University of Exeter
Researchers at the University of Exeter are exploring the psychosocial barriers to physical activity and physical activity promotion via a series of qualitative interview studies, systematic reviews and surveys. Data will help inform the development of interventions to support multidisciplinary teams prescribe physical activity, and to support adolescents with CF to be more active. For more information contact Dr Sarah Denford (S.Denford@Exeter.ac.uk) Dr Alan Barker (A.R.Barker@Exeter.ac.uk) or Professor Williams (C.A.Williams@Exeter.ac.uk)
A trial investigating digital physical activity promotion interventions for young people with cystic fibrosis.
Being more physically active has important health benefits for everyone. As a result, achieving recommended weekly physical activity levels is encouraged within the UK. People with cystic fibrosis (CF) can obtain extra benefits, including improved lung function, as well as many psychological and social benefits.
This feasibility trial will help establish whether digitally delivering physical activity promotion material is accessible, usable, and engaging in supporting young people with CF to be more physically active.
This trial will also help to establish if the things that we would like to do in a bigger trial are even possible and acceptable to young people with CF. For example, we would like to use this trial to check if it is possible to recruit enough participants over an acceptable period, and if young people with CF are able and willing to: (a) complete the required questionnaires, (b) take part in interviews, and (c) wear activity monitors at different timepoints during the trial.
The total time commitment for participation is 6-months, with data collection taking place at the following timepoints: (1) at the start of the trial (baseline), (2) after 1-month of trial participation, and (3) after 6-months of trial participation. Access to the digitally delivered physical activity promotion material will be provided throughout this 6-month period.
This trial is open to anyone aged between 12 and 18 years old with a confirmed CF diagnosis and access to the internet (via any device). Please note that you do not need to be receiving your care from the CF centres listed as ‘running this trial’ to take part in this trial.
The full study details and how to get involved can be found in the Participant Information Sheets below.
For potential participants between 16 and 18 years of age see: Participant information sheet for 16yrs and older (v4)
For potential participants between 12 and 15 years of age, please see both the:
- Information sheet for parents of those under the age of 16
- Participant information for those under the age of 16
If you would like to take part, you will be asked to provide informed consent (provided below for information only at this stage).
- participant assent (12-15yrs) 308638_Digi_PA_for_Youth_CF_Assent_Form_12-15yo_V3.0_15_11_22
- parent/guardian/carer consent 308638_Digi_PA_for_Youth_CF_Consent_Form_Parents_and_Carers_V4.0_15_11_22
- participant consent (16-18yrs) 308638_Digi_PA_for_Youth_CF_Consent_Form_16-18yo_V4.0_15_11_22
If you would like to take part, please email A.Senequier@exeter.ac.uk
At Swansea University, the team are systematically reviewing the existing calibration and validation studies in the literature, and determining thresholds for classification of PA intensity using accelerometry. For more information contact Dr Kelly Mackintosh (K.Macintosh@Swansea.ac.uk) Dr Melitta McNarry (M.Mcnarry@Swansea.ac.uk) or Mayara Silveira (M.SILVEIRA-BIANCHIM.email@example.com)
Researchers at UCL are conducting a follow-up assessment of the INSPIRE-CF trial. This involves retesting with as many INSPIRE-CF participants as possible to explore the long term impact of the trial once it has ended. The team are also interviewing a selected sample of INSPIRE-CF participants. These interviews are exploring experience of exercise, exercise interventions, establishing barriers/facilitators, current practices, what it is that helps maintain change. These projects will inform the development of an exercise screening tool for use in clinical practice to help identify required exercise interventions/support/education for an individual with CF. For more information contact Professor Eleanor Main (E.Main@UCL.ac.uk) Helen Douglas (H.Douglas@UCL.ac.uk) Dr Sarah Rand (S.Rand@UCL.ac.uk) or Dr Mandy Bryon (Mandy.firstname.lastname@example.org)
La Trobe University
At La Trobe University in Melbourne, the team The team are leading a randomised controlled trial to determine whether use of an online program (ActivOnline – www.activonline.com.au) to track physical activity participation and provide feedback, is more effective than usual care at improving physical activity participation, exercise capacity and quality of life, and prolonging the time to next hospital admission. For more information contact Dr Beverly Eldridge (B.Eldridge@Latrobe.edu.au) Professor Anne Holland (A.Holland@Latrobe.edu.au) or Dr Narelle Cox (N.Cox@Latrobe.edu.au)
The Hospital for Sick Children
In Canada, the team at The Hospital for Sick Children are leading a cross-sectional observational pilot study designed to expose the pathophysiological mechanisms of exercise intolerance, barriers to physical activity in CF, and the effects of CFTR class-specific modulator therapy on these mechanisms. Novel study findings will enable the use of broader functional outcome variables in determining clinical efficacy in patients with CF. To understand potential clinical variability in improvements of exercise tolerance and barriers to exercise following CFTR modulator therapy, the team will perform an additional nested longitudinal study investigating variables of interest before and following enrolment in CFTR modulator therapy. For more information contact Jessica Caterini (Jessica.email@example.com), Dr Greg Wells (firstname.lastname@example.org) or Dr Jane Schneiderman (Jane.email@example.com).