Search

Background: Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia). However, to date, sample sizes within completed research are small and study designs heterogeneous, and therefore, little is known about the lived experiences of dysphagia among people with fibromyalgia. To go some way towards addressing this gap in the literature, this study collected and analysed the first‐hand experiences of the physical symptoms, the psychosocial impacts and environmental factors that influenced the lived experience of a sample of people living with fibromyalgia‐associated dysphagia. Methods: Qualitative semi‐structured interviews were conducted with adults with dysphagia and fibromyalgia. Reflexive thematic analysis was employed and themes were identified regarding the reported experience and impact of swallowing problems. The same researcher conducted the interviews and extracted all data, and a second researcher analysed a random sample of 5% of the data for accuracy, with no disagreements arising between the two researchers. Results: All participants (n = 8) reported the negative psychosocial impact of their dysphagia. Participants reported managing their dysphagia independently, primarily using compensatory strategies. Participants discussed feeling unsupported in healthcare interactions due to clinicians not understanding the occurrence, nature or impact of eating, drinking and swallowing difficulties. Participants also reported that they did not have access to evidence‐based management strategies that adequately addressed their fibromyalgia‐related swallowing problems. Conclusions: Despite minimal previous research in this area, findings here highlight the impact that dysphagia has on people with fibromyalgia. A broad range of physical symptoms were reported to have negative consequences across both social and emotional domains. The reported symptoms often required complex coping strategies and sometimes impeded participants from seeking suitable medical intervention from healthcare providers. There are both broad‐ranging implications of fibromyalgia‐associated dysphagia and reported poor perceptions of medical interactions for this cohort of patients. Therefore, there is evidently a need for clinical research into the management of this condition to develop patient‐centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group. Patient or Public Contribution: Before initiation of the qualitative interviews, the interview schedule was piloted with an individual living with fibromyalgia and dysphagia, with feedback provided on the appropriate wording and format of semi‐structured questioning. [ABSTRACT FROM AUTHOR]

Background In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. Methods A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. Results The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. Conclusion Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills. [ABSTRACT FROM AUTHOR]

Objective: To describe age and time at key stages in the Duchenne muscular dystrophy (DMD) prediagnosis pathway at selected centres to identify opportunities for service improvement.Design: A multicentre retrospective national audit.Setting: Nine tertiary neuromuscular centres across the UK and Ireland. A prior single-centre UK audit of 20 patients with no DMD family history provided benchmark criteria.Patients: Patients with a definitive diagnosis of DMD documented within 3 years prior to December 2018 (n=122).Main Outcome Measures: Mean age (months) at four key stages in the DMD diagnostic pathway and mean time (months) of presentational and diagnostic delay, and time from first reported symptoms to definitive diagnosis. Type of symptoms was also recorded.Results: Overall, mean age at definitive diagnosis, age at first engagement with healthcare professional (HCP) and age at first reported symptoms were 53.9±29.7, 49.9±28.9 and 36.4±26.8 months, respectively. The presentational delay and time to diagnosis were 21.1 (±21.1) and 4.6 (±7.9) months, respectively. The mean time from first reported symptoms to definitive diagnosis was 24.2±20.9. The percentages of patients with motor and/or non-motor symptoms recorded were 88% (n=106/121) and 47% (n=57/121), respectively.Conclusions: Majority of data mirrored the benchmark audit. However, while the time to diagnosis was shorter, a presentational delay was observed. Failure to recognise early symptoms of DMD could be a contributing factor and represents an unmet need in the diagnosis pathway. Methods determining how to improve this need to be explored. [ABSTRACT FROM AUTHOR]

Background: Bacteraemia data are often used as a general measure of resistance prevalence but may poorly represent other infection types. We compared resistance prevalence between bloodstream infection (BSI) and lower respiratory tract infection (LRTI) isolates collected by the BSAC Resistance Surveillance Programme.Methods: BSI isolates (n = 8912) were collected during 2014-18 inclusive and LRTI isolates (n = 6280) between October 2013 to September 2018 from participating laboratories in the UK and Ireland, to a fixed annual quota per species group. LRTI isolates, but not BSI, were selected by onset: community for Streptococcus pneumoniae; hospital for Staphylococcus aureus, Pseudomonas aeruginosa and Enterobacterales. MICs were determined centrally by agar dilution; statistical modelling adjusted for ICU location and possible clustering by collection centre.Results: Resistance was more prevalent among the LRTI isolates, even after adjusting for a larger proportion of ICU patients. LRTI P. aeruginosa and S. pneumoniae were more often resistant than BSI isolates for most antibiotics, and the proportion of MRSA was higher in LRTI. For S. pneumoniae, the observation reflected different serotype distributions in LRTI and BSI. Relationships between LRTI and resistance were less marked for Enterobacterales, but LRTI E. coli were more often resistant to β-lactams, particularly penicillin/β-lactamase inhibitor combinations, and LRTI K. pneumoniae to piperacillin/tazobactam. For E. cloacae there was a weak association between LRTI, production of AmpC enzymes and cephalosporin resistance.Conclusions: Estimates of resistance prevalence based upon bloodstream isolates underestimate the extent of the problem in respiratory isolates, particularly for P. aeruginosa, S. pneumoniae, S. aureus and, less so, for Enterobacterales. [ABSTRACT FROM AUTHOR]