Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials

Davies, Gwyneth; Rowbotham, Nicola J.; Smith, Sherie; Elliot, Zoe C; Gathercole, Katie; Rayner, Oli; Leighton, Paul; Herbert, Sophie; Duff, A.J.A.; Chandran, Suja; Daniels, T.; Nash, Edward F.; Smyth, Alan

doi:10.1016/j.jcf.2019.10.025

Cited by 71 publications

(71 citation statements)

References 8 publications

(10 reference statements)

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“…The current study confirms our previous work which showed that treatment burden in CF is high and patients, their families and HCPs recognise this as a barrier to adherence. 5 Patients described the relentlessness of the condition and identified that additional competing demands, such as from school and work, were barriers to adherence. Related themes were having no time (including time for preparation and cleaning of equipment) and tiredness.…”

Section: Discussionmentioning

confidence: 99%

“…In this study and in our previous work we highlight that the most burdensome treatments identified by patients were the most likely to be omitted. 5 However, other research has suggested that there is not always a clear relationship between objective treatment burden and adherence. This was demonstrated by Ball et al who found that teenagers with CF were most adherent to treatment during school-term weekdays, despite this being a time when there were many competing demands.…”

Section: Discussionmentioning

confidence: 99%

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The Impact of the China-Pakistan Economic Corridor on Pakistan’s Federal System

Boni

Adeney

2020

Asian Survey

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The China-Pakistan Economic Corridor is often portrayed as the flagship project of the Belt and Road Initiative. While much attention has been devoted to its geopolitical repercussions, its impacts on Pakistan’s federal system and interprovincial relations have not yet been explored. Organized around interviews conducted in 2015, 2018, and 2019, this article demonstrates that the construction of the economic corridor is acting as a centripetal force in Pakistan’s federal structure, despite the potential for such a large external investment to redress the disparities between provinces.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

The Impact of the China-Pakistan Economic Corridor on Pakistan’s Federal System

Boni

Adeney

2020

Asian Survey

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“…This study addresses top research priorities identified by people with CF, their families, carers and clinical teams as part of the James Lind Alliance CF Priority Setting Partnership. 4 The ACT sensor and gaming were developed as part of the BBC2 programme, 'The Big Life Fix' at the request of a family with two sons who have CF. 11 This idea was developed further by the study team, which includes a parent of children with CF, physiotherapy specialists and product design specialists.…”

Section: Patient and Public Involvementmentioning

confidence: 99%

“…3 People with CF undertake a median of 10 different concurrent treatments that take an average of 2 hours each day. 4 This high daily treatment burden (and high cost of care) from childhood has become a driver for research to maximise effective care and minimise unnecessary therapies. Reducing treatment burden has been identified as the top CF research priority by the James Lind Alliance.…”

Section: Introductionmentioning

confidence: 99%

“…Of those questioned, 70% said they regularly missed some of their daily treatments, most commonly avoiding ACTs or nebulised therapies. 4 Another study found those with the lowest adherence to chest physiotherapy had worse lung function, more exacerbations and consequently had higher health costs. 6 Another of the James Lind Alliance top 10 research priorities for CF is to identify the specific therapies that could delay and prevent the progression of lung disease in early life.…”

Section: Introductionmentioning

confidence: 99%

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Protocol for Project Fizzyo, an analytic longitudinal observational cohort study of physiotherapy for children and young people with cystic fibrosis, with interrupted time-series design

et al. 2020

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IntroductionDaily physiotherapy is believed to mitigate the progression of cystic fibrosis (CF) lung disease. However, physiotherapy airway clearance techniques (ACTs) are burdensome and the evidence guiding practice remains weak. This paper describes the protocol for Project Fizzyo, which uses innovative technology and analysis methods to remotely capture longitudinal daily data from physiotherapy treatments to measure adherence and prospectively evaluate associations with clinical outcomes.Methods and analysisA cohort of 145 children and young people with CF aged 6–16 years were recruited. Each participant will record their usual physiotherapy sessions daily for 16 months, using remote monitoring sensors: (1) a bespoke ACT sensor, inserted into their usual ACT device and (2) a Fitbit Alta HR activity tracker. Real-time breath pressure during ACTs, and heart rate and daily step counts (Fitbit) are synced using specific software applications. An interrupted time-series design will facilitate evaluation of ACT interventions (feedback and ACT-driven gaming). Baseline, mid and endpoint assessments of spirometry, exercise capacity and quality of life and longitudinal clinical record data will also be collected.This large dataset will be analysed in R using big data analytics approaches. Distinct ACT and physical activity adherence profiles will be identified, using cluster analysis to define groups of individuals based on measured characteristics and any relationships to clinical profiles assessed. Changes in adherence to physiotherapy over time or in relation to ACT interventions will be quantified and evaluated in relation to clinical outcomes.Ethics and disseminationEthical approval for this study (IRAS: 228625) was granted by the London-Brighton and Sussex NREC (18/LO/1038). Findings will be disseminated via peer-reviewed publications, at conferences and via CF clinical networks. The statistical code will be published in the Fizzyo GitHub repository and the dataset stored in the Great Ormond Street Hospital Digital Research Environment.Trial registration numberISRCTN51624752; Pre-results.

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Airway clearance techniques compared to no airway clearance techniques for cystic fibrosis

Warnock

Gates

2023

Cochrane Database of Systematic Reviews

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Characterising burden of treatment in cystic fibrosis to identify priority areas for clinical trials

Cited by 71 publications

References 8 publications

The Impact of the China-Pakistan Economic Corridor on Pakistan’s Federal System

The Impact of the China-Pakistan Economic Corridor on Pakistan’s Federal System

Protocol for Project Fizzyo, an analytic longitudinal observational cohort study of physiotherapy for children and young people with cystic fibrosis, with interrupted time-series design

Airway clearance techniques compared to no airway clearance techniques for cystic fibrosis

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