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Cystic Fibrosis Trust

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How PWCF interpret and respond to the PAM-13


Therapeutic category
the type of treatment or therapy being studied. A therapy could range from a medication addressing a particular characteristic of CF to a device or activity e.g. exercise


Trial status

Closed to recruitment - in follow up

Participating Centres
the different stages involved in the development of a new medication. Phase I focuses on initial safety in people. Phase 2 evaluates safety, correct dose and early signs of whether the medication works. Phase 3 is the stage before medication licensing and looks at safety and medication effectiveness. Phase 4 evaluates longer term use of a medication after it has been licensed for use

Not Applicable

Full title

A 'think-aloud' investigation of how people with Cystic Fibrosis interpret and respond to the Patient Activation Measure (PAM-13)

Cystic Fibrosis affects 10,000 people in the United Kingdom (UK). People with Cystic Fibrosis (PWCF) typically die from lung damage at a median age of 28 years. Randomised controlled trials show that preventative medications reduce exacerbations and/or preserve lung function. However adherence is poor. We have been funded to undertake a five year programme to develop and evaluate a new approach to helping PWCF adhere to their nebulisers. We have undertaken a number of studies as part of this full programme and all have received a favourable opinion from an NHS REC. This study focuses on the usage of the PAM-13 which is being used as one of the secondary outcome measures to evaluate the intervention we developed. While we would expect that people with higher patient activation scores or levels would have higher levels of adherence no such pattern could be discerned from an initial analysis of the pilot trial baseline data (WP 3.1, Arden et al., unpublished). This has led to the question of how patients with Cystic Fibrosis in the UK interpret and respond to the PAM-13. Given the limited existing evidence of the effectiveness of the PAM-13 in UK patients, especially those with multiple co-morbidities, it is for the ACtiF programme, as well as the usage of the PAM-13 across the UK in a range of contexts that we understand how people are interpreting and responding to the items of the PAM-13. This study therefore aims to use a 'think-aloud' methodology to investigate how people with CF, and with other co-morbidities, understand and answer the PAM-13.

Trial Reference Number


Trial type


Length of participation
the length of time a participant will take part in a trial, from the first to the last appointment

1 day

Recruitment target
the number of participants who need to be recruited for the trial in the UK


Last edited date

11 May 2017

CF sponsor

Sheffield Teaching Hospitals NHS Foundation Trust

CF sponsor type


Who can take part?



Top inclusion criteria
  • Cystic Fibrosis diagnosis
  • 16 years +
  • Using the I-neb or E-track nebuliser
Top exclusion criteria
  • Post-transplant, on the active transplant list or are in the palliative phase
  • Pregnant
  • Non-English speakers

CF centres running this trial


Sheffield Teaching Hospitals NHS Foundation Trust


Northern General Hospital Herries Road Sheffield South Yorkshire S5 7AU

Recruitment starts

May 2017

Recruitment ends

October 2017


Wildman, Martin

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