Requirements and access needs of patients with chronic disease to their hospital electronic health record: results of a cross-sectional questionnaire survey

Objectives: To identify patient’s views on the functionality required for personalised access to the secondary care EHR and their priorities for development. Design: Quantitative analysis of a cross-sectional self-complete survey of patient views on required EHR functionality from a secondary care EHR, including a patient ranking of functionality. Setting: Secondary care patients attending a regional cystic fibrosis unit in the north of England Participants: 201 adults [106 (52.7%) male], median age 29 years (range 17-58 years) entered and completed the study. Inclusion criteria; a confirmed diagnosis of CF, aged 16 years and over, at a time of clinical stability Outcome measures: Quantitative responses within 4 themes; 1) value placed on aspects of the EHR; 2) access requirements to functions of the EHR; 3) views on information sent to the EHR 4) patient feedback entered into the EHR. A ranked score for 15 functions of the EHR was obtained Results: Highest ratings (% reporting item as very important/important) were reported for access to clinical measures [lung function (94%), CRP (84%), sputum microbiology (81%) and blood results (80%)], medication changes (82%) and lists (83%) and sending repeat prescription (83%) and treatment requests (80%), whilst sending symptom diaries was less so (62%). Email contact with clinicians was the most valuable communication element of the EHR (84% very important/important). Of 15 features of the EHR [1=most desirable to 15=least desirable) patients identified ‘clinical measures’ [2.62 (CI 2.07-3.06)], and ‘access to medication lists’ [4.91 (CI 4.47-5.44)], as highest priority for development and the ability to comment on errors/ommissions [11.0 (CI 10.6-11.5)] or experience of care [11.8 (CI 11.4-12.2)] as lowest. Conclusions: Patients want extensive personal access to their hospital EHR, placing high importance on the viewing of practical clinical measures and medication management. These influence routine day to day care and are priorities for developmen

Survival of Mycobacterium abscessus isolated from people with CF in artificially generated aerosols

M. abscessus survives aerosolisation suggesting airborne transmission between people with CF may occu

Variation in lung function as a marker of adherence to oral and inhaled medication in cystic fibrosis

Study aim: The aim of this study was to characterise adherence in an adult population with CF and to investigate if variation in lung function was a predictor of adherence to treatment. Patients and methods: Patients aged ≥ 16 years from an adult CF centre undertook adherence measures by medication possession ratio (MPR) and self-report and were assigned to one of three adherence categories (<50%, 50-<80%, 80% and above) by their composite score (MPR). Ordinal regression was used to identify predictors of adherence including coefficient variation measures for forced expiratory volume in 1 second (FEV1), weight and C-reactive protein, measured up to 6 and 12 months. Results: MPR data for 106 of 249 patients [mean age 29.8 (±9.2) years] was retrieved, indicating a mean adherence of 63%. Coefficient of variation FEV1 was inversely related to adherence and was a univariate predictor of adherence (6 months: 0.92 [0.87-0.98] p= 0.005 and 12 months: 0.94 [0.93-0.99], p=0.03]) and remained significant in the final models. The coefficient variation of weight and C-reactive protein were not predictive of adherence. Conclusions: Coefficient of variation FEV1 was identified as an objective predictor of adherence. Further evaluation of this potential marker of adherence is now required

Urinary bicarbonate and metabolic alkalosis during exacerbations in cystic fibrosis

The aetiology of increased serum bicarbonate and metabolic alkalosis in CF is complex and appears to be driven, at least in part, by renal tubular CFTR dysfunction https://bit.ly/3NFPkU