How PWCF interpret and respond to the 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no such pattern could be discerned from an initial analysis of the pilot trial baseline data (WP 3.1, Arden et al., unpublished).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.