H. White

Nutritional decline in cystic fibrosis related diabetes: The effect of intensive nutritional intervention

BACKGROUND Reports indicate that nutritional and respiratory decline occur up to four years prior to diagnosis of cystic fibrosis related diabetes (CFRD). Our aim was to establish whether intensive nutritional intervention prevents pre-diabetic nutritional decline in an adult population with CFRD. METHODS 48 adult patients with CFRD were matched to 48 controls with CF, for age, gender and lung pathogen status. Nutritional and other clinical indices were recorded at annual intervals from six years before until two years after diagnosis. Data were also analysed to examine the impact of early and late acquisition of CFRD. RESULTS No important differences in weight, height, body mass index (BMI), lung function or intravenous treatment were found between groups in the six years prior to diagnosis, nor any significant deviation over time. In those who developed diabetes, use of overnight enteral tube feeding (ETF) was four times as likely at the time of diagnosis, compared to controls [ETF 43.8% (CFRD) v 18.8% (CF Controls), OR 4.0, CI 1.3 to 16.4, p=0.01]. Age at onset of CFRD played a significant role in determining the pre-diabetic clinical course. Younger diabetics with continued growth at study onset (n=17) had a lower BMI from 2 years prior to diagnosis compared to controls [BMI 18.9 kg/m(2) (CFRD) v 20.8 kg/m(2) (CF Controls), diff=1.9, CI -0.1 to 3.7 p=0.04]. The BMI of older diabetics (completed growth at study onset) was equal to that of controls throughout. CONCLUSION Pre-diabetic nutritional decline is not inevitable in adults with CFRD, but is influenced by age of onset. In the group overall, those with CFRD are more likely to require ETF from 2 years prior to diagnosis. Despite intensive nutritional intervention, patients who continue to grow throughout the pre-diabetic years, show a level of nutritional decline absent in older adults.

Enteral tube feeding in adults with cystic fibrosis; patient choice and impact on long term outcomes.

BACKGROUND Enteral tube feeding (ETF) has been evaluated in paediatric and mixed child and adult populations with cystic fibrosis, demonstrating positive outcomes from 6 months to 2 years post insertion. No studies have examined the longer term nutritional and clinical outcomes in an exclusively adult population with cystic fibrosis or compared the outcomes for those who meet standard criteria and opt to undertake or decline ETF. METHODS Twenty three out of 380 patients attending the Leeds Regional Adult CF unit fulfilled the standard criteria for commencing ETF (CF Trust, 2002) between 2004 and 2008. Weight, BMI, FEV1, FVC, CFRD, and number of intravenous antibiotic treatment days were collected at 1 year pre baseline, at baseline, and at 1, 2, and 3 years post baseline for all these patients whether they accepted or declined ETF. RESULTS Seventeen of the 23 patients agreed to accept a programme of ETF, two of whom died within the first year of ETF. In the remaining patients (n=15), weight increased by 19.5% from baseline (p<0.001), BMI increased to within the normal range and lung function stabilised. There was no reduction in the requirement for intravenous antibiotic treatment. The six patients who declined ETF had a decline in lung function and no weight gain. CONCLUSION Supplemental enteral tube feeding improves clinical outcomes when administered over 3 years, resulting in significant weight gain, a normal BMI and stabilisation of lung function. It does not reduce intravenous antibiotic treatment days. In contrast those patients eligible for, but who declined ETF, showed a deterioration in lung function and a failure to gain weight and to achieve normal BMI status.

The development and deployment of integrated electronic care records in a regional adult and paediatric cystic fibrosis unit

BACKGROUND Electronic care records (ECRs) for cystic fibrosis (CF) provide a basis for accurate, reliable capture of clinical measures and interventions, and epidemiological trends, providing the basis for improved efficiency and patient safety. METHODS A primary care system was modified for hospital use and clinical codes devised for all aspects of CF care. Performance and usability were assessed. RESULTS Of a total of 620 patients 619 consented to their data being recorded in the system. Five hundred and twenty three new codes were created and embedded behind 60 new templates. Following introduction of ECR, completion of annual assessments increased from 43% to 92%, retrieval of drug costs rose significantly and time to correspondence with primary care fell from 34days to <2days. Staff satisfaction was high. CONCLUSION The system is fully operational allowing the unit to function as a paperless service. Efficiencies of staffing activity, process management and cost retrievals are evident. Sharing of coding structures is important in future care.

Enteral feeding pumps: efficacy, safety, and patient acceptability

Enteral feeding is a long established practice across pediatric and adult populations, to enhance nutritional intake and prevent malnutrition. Despite recognition of the importance of nutrition within the modern health agenda, evaluation of the efficacy of how such feeds are delivered is more limited. The accuracy, safety, and consistency with which enteral feed pump systems dispense nutritional formulae are important determinants of their use and acceptability. Enteral feed pump safety has received increased interest in recent years as enteral pumps are used across hospital and home settings. Four areas of enteral feed pump safety have emerged: the consistent and accurate delivery of formula; the minimization of errors associated with tube misconnection; the impact of continuous feed delivery itself (via an enteral feed pump); and the chemical composition of the casing used in enteral feed pump manufacture. The daily use of pumps in delivery of enteral feeds in a home setting predominantly falls to the hands of parents and caregivers. Their understanding of the use and function of their pump is necessary to ensure appropriate, safe, and accurate delivery of enteral nutrition; their experience with this is important in informing clinicians and manufacturers of the emerging needs and requirements of this diverse patient population. The review highlights current practice and areas of concern and establishes our current knowledge in this field.

Research in progress—electronic patient records: a new era

Clinical information systems and electronic records are starting to appear in secondary care and herald new potentials for improving health provision and capturing high quality data. In 2006, we set up a program to develop electronic patient records (EPR) for chronic disease using Cystic Fibrosis (CF) as our initial model. Seven years on we are now exploring the real time clinical data to identify risks, trends and outcomes in chronic disease management. We are also working to establish new models of integration and to connect information between the client and all areas of health care.

212 Impact of enteral tube feeding on body fat and lean body mass

Objectives: Enteral tube feeding (ETF) has known benefits, improving weight and stabilising lung function in adult patients with CF. The aim of this study was to examine how weight gain is achieved through measurement of fat deposition before and after initiation of ETF. Methods: 6 patients fulfilled the study criteria, having undergone measurement of body composition [DEXA] 1 year prior to staring ETF and up to 18 months post ETF. Percentage change in weight (kg), body fat (%), lean body mass (kg), gynoid fat (%) and android fat (%) were recorded. Results: 6 patients [3M/3F], aged 17.7–33.0 years were eligible to participate. Body mass index at start ETF was 14.7–24.8 kg/m2. Fat deposition in the year after enteral feeding achieved up to 340% increase. Android (central fat) deposition was consistently greater than gynoid fat. 50% of cases had a reduction in lean body mass after start of enteral tube feeding, despite only one case displaying weight loss over this period.

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 patients views on the functionality required for personalised access to the secondary care electronic health record (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%) males), median age 29 years (range 17–58 years), entered and completed the study. Inclusion criteria are as follows: a confirmed diagnosis of cystic fibrosis, aged 16 years and over, at the 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 and (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%), C reactive protein (84%), sputum microbiology (81%) and blood results (80%)), medication changes (82%) and lists (83%) and sending repeat prescription (83%) and treatment requests (80%), while 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 to 3.06)), and ‘access to medication lists’ (4.91 (CI 4.47 to 5.44)), as highest priority for development and the ability to comment on errors/omissions (11.0 (CI 10.6 to 11.5)) or experience of care (11.8 (CI 11.4 to 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 development.

WS10.6 Objective predictors of self-report of adherence in adults with cystic fibrosis

Objective: Self-reported adherence overestimates true adherence and is 14% above pharmacy script collection in our population. Our aim was to investigate the presence of objective measures which could predict self reported adherence. Methods: Patients completed a self-report of adherence (CFQ-R). They were subsequently classified into one of 3 categories: low ( 80%) according to a mean of their score from the CFQ-R adherence score and confirmation against prescribed medications. Coefficient of variation (CoV) for FEV1, weight and CRP were each calculated from all clinical contacts within the previous year. Age, gender, microbial status, disease severity, medication, respiratory and anthropometric measures were collected at baseline. Ordinal regression was used to determine the contribution of objective variables to adherence. Results: 249 patients [age 29.7(±9.2) yrs, 58.6% (M)] completed the study. Regression analysis revealed that FEV1 CoV [OR = 0.95; CI: 0.92-0.98, p=0.006], number of types of medication [OR = 1.18; CI: 1.11-1.26, p<0.001], and age [OR = 1.03; CI: 1.01 to 1.06, p=0.026] together explained 19% of the variance in the model, classified as having good fit. Banding status, gender, microbial status, genotype, CoV weight, and Cov CRP did not predict adherence. Conclusion: Although adherence is complex in aetiology, we have shown that 3 objective measures can predict almost 20% of the model. The odds of being in a higher adherence category increase for every year of age , each 1% reduction in CoV FEV1, and each additional medication.

The impact of three discharge coding methods on the accuracy of diagnostic coding and hospital reimbursement for inpatient medical care

BACKGROUND Coding of diagnoses is important for patient care, hospital management and research. However coding accuracy is often poor and may reflect methods of coding. This study investigates the impact of three alternative coding methods on the inaccuracy of diagnosis codes and hospital reimbursement. METHODS Comparisons of coding inaccuracy were made between a list of coded diagnoses obtained by a coder using (i)the discharge summary alone, (ii)case notes and discharge summary, and (iii)discharge summary with the addition of medical input. For each method, inaccuracy was determined for the primary, secondary diagnoses, Healthcare Resource Group (HRG) and estimated hospital reimbursement. These data were then compared with a gold standard derived by a consultant and coder. RESULTS 107 consecutive patient discharges were analysed. Inaccuracy of diagnosis codes was highest when a coder used the discharge summary alone, and decreased significantly when the coder used the case notes (70% vs 58% respectively, p < 0.0001) or coded from the discharge summary with medical support (70% vs 60% respectively, p < 0.0001). When compared with the gold standard, the percentage of incorrect HRGs was 42% for discharge summary alone, 31% for coding with case notes, and 35% for coding with medical support. The three coding methods resulted in an annual estimated loss of hospital remuneration of between £1.8 M and £16.5 M. CONCLUSION The accuracy of diagnosis codes and percentage of correct HRGs improved when coders used either case notes or medical support in addition to the discharge summary. Further emphasis needs to be placed on improving the standard of information recorded in discharge summaries.

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

The aim of this study was to characterise adherence in an adult population with cystic fibrosis (CF) and to investigate if variation in lung function was a predictor of adherence to treatment. The adherence of patients aged ≥16 years from an adult CF centre was measured by medication possession ratio (MPR) and self-report. Patients were assigned to one of three adherence categories (<50%, 50 to <80%, ≥80%) by their composite score (MPR). Ordinal regression was used to identify predictors of adherence, including coefficient variation measures for forced expiratory volume in 1 s (FEV1), weight and C-reactive protein concentration, measured from 6 months and 12 months before baseline. MPR data for 106 of 249 patients (mean age 29.8±9.2 years) was retrieved, indicating a mean adherence of 63%. The coefficient of variation for FEV1 was inversely related to adherence and was a univariate predictor of adherence (6 months: OR 0.92, 95% CI 0.87–0.98, p=0.005; 12 months: OR 0.94, 95% CI 0.93–0.99, p=0.03) and remained significant in the final models. The coefficient of variation of weight and C-reactive protein were not predictive of adherence. The coefficient of variation of FEV1 was identified as an objective predictor of adherence. Further evaluation of this potential marker of adherence is now required. The coefficient of variation of FEV1 is a significant objective predictor of adherence in cystic fibrosis http://ow.ly/kcrb307S2T3