming subunit of the pre-synaptic neuronal voltage-gated calcium channel Cav2.2/N-type, crucial for SNARE-mediated neurotransmission, particularly in the early postnatal period. Bi-allelic loss-of-function variants in CACNA1B are predicted to cause disruption of Ca2+ influx, leading to impaired synaptic neurotransmission. The resultant effect on neuronal function is likely to be important in the development of involuntary movements and epilepsy. Overall, our findings provide further evidence for the key role of Cav2.2 in normal human neurodevelopment.MAK is funded by an NIHR Research Professorship and receives funding from the Wellcome Trust, Great Ormond Street Children's Hospital Charity, and Rosetrees Trust. E.M. received funding from the Rosetrees Trust (CD-A53) and Great Ormond Street Hospital Children's Charity. K.G. received funding from Temple Street Foundation. A.M. is funded by Great Ormond Street Hospital, the National Institute for Health Research (NIHR), and Biomedical Research Centre. F.L.R. and D.G. are funded by Cambridge Biomedical Research Centre. K.C. and A.S.J. are funded by NIHR Bioresource for Rare Diseases. The DDD Study presents independent research commissioned by the Health Innovation Challenge Fund (grant number HICF-1009-003), a parallel funding partnership between the Wellcome Trust and the Department of Health, and the Wellcome Trust Sanger Institute (grant number WT098051). We acknowledge support from the UK Department of Health via the NIHR comprehensive Biomedical Research Centre award to Guy's and St. Thomas' National Health Service (NHS) Foundation Trust in partnership with King's College London. This research was also supported by the NIHR Great Ormond Street Hospital Biomedical Research Centre. J.H.C. is in receipt of an NIHR Senior Investigator Award. The research team acknowledges the support of the NIHR through the Comprehensive Clinical Research Network. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, Department of Health, or Wellcome Trust. E.R.M. acknowledges support from NIHR Cambridge Biomedical Research Centre, an NIHR Senior Investigator Award, and the University of Cambridge has received salary support in respect of E.R.M. from the NHS in the East of England through the Clinical Academic Reserve. I.E.S. is supported by the National Health and Medical Research Council of Australia (Program Grant and Practitioner Fellowship)