P209 Personalised data-Linkage Understanding Treatment Optimisation (PLUTO) in the CFHealthHub Learning Health System: understanding how much is enough for normal life expectancy in the post-modulator era

R.D. Sandler,Zhe Hui Hoo, M.J. Wildman

Journal of Cystic Fibrosis(2023)

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摘要
Since starting CFTR modulators (CFTRm), people with CF are using less preventative inhaled therapy and the effect of this on prognosis is uncertain. CFTRm use, with an FEV1 decline ≤1% per year may offer people with CF the chance of a normal life expectancy. This opportunity may be squandered by reducing nebuliser use. Personalised data-Linkage Understanding Treatment Optimisation (PLUTO) helps people with CF to understand how much inhaled treatment is enough for them. We use CFHealthHub to structure pre-clinic meetings to pay attention to FEV1 decline, BMI trend, adherence to CFTRm and adherence to preventative inhaled therapy. The PLUTO structure identifies people with an annual FEV1 decline of >1% and explores how, by using CFHealthHub adherence data, we can support them to achieve a ≤1% annual decline. Results: For Person 1 and 2, despite differing adherence to inhaled therapy, the achievement of a <1% FEV1 decline suggests their current adherence to inhaled therapy is enough. Persons 3 and 4 have a >1% FEV1 decline. Person 3’s FEV1 decline might be attributed to 30% adherence to inhaled therapy and CFHealthHub intervention has the potential to increase adherence, which may reverse FEV1 decline. Person 4’s FEV1 is declining despite 100% adherence prompting the clinical team to look for new pathology, such as allergic bronchopulmonary aspergillosis or nontuberculous mycobacteria infection. For Person 5, both FEV1 and BMI are decreasing with 0% adherence to inhaled therapyand unsatisfactory adherence to CFTRm. They require attention around both CFTRm and nebuliser adherence (likely starting with CFTRm adherence). Annual FEV1 decline >1% can identify patients where current management is likely to fail to deliver a normal life expectancy. PLUTO offers a structured assessment that pays attention to objective adherence data using CFHealthHub to understand how much treatment is enough for each individual person with CF.
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关键词
cfhealthhub learning cfhealthhub system,data-linkage,post-modulator
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