How PWCF interpret and respond to the PAM-13


Therapeutic category
Trial status
Completed Participating Centres
Not Applicable

Full title

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

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no such pattern could be discerned from an initial analysis of the pilot trial baseline data (WP 3.1, Arden et al., unpublished).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
1 day
Recruitment target
Last edited date
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

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