ObjectivesA measure used for assessing the effectiveness of HIV care and comparing clinical centres is the proportion of people starting antiretroviral therapy (ART) with viral suppression (VS) after 1 year. We propose a method that adjusts for patients’ demographic characteristics, and visually compares this measure between different sites accounting for centre size.MethodsWe analysed viral load measurements for UK Collaborative HIV Cohort (UK CHIC) patients starting ART between 2006 and 2013. We used logistic regression to estimate the proportion with VS after 1 year of ART adjusted for patient mix (in terms of age and a combined gender/ethnicity/acquisition mode variable) and calendar year. We compared outcomes between centres using funnel plots which account for centre size.ResultsThe overall proportion of the cohort with VS 1 year after starting ART was 90% and increased from 83% to 93% between 2006 and 2013. VS was lower in younger individuals. White men who have sex with men (MSM) had the highest (94%), and black African (81%) and white (82%) heterosexual women the lowest proportions achieving VS. Comparing the unadjusted funnel plot with the adjusted, there were movements of some centres from outside to inside the 95% contour limits, which was largely explained by the patient mix of these centres.Conclusions VS 1 year after ART start was associated with demographic characteristics and centre size; therefore, to compare the performances of centres, adjustment for these factors is required. Adjusted funnel plot is an effective tool which accounts for both the demographic characteristics and the centre size. Social factors, rather than treatment decisions within the control of the centres, may drive differences in outcomes.
Results Nine children (six girls) had received Nusinersen since June 2017. They had a median (range) age of 22 (9-89) months. The median (range) number of Nusinersen doses was 5 (4-6). Seven children receive BiPAP and one child is ventilated via tracheostomy. The total number of days in hospital since diagnosis was 665 with median (range) hospital days of 64 (4-177) days. This included HDU 52 (4-116) days and PICU 4 (0-103) days. This equates to each child spending a mean of 32% of their life on HDU/PICU. Three spent £2% of their life in hospital, three 30%-60% and three>60%. Conclusion Patients with SMA1 treated with Nusinersen are likely to spend at least a third of their early life in hospital and parents should be counselled accordingly. Treatment with Nusinersen is costly, not only because of the cost of the drug, but because of significant health care utilisation, including time spent receiving critical care.
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