Using a learning health system to understand the mismatch between medicines supply and actual medicines use among adults with cystic fibrosis.

BACKGROUND: Studies in separate cohorts suggest possible discrepancies between inhaled medicines supplied (median 50-60%) and medicines used (median 30-40%). We performed the first study that directly compares CF medicine supply against use to identify the cost of excess medicines supply. METHODS: This cross-sectional study included participants from 12 UK adult centres with ≥1 year of continuous adherence data from data-logging nebulisers. Medicine supply was measured as medication possession ratio (MPR) for a 1-year period from the first suitable supply date. Medicine use was measured as electronic data capture (EDC) adherence over the same period. The cost of excess medicines was calculated as whole excess box(es) supplied after accounting for the discrepancy between EDC adherence and MPR with 20% contingency. RESULTS: Among 275 participants, 133 (48.4%) were females and mean age was 30 years (95% CI 29-31 years). Median EDC adherence was 57% (IQR 23-86%), median MPR was 74% (IQR 46-96%) and the discrepancy between measures was median 14% (IQR 2-29%). Even with 20% contingency, mean potential cost of excess medicines was £1,124 (95% CI £855-1,394), ranging from £183 (95% CI £29-338) for EDC adherence ≥80% to £2,017 (95% CI £1,507-2,526) for EDC adherence <50%. CONCLUSIONS: This study provides a conservative estimate of excess inhaled medicines supply cost among adults with CF in the UK. The excess supply cost was highest among those with lowest EDC adherence, highlighting the importance of adherence support and supplying medicine according to actual use. MPR provides information about medicine supply but over-estimates actual medicine use.

The Cost Effectiveness of Maintenance Schedules Following Pulmonary Rehabilitation in Patients with Chronic Obstructive Pulmonary Disease: An Economic Evaluation Alongside a Randomised Controlled Trial.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) affects approximately 3 million people in the UK. An 8-week pulmonary rehabilitation (PR) course is recommended under current guidelines. However, studies show that initial benefits diminish over time. OBJECTIVE: We present here an economic evaluation conducted alongside a randomised controlled trial (RCT) of a low-intensity maintenance programme over a time horizon of 1 year delivered in UK primary and secondary care settings. METHODS: Patients with COPD who completed at least 60 % of a standard 8-week PR programme were randomised to a 2-h maintenance session at 3, 6 and 9 months (n = 73) or treatment as usual (n = 75). Outcomes were change in Chronic Respiratory Questionnaire (CRQ) score, EQ-5D-based QALYs, cost (price year 2014) to the UK NHS and social services over the 12 months following initial PR, and incremental cost-effectiveness ratios (ICERs). RESULTS: At 12 months, incremental cost to the NHS and social services was -£204.04 (95 % CI -£1522 to £1114). Incremental CRQ and QALY gains were -0.007 (-0.461 to 0.447) and +0.015 (-0.050 to 0.079), respectively. Based on point estimates, PR maintenance therefore dominates treatment as usual from the perspective of the NHS and social services in terms of cost per QALY gained. Whether it is cost effective in terms of CRQ depends on whether the £204 per patient could be reinvested elsewhere to a CRQ gain of greater than 0.007. However, there is much decision uncertainty: 95 % CIs around increments did not exclude zero, and there is a 72.9 % (72.5 %) probability that the ICER is below £20,000 (£30,000) per QALY. CONCLUSION: Future research should explore whether more intensive maintenance regimens offer benefit to patients at reasonable cost.

The effects of maintenance schedules following pulmonary rehabilitation in patients with chronic obstructive pulmonary disease: a randomised controlled trial.

OBJECTIVES: Pulmonary rehabilitation (PR) provides benefit for patients with chronic obstructive pulmonary disease (COPD) in terms of quality of life (QoL) and exercise capacity; however, the effects diminish over time. Our aim was to evaluate a maintenance programme for patients who had completed PR. SETTING: Primary and secondary care PR programmes in Norfolk. PARTICIPANTS: 148 patients with COPD who had completed at least 60% of a standard PR programme were randomised and data are available for 110 patients. Patients had greater than 20 pack year smoking history and less than 80% predicted forced expiratory volume in 1 s but no other significant disease or recent respiratory tract infection. INTERVENTIONS: Patients were randomised to receive a maintenance programme or standard care. The maintenance programme consisted of 2 h (1 h individually tailored exercise training and 1 h education programme) every 3 months for 1 year. PRIMARY AND SECONDARY OUTCOME MEASURES: The Chronic Respiratory Questionnaire (CRQ) (primary outcome), endurance shuttle walk test (ESWT), EuroQol (EQ5D), hospital anxiety and depression score (HADS), body mass index (BMI), body fat, activity levels (overall score and activity diary) and exacerbations were assessed before and after 12 months. RESULTS: There was no statistically significant difference between the groups for the change in CRQ dyspnoea score (primary end point) at 12 months which amounted to 0.19 (-0.26 to 0.64) units or other domains of the CRQ. There was no difference in the ESWT duration (-10.06 (-191.16 to 171.03) seconds), BMI, body fat, EQ5D, MET-minutes, activity rating, HADS, exacerbations or admissions. CONCLUSIONS: A maintenance programme of three monthly 2 h sessions does not improve outcomes in patients with COPD after 12 months. We do not recommend that our maintenance programme is adopted. Other methods of sustaining the benefits of PR are required. TRIAL REGISTRATION NUMBER: NCT00925171.

Barriers to pulmonary rehabilitation: characteristics that predict patient attendance and adherence.

BACKGROUND: Pulmonary rehabilitation (PR) is efficacious in chronic obstructive pulmonary disease (COPD). As completion rates of PR are poor, we wished to assess predictors of attendance and adherence. METHODS: We performed a retrospective analysis of 711 patients with COPD, who were invited to attend PR. Data were compared to allow predictors (gender, smoking status, attending partner, referral route, employment status, body mass index, forced expiratory volume in 1 s (FEV(1)), oxygen therapy (LTOT), oxygen saturations, chronic respiratory questionnaire (CRQ), shuttle walk distance, travel distance and time) of attendance (0 or >0 attendance) and adherence (< or >63% attendance) to be identified. RESULTS: 31.8% of patients referred for PR did not attend and a further 29.1% were non-adherent. Predictors of non-attendance were female gender, current smoker, and living alone. Predictors of non-adherence were extremes of age, current smoking, LTOT use, FEV(1), CRQ score and travelling distance. Multiple logistic regression revealed that LTOT and living alone were independent predictors of poor attendance and current smoking, poor shuttle walking distance and hospitalisations were independent predictors of poor adherence. CONCLUSION: Smoking status, availability of social support and markers of disease severity were predictors of attendance and adherence to PR.