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

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.

Submitted 2020

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

Health and habits. The Psychologist [Internet] 2019 [cited 2019 Mar 4]. p. 07.

Arden M.

Available from: https://thepsychologist.bps.org.uk/volume-32/march-2019/health-and-habits

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

Using a learning health system to understand medicines waste in cystic fibrosis – the Easy Medicines for Burden Reduction And Care Enhancement (EMBRACE) study

Bevan A, et al

Submitted 2021

EMBRACEing medicines optimisation: working as a collaborative to identify barriers and share solutions in the medication pathway across13 sites within the CFHealthHub using microsystems coaching academy methodology

Carolan C, Bevan A, Bush N, et al

Submitted 2021

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; https://ehps.net/ehp/index.php/contents/article/view/2879

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; https://www.ehps.net/ehp/index.php/contents/article/view/2042

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