CFHealthHub Publications
CFHealthHub has an on-going research programme committed to improving patient outcomes and quality of care. The list below is a non-exhaustive list of publications. Some of the publications explore important issues in quality improvement (QI) in CF, such as the use of Registry data to identify high quality care, and the importance of pseudomonas status in allowing ‘apples with apples’ comparisons. In addition, there are studies exploring metrics such as normative adherence that underpin the NICE indicator.
Journal publications
Key publications
Real-World Adherence Among Adults With Cystic Fibrosis Is Low A Retrospective Analysis of the CFHealthHub Digital Learning Health System
Hoo Z, Tutton N, Waterhouse S, et al
Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis
Dawson S, Girling CJ, Cowap L, et al
Modelling Successful Self-Management in Adults With Cystic Fibrosis: Vicarious Self-Efficacy From Videos of ‘People Like Me’
Hutchings M, Kirkpatrick S, Arden M et al
Effectiveness of a self-management intervention to support treatment adherence in adults with cystic fibrosis: a randomised controlled trial
Wildman MJ, for the CFHealthHub study team
Pediatr Pulmonol 2020;55(S2):S265-S266
CFHealthHub: The development of a digital intervention to provide feedback on objective nebuliser adherence data for adults with cystic fibrosis (CF)
Arden, MA, Drabble SJ, O'Cathain A, et al
Front Public Health 2017. doi: 10.3389/conf.FPUBH.2017.03.00081
Applying the theoretical domains framework to adherence to nebuliser treatment in adults with cystic fibrosis
Arden MA, Drabble SJ, O’Cathain A, et al
Eur Health Psychol 2016
Easy Medicines for Burden Reduction and Care Enhancement (EMBRACE) – medicines optimisation
Using a digital learning health system to investigate the relationship between medication possession ratio and objective medicines use, and implications for medicines waste in cystic fibrosis – the Easy Medicines for Burden Reduction And Care Enhancement (EMBRACE) study.
Bevan A, Hoo ZH, Totton N, et al.
J Cyst Fibros. 2022;21(2):323-331
Quality Improvement using CFHealthHub
Understanding FEV1 for the purpose of cystic fibrosis registry comparisons: Does bias in annual review FEV1 affect between-centre comparison within the UK? An analysis of registry data
Hoo ZH, Campbell MJ, Walters SJ, et al
J Eval Clin Pract 2020;26:229-235
Making the invisible visible: the availability and desirability of adherence data in routine CF care- findings from a national questionnaire survey
Robinson L, Maguire C, Hoo ZH, et al.
F1000Res 2019;8:1904
The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV1 in the UK only collected when subjects are well?
Hoo ZH, Curley R, Campbell MJ, et al.
J Eval Clin Pract. 2018;24:745-751
Pragmatic criteria to define chronic pseudomonas aeruginosa infection among adults with cystic fibrosis
Hoo ZH, Coates E, Maguire C, et al.
Eur J Clin Microbiol Infect Dis 2018;37:2219-2222
Understanding Pseudomonas status among adults with cystic fibrosis: a real-world comparison of the Leeds criteria against clinicians’ decision.
Hoo ZH, Edenborough FP, Curley R, et al.
Eur J Clin Microbiol Infect Dis 2018;37:735-743
CFHealthHub intervention/trial and behavioural science
Development and evaluation of an intervention to support Adherence to treatment in adults with Cystic Fibrosis: The ACtiF Research Programme
Wildman MJ, O’Cathain A, Hind D, et al
Programme Grants Appl Res. 2021 Jan 5; In press
Development of an intervention to increase adherence to nebuliser treatment in adults with cystic fibrosis: CFHealthHub
Arden MA, Hutchings M, Whelan P, et al
Pilot Feasibility Stud 2021;7:1
Mechanisms of Action of a Web-Based Intervention With Health Professional Support to Increase Adherence to Nebulizer Treatments in Adults With Cystic Fibrosis: Qualitative Interview Study
Drabble SJ, O'Cathain A, Scott AJ, et al
J Med Internet Res 2020;22:e16782
Feasibility study for supporting medication adherence for adults with cystic fibrosis: mixed-methods process evaluation
Hind D, Drabble SJ, Arden MA, et al
BMJ Open 2020;10:e039089
Investigating the Temporal Relationships between Symptoms and Nebuliser Adherence in People with Cystic Fibrosis: A Series of N-of-1 Observations
Martin R, Arden M, Porritt J, et al
Healthcare (Basel) 2020;8:22
Adherence to medication in adults with Cystic Fibrosis: An investigation using objective adherence data and the Theoretical Domains Framework
Arden MA, Drabble S, O'Cathain A, et al
Br J Health Psychol 2019;24:357-380
Understanding patient activation and adherence to nebuliser treatment in adults with cystic fibrosis: responses to the UK version of PAM-13 and a think aloud study
Gao J, Arden M, Hoo ZH, et al
BMC Health Serv Res 2019;19:420
When is forgetting not forgetting? A discursive analysis of differences in forgetting talk between adults with cystic fibrosis with different levels of adherence to nebulizer treatments
Drabble SJ, O'Cathain A, Arden MA, et al
Qual Health Res 2019;29:2119-2131
Supporting medication adherence for adults with cystic fibrosis: a randomised feasibility study
Hind D, Drabble SJ, Arden MA, et al
BMC Pulm Med 2019;19:77
Role of habit in treatment adherence among adults with cystic fibrosis
Hoo ZH, Gardner B, Arden MA, et al
Thorax 2019;74:197-199
A pragmatic behavior-based habit index for adherence to nebulized treatments among adults with cystic fibrosis
Hoo ZH, Wildman MJ, Campbell MJ, et al
Patient Prefer Adherence 2019;13:283-294
Rescue vs prevention in CF care
The impact of COVID-19 shielding on the wellbeing, mental health and treatment adherence of adults with cystic fibrosis
Westcott KA, Wilkins F, Chancellor A
Future Healthc J 2021;8:1-3
Exploring the implications of different approaches to estimate centre-level adherence using objective adherence data in an adult cystic fibrosis centre – a retrospective observational study
Hoo ZH, Curley R, Walters SJ, et al
J Cyst Fibros 2020;19:162-167
Intravenous antibiotic use and exacerbation events in an adult cystic fibrosis centre: A prospective observational study
Hoo ZH, Bramley NR, Curley R, et al
Respir Med 2019;154:109-115
Do cystic fibrosis centres with the lowest FEV1 still use the least amount of intravenous antibiotics? A registry-based comparison of intravenous antibiotic use among adult CF centres in the UK
Hoo ZH, Campbell MJ, Curley R, et al
J Cyst Fibros 2018;17:360-367
Rescue therapy within the UK Cystic Fibrosis Registry: An exploration of predictors of intravenous antibiotic use amongst adults with CF
Hoo ZH, Wildman MJ, Curley R, et al
Respirology 2018;23:190-197
An Early Health Economic Analysis of the Potential Cost Effectiveness of an Adherence Intervention to Improve Outcomes for Patients with Cystic Fibrosis
Tappenden P, Sadler S, Wildman M
Pharmacoeconomics 2017;35:647-659
An empirical method to cluster objective nebulizer adherence data among adults with cystic fibrosis
Hoo ZH, Campbell MJ, Curley R, et al
Patient Prefer Adherence 2017;11:631-642
Accurate reporting of adherence to inhaled therapies in adults with cystic fibrosis: methods to calculate “normative adherence”
Hoo ZH, Curley R, Campbell MJ, et al
Patient Prefer Adherence 2016;10:887-900
Cost-effectiveness of a complex adherence intervention to improve prevention in cystic fibrosis by empowering effective self-management: an exploratory health economic evaluation using UK Registry data
Sadler S, Wildman M, Tappenden P
J Cyst Fibros 2016;15:S119–20
Promoting adherence to nebulized therapy in cystic fibrosis: poster development and a qualitative exploration of adherence
Jones S, Babiker N, Gardner E, et al
Patient Prefer Adherence 2015;9:1109-1120
Conference abstracts
Easy Medicines for Burden Reduction and Care Enhancement (EMBRACE) – medicines optimisation
Easy Medicines for Burden Reduction and Care Enhancement: using real time adherence data to optimise inhaled therapies in adults with cystic fibrosis. The UK National EMBRACE programme
Bevan A, Tahir M, Miller B et al. (2020)
J Cyst Fibros 2020;19(Suppl 2):S150
Patient and Public Involvement (PPI)
Using a 1500-patient learning health system (LHS) to support virtual clinics and medicines optimisation: A UK seven-centre Patient and Public Involvement (PPI) project to understand user experience
Dawson S, Carolan C, Daniels T, et al
Submitted 2021
Exploring the views of UK people with cystic fibrosis who are “difficult to reach”: a six-centre patient and public involvement project.
Dawson S, Arden MA, Walton E, et al
Pediatr Pulmonol 2020;55(S2):S338-S339
A personal reflection on being a co-applicant in the ACtiF study
Beever DA, Wildman MJ
Res Involv Engagem 2017; 3(Suppl 1):P26
CFHealthHub intervention/trial and behavioural science
Effectiveness of a self-management intervention to support treatment adherence in adults with cystic fibrosis: a randomised controlled trial
Wildman MJ, for the CFHealthHub study team
Pediatr Pulmonol 2020;55(S2):S265-S266
CFHealthHub: The development of a digital intervention to provide feedback on objective nebuliser adherence data for adults with cystic fibrosis (CF)
Arden, MA, Drabble SJ, O'Cathain A, et al
Front Public Health 2017. doi: 10.3389/conf.FPUBH.2017.03.00081
Understanding nebuliser adherence in adults with Cystic Fibrosis: comparing high, medium and low adherers
Arden MA, M. Hutchings M, Whelan P, et al
Eur Health Psychol 2017
CFHealthHub: complex intervention to support adherence to treatment in adults with cystic fibrosis: external pilot trial
Hind D, Maguire C, Cantrill H, et al
J Cyst Fibros 2017;16(Suppl 1):S40
368 CFHealthHub: development and evaluation of videos incorporating peer description of successful self-management with inhaled therapies in adults with CF used to build self-efficacy to support self-care within the CFHealthHub complex intervention
Kirkpatrick S, Arden MA, Beever DA, et al
J Cyst Fibros 2017;16(Suppl 1):S155
Applying the theoretical domains framework to adherence to nebuliser treatment in adults with cystic fibrosis
Arden MA, Drabble SJ, O’Cathain A, et al
Eur Health Psychol 2016
ACtiF study: understanding adherence to nebuliser treatment in adults with cystic fibrosis using the Theoretical Domains Framework
Arden MA, Drabble SJ, O’Cathain A, et al
J Cyst Fibros 2016;15(Suppl 1):S26
Rescue vs prevention in CF care
Quantifying the ‘under-served’ or ‘hard to reach but reachable’ people with CF in two UK adult CF centres
Dawson S, Carolan C, Lowther M, et al
Submitted 2021
Estimating adherence with nebulised therapies: a challenge for people with cystic fibrosis and healthcare professionals
Warnock L, Faulkner J, Flight WG
J Cyst Fibros 2020;19(Suppl 2):S147
Nobody left behind: the UK national equity indicator using real time data from the CFHealthHub digital learning health system to understand the reach of self-care support across adult centres
Wildman MJ, Totton NV, Hoo ZH
Pediatr Pulmonol 2020;55(S2):S319
Developing an implementation strategy for the use of objective adherence data in routine clinical practice: a case study in cystic fibrosis clinics
Girling C, Hind D, Arden MA, et al
Implement Sci 2019;14(Suppl 2):P9
Exploring different methods to display centre-level data in the UK CF Registry annual report
Hoo ZH, Walters SJ, Campbell MJ, et al
Pediatr Pulmonol 2017;52(S47):S404
Real world evidence of sustained improvement in objective adherence to maintenance inhaled therapies in an adult cystic fibrosis centre
Hoo ZH, Curley R, Walters SJ, et al
Pediatr Pulmonol 2017;52(S47):S488
Cluster analysis of objective nebuliser adherence data among adults with CF: change in adherence over time and association with clinical outcomes
Hoo ZH, Curley RE, Campbell SMJ, et al
J Cyst Fibros 2017;16(Suppl 1):S59
Demographic and clinical factors associated with objective nebuliser adherence among adults with CF
Hoo ZH, Gardner B, Curley R, et al
J Cyst Fibros 2017;16(Suppl 1):S59
CFHealthHub: using Leeds criteria and clinicians’ decision to determine the pseudomonas status among the 64 adults with cystic fibrosis in the two centre CFHealthHub pilot study
Hoo ZH, Waterhouse S, Nightingale JA, et al
J Cyst Fibros 2017;16(Suppl 1):S105
The importance of data completeness in determining centre-level nebuliser adherence rates
Hoo ZH, Curley R, Campbell MJ, et al
Pediatr Pulmonol 2016;51(S45):S448-S449
Improving nebuliser adherence in an adult CF centre – differences in unadjusted adherence vs normative adherence
Hoo ZH, Curley R, Walters SJ, et al
Pediatr Pulmonol 2016;51(S45):S449
Rescue and prevention in cystic fibrosis: an exploration of the impact of adherence to preventative nebulised therapy upon subsequent rescue therapy with IV antibiotics in adults with CF
Hoo ZH, Campbell MJ, Curley R, et al
J Cyst Fibros 2016;15(Suppl 1):S120
Metrics that matter: making the invisible visible as adherence support moves a patient from a dependence on unscheduled rescue to planned prevention
Hinchliffe C, Rose C, Wildman MJ
J Cyst Fibros 2013;12(Suppl 1):S138
Quality Improvement using CFHealthHub
Delivering Quality Improvement (QI) coaching in a virtual world: the use of digital technology to empower and engage CFDigiCare clinicians to undertake QI activities nationally
Carolan C, Dawson S, Choyce J, et al
Submitted 2021
CFHealthHub a digital learning health system supporting virtual clinics and self-care across 60% of UK adult CF centres: A survey to understand benefits amongst the national CFDigiCare community
Cunningham J, Dawson S, Carolan C, et al
Submitted 2021
The introduction of a quality improvement focus group in a large UK adult CF Centre
Choyce J, Patel N, Whitehouse, et al
Submitted 2021
How open innovation has enabled UK CF teams from the CFHealthHub digital learning health system to share practice and experience during the COVID-19 pandemic to accelerate improvement
Carolan C, Dawson S, Shepherd E, et al
Pediatr Pulmonol 2020;55(S2):S332
Using the CFHealthHub digital health system to provide distance nebuliser adherence support: a 6-month service evaluation comparing uptake and changes in adherence from support offered within normal working hours compared to in the evening
Carolan C, Clarke C, Girling C, et al
J Cyst Fibros 2020;19(Suppl 2):S146
Google’s Aristotle, psychological safety and the role of microsystems meeting skills to optimise multidisciplinary meetings during implementation of the CFHealthHub digital learning health system
Carolan C, Lowther M, Girling C, et al
J Cyst Fibros 2020;19(Suppl 2):S24
Maintaining the motivation of staff who are maintaining the motivation of patients to change: it’s a parallel process
Pipeva A, Carolan C, Edenborough F, et al
J Cyst Fibros 2020;19(Suppl 2):S23-S24
Embedding objective adherence data available on CFHealthHub into a weekly MDT meeting: a quality improvement project
Dawson S, Dewar J
J Cyst Fibros 2020;19(Suppl 2):S151
“Nobody knows what the patient is actually taking!” Understanding nebuliser regimens in an adult cystic fibrosis centre: a systems optimisation project
Dawson S, Millward S, Parr L, et al
J Cyst Fibros 2020;19(Suppl 2):S150
The future for cystic fibrosis clinic structure?
Shepherd E, Allenby M. Staggering!
J Cyst Fibros 2020;19(Suppl 2):S159
A quality improvement project to increase the use of objective adherence data and adherence plans in a regional CF physiotherapy service
Shepherd E, Green S
Pediatr Pulmonol 2019;54(S2):S458-S459
Quality improvement within a learning health system: using PDSA cycles to embed a digital behaviour change platform, CFHealthHub, in routine care
Carolan C, Lowther M, Clarke C, et al
J Cyst Fibros 2019;18(Suppl 1):S52
Supporting patients to move from rescue to prevention: meeting patients on their own terms – a preliminary evaluation of out of hours adherence telephone support offered to cystic fibrosis patients using the digital health system CFHealthhub
Carolan C, Clarke C, Lowther M, et al
J Cyst Fibros 2019;18(Suppl 1):S179-S180
How physiotherapists improved prescription accuracy for nebuliser treatment: using click analytics from CFHealthHub, a digital adherence system, to monitor quality improvement
Clarke C, Carolan C, Lowther M, et al
J Cyst Fibros 2019;18(Suppl 1):S179
Identifying the challenges involved in maintaining an accurate record of patient nebuliser prescriptions at a UK adult CF Centre: a quality improvement project
Dawson S, Haynes F, Millward S, et al
J Cyst Fibros 2019;18(Suppl 1):S177
Understanding objective adherence to preventative inhaled therapies at a centre level for quality improvement – a CFHealthHub (CFHH) improvement collaborative study
Hoo ZH, Totton NV, Waterhouse S, et al
J Cyst Fibros 2019;18(Suppl 1):S51-S52
CFHealthHub: iterative co-production of a data feedback platform providing patient level adherence data to multi-disciplinary teams to optimise individual care and centre level adherence data to centre directors allowing benchmarking to enable centre level quality improvement cycles in a 3 centre improvement collaborative
Horspool K, Whelan P, Wildman M
J Cyst Fibros 2017;16(Suppl 1):S155