‘Training Day’ – Learning from CF patients最新文献

{"title":"P71 Remote respiratory sampling and unusual Pseudomonas growths in adults with cystic fibrosis: Is there a link?","authors":"K. Ur Rehman, M. Tausan, N. Ramadan, I. Felton, E. Ukor, S. Madge, A. Jones, N. Simmonds","doi":"10.1136/thorax-2022-btsabstracts.207","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.207","url":null,"abstract":"P71 Table 1 2019 cohort n=20 2021 cohort n=46 p value* Remote samples 0 (0) 31 (67.4) - Age – years, mean (SD) 36.90 (9.65) 36.98 (13.25) NS Sex – Female n (%) 14 (70) 28 (60.9) NS F508del/F508del mutation n (%) 6 (30) 19 (41) NS Maintenance inhaled antibiotic therapy n (%) 13 (65) 27 (58.7) NS CFTR modulator therapy n (%) 7 (35) 40 (87) <0.001 Unusual Pseudomonas species (n) Pseudomonas putida (4)Pseudomonas fluorescens (4)Pseudomonas rhodesiae (2)Pseudomonas synxantha (2)Other (8) Pseudomonas putida (12)Pseudomonas fluorescens (11)PseudomonasMonteilii (4)Pseudomonas libanensis (3)Pseudomonas proteolytica (3)Other (13) <0.001(See text) Clinical intervention n (%)Patient symptomatic and new therapy prescribedPatient well and no action takenPatient well and new therapy prescribedNew long-term prophylaxis initiatedIncomplete data 5 (25)3 (15)7 (35)0 (0)5 (25) 10 (21.7%)15 (32.6)8 (17.4)4 (8.7)13 (28.2) NSNSNSNSNS Regrowth of unusual Pseudomonas species on subsequent samples n (%) 1 (5) 2 (4.3) NS *Tests performed = Mann Whitney Test for processing time,t test for mean age, Chi square for ratios (Yates’ correction where data size less than 5). NS=not significantConclusionDespite nearly 50% reduction in respiratory sampling (likely a result of Covid19 and the introduction of the CFTR modulator ‘Kaftrio’), our study demonstrated more than a 2-fold increase in growths of unusual Pseudomonas species in 2021. We found an association with longer processing times, which were more common with remote sampling. Mechanisms underlying this, such as contamination, require further investigation. Importantly, our data suggest that growths may be transient and treatment not always indicated. Our results suggest caution should be exercised when interpreting samples with long processing times, but further prospective studies are required.","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130092828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P67 Moving into year 7: A pilot study to assess to the usefulness of an on-line group session to prepare young people with cystic fibrosis for transitioning to secondary school","authors":"G. Beech, C. Lawrence, A. Walsh, H. Fogg, C. Woodland, R. Thursfield","doi":"10.1136/thorax-2022-btsabstracts.203","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.203","url":null,"abstract":"IntroductionStarting secondary school is a big step for any child and their family but particularly so if they have a chronic condition such as cystic fibrosis (CF). Hospital teams can assist with the preparation required for the transition. CF is different from other chronic conditions with respect to holding transition events, as face to face events are not possible due to the risk of cross-infection of different organisms between patients. In order to overcome this, the CF team at Alder Hey Children’s Hospital created a virtual event named ‘MI7’ (Moving Into year 7).MethodEvents were held via video conferencing software and questionnaires sent to all participants before the event and afterwards. All patients in year 6 cared for by the Alder Hey CF network were invited to participate with a maximum of 7 young people per group. Packs were sent out beforehand. Sessions consisted of ice-breaker games and CF team led discissions.ResultsA pilot event was held in 2019. This was well-received and follow-up from the families was sought after the first term at secondary school. Unfortunately, due to the COVID pandemic, the event could not be held in 2020, but it went ahead in 2021 and 2022.There was a distinct difference between the event held in 2019 and 2021/22, in that everyone (the hospital team members, and the patients and their families) was much more familiar with participating in a virtual event, due to the way this practice had become commonplace during the COVID pandemic.Overall 22 people have participated in these events to date. 25% described being worried about going to secondary school. All young people gave at least one thing that they were worried about and the most common finding was getting lost (21%). The most common CF related worry was regarding taking creon and 12% cited this as a concern. Less than 25% of all concerns given related to CF with the remainder being more generic concerns.All participants stated that they enjoyed the event and most found it useful.ConclusionTransition events to help this patient population move from primary to secondary school are feasible, enjoyable for young people with CF and useful.","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"17 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134124702","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P64 Using the CFHealthHub learning health system to understand the experiences of adults with cystic fibrosis of obtaining repeat supplies of nebulised medicines: results of a national survey","authors":"A. Bevan, S. Dawson, J. Hall, I. Davids, C. Girling, E. Cross, M. Wildman","doi":"10.1136/thorax-2022-btsabstracts.200","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.200","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"46 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125021330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P62 A discrete choice experiment (DCE) to quantify the influence of trial features on the decision to participate in Cystic Fibrosis (CF) trials","authors":"R. Dobra, JC Davies, J. Elborn, F. Kee, S. Madge, M. Boeri","doi":"10.1136/thorax-2022-btsabstracts.198","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.198","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"19 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122516681","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P73 A prospective multifaceted evaluation of the impact of Kaftrio in children with cystic fibrosis","authors":"H. Gajaweera, M. Day, G. Connett, C. Cannell, J. Legg","doi":"10.1136/thorax-2022-btsabstracts.209","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.209","url":null,"abstract":"P73 Table 1Results from questionnaires. Median values reported.*only assessed in CFQ-R for subjects over 14 years of age (n=12)Type Domain Pre Post P value Median CFQ-R (n=16) Physical 87.5 95.83 0.116 Emotion 68.75 80 0.124 Eat 100 100 0.57 Treatment 72.17 66.67 0.346 Social 66.67 71.83 0.532 Body 88.89 88.89 0.811 Respiratory 83.33 93.06 0.006 Digestive 83.34 94.45 0.107 Role* 83.33 91.67 0.084 Weight* 83.34 100 0.131 Vitality* 58.33 66.67 0.833 Health* 66.67 83.34 0.082 Median PEI-Q(n=16) Abdominal symptom score (A) 0.93 0.71 0.38 Bowel movement score (B) 0.25 0 0.119 Total symptom score 0.58 0.405 0.018 Impacts (C) 0 0 0.564 Total summary score 0.375 0.27 0.02 Median WEMWBS(n=16) 50 51 0.895 ConclusionThe assessment tools used in this study usefully identified improvements in gastrointestinal and respiratory symptoms. The lack of change in indices of mental well-being is probably a result of relatively good mental health in this age group prior to CFTR modulator treatment and may have been influenced by the impact of the COVID pandemic during which this study was conducted.","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"62 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"122045834","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P65 Are patients with cystic fibrosis attending a virtual leisure centre representative of the cystic fibrosis population?","authors":"Y. Qin, A. Johnson, K. Hamana, J. Duckers, C. Bridges, N. Gale","doi":"10.1136/thorax-2022-btsabstracts.201","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.201","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"164 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115314017","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P66 Patient-reported outcomes in patients with cystic fibrosis with homozygous for the Phe508del CFTR mutation on lumacaftor-ivacaftor treatment: results from an observational study","authors":"P. Arooj, D. Morrissy, N. Ronan, Y. Mccarthy, C. Fleming, J. Eustace, D. Murphy, B. Plant","doi":"10.1136/thorax-2022-btsabstracts.202","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.202","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"124 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128077910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P63 Levelling the playing field: improving access to cystic fibrosis clinical trials for a large, regional population. Lessons learned from the London network of the UK clinical trials accelerator platform","authors":"D. Brown, J. Davies, R. Dobra, J. Matthews","doi":"10.1136/thorax-2022-btsabstracts.199","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.199","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"79 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115651438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P69 The impact of elexacaftor-tezacaftor-ivacaftor (ETI, Kaftrio) treatment on the opinions of children and young people with cystic fibrosis about physiotherapy and nebulised treatment: a qualitative study","authors":"M. Almulhem, C. Ward, N. Harnett, S. Graham, S. Visram, M. Brodlie","doi":"10.1136/thorax-2022-btsabstracts.205","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.205","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"17 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121986575","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"P68 Changing demographics of the cystic fibrosis population with ageing – how will this impact future provision of care?","authors":"K. Sapru, R. Bright-Thomas, S. Patterson, P. Barry, A. Jones","doi":"10.1136/thorax-2022-btsabstracts.204","DOIUrl":"https://doi.org/10.1136/thorax-2022-btsabstracts.204","url":null,"abstract":"","PeriodicalId":174868,"journal":{"name":"‘Training Day’ – Learning from CF patients","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131890665","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}