K. Pollard

Accurate Assessment of Adherence: Self-Report and Clinician Report vs Electronic Monitoring of Nebulizers

BACKGROUND People with cystic fibrosis have a high treatment burden. While uncertainty remains about individual patient level of adherence to medication, treatment regimens are difficult to tailor, and interventions are difficult to evaluate. Self- and clinician-reported measures are routinely used despite criticism that they overestimate adherence. This study assessed agreement between rates of adherence to prescribed nebulizer treatments when measured by self-report, clinician report, and electronic monitoring suitable for long-term use. METHODS Seventy-eight adults with cystic fibrosis were questioned about their adherence to prescribed nebulizer treatments over the previous 3 months. Self-report was compared with clinician report and stored adherence data downloaded from the I-Neb nebulizer system. Adherence measures were expressed as a percentage of the prescribed regimen, bias was estimated by the paired difference in mean (95% CI) patient and clinician reported and actual adherence. Agreement between adherence measures was calculated using intraclass correlation coefficients (95% CI), and disagreements for individuals were displayed using Bland-Altman plots. RESULTS Patient-identified prescriptions matched the medical record prescription. Median self-reported adherence was 80% (interquartile range, 60%-95%), whereas median adherence measured by nebulizer download was 36% (interquartile range, 5%-84.5%). Nine participants overmedicated and underreported adherence. Median clinician report ranged from 50% to 60%, depending on profession. Extensive discrepancies between self-report and clinician report compared with nebulizer download were identified for individuals. CONCLUSIONS Self- and clinician-reporting of adherence does not provide accurate measurement of adherence when compared with electronic monitoring. Using inaccurate measures has implications for treatment burden, clinician prescribing practices, cost, and accuracy of trial data.

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.

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.

116 Effect of nebulised antibiotics on Aspergillus colonisation and complications

Nebulised antibiotics are associated with increased Aspergillus colonisation. It is not known whether this effect leads to increased Aspergillus antibodies or more frequent use of anti-fungal medication. Recent in-vitro data also suggests that colomycin may have fungicidal properties. We reviewed 129 adult patients classified as chronically colonised with Pseudomonas. Patients were receiving either long-term nebulised colomycin, nebulised tobramycin, or no antibiotic (Table 1). Patients not receiving nebulised antibiotics had lower Aspergillus positivity in sputum (p = 0.003) and lower specific Aspergillus IgE levels (p = 0.001). There was a trend to lower total IgE and use of anti-fungal medication. No significant differences were seen between the colomycin and tobramycin groups aside from the colomycin group received less anti-fungal medication (p = 0.03).

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

273 Relationship between self-reported adherence, medication collections and clinical variation in cystic fibrosis

270 Evaluation of parents’ compliance in the treatment of cystic fibrosis children N. Rohovyk1,2, L. Bober3, H. Makukh4, M. Rohovyk1. 1Danylo Halytsky Lviv National Medical University, Lviv, Ukraine; 2Western Ukrainian Specialized Children’s Medical Centre and Cystic Fibrosis Regional Centre, Lviv, Ukraine; 3Western Ukrainian Specialized Children’s Medical Centre and Cystic Fibrosis regional centre, Lviv, Ukraine; 4Institute of Hereditary Pathology of National Academy of Medical Sciences of Ukraine, Lviv, Ukraine