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

Abstract

Background Patient activation refers to patients’ knowledge, skills, and confidence in self-managing health conditions. In large cross-sectional studies, individuals with higher patient activation are observed to have better health outcomes with the assumption that they are more engaged in health self-management. However, the association between patient activation and objectively measured self-care indicators in individuals can be inconsistent. This research investigated the role of patient activation as measured by the UK Patient Activation Measure (PAM-13) in adults with Cystic Fibrosis (CF). The aims were twofold: to explore how adults with CF interpret and respond to the PAM-13; and to investigate the association between PAM-13 and objectively measured nebuliser adherence in UK adults with CF. Methods This article describes two studies which examined the PAM-13 from different perspectives. Study 1 comprised ‘think aloud’ interviews with 15 adults with CF. The data were analysed using an a priori coding framework. Study 2 examined the association between PAM-13 and objectively measured nebuliser adherence in 57 adults with CF. Results Study 1 showed that adults with CF encountered several difficulties while completing the PAM-13. The difficulties were related to understanding how to interpret aspects of CF in order to respond ( i.e., control over the condition, ability to exercise) and item wording. Some adults with CF responded to the PAM-13 in an optimistic way in relation to what they thought they should do rather than what they actually do. These findings were echoed by the results of Study 2, which showed that PAM-13 scores were not significantly correlated with objective medication adherence in a different sample. This article synthesises the results of both studies, providing insights into influences and associations of patient activation as measured by the UK PAM-13 in adults with CF. Conclusions There were some significant difficulties created by the wording of the UK PAM-13 for adults with CF. This may partly explain the finding that PAM-13 scores were not related to objectively measured nebuliser adherence in this study. The UK PAM-13 would benefit from further research to verify its validity and reliability in different patient populations against objective measures of behaviour rather than simply self-report.

Adherence to prophylaxis and its association with activation of self‐management and treatment satisfaction

“…In addition, this current study failed to identify any correlation between adherence and PAM‐13 scores ( r = .41; p = .6. These results are not comparable with those reported for several other studies that examined the association between PAM‐13 scores and adherence in other chronic disorders 21,23,24 . A possible explanation for this could be the difference in study design (RCT or Pre‐ to post‐test) and use of an different method to assess adherence.…”

Weight and weight control behaviors during long‐term endometrial cancer survivorship: Results of the Laparoscopic Approach to Cancer of the Endometrium long‐term follow‐up study

“…29 Patient Activation Measure (PAM-13): This instrument measured the self-management of health conditions by assessing knowledge, skills, and confidence. 30,31 The responses to 13 items were measured from strongly disagree (1) to agree strongly (4). The mean score of the PAM-13 is the summation of total scores divided by the number of items responded, then this mean score was transformed into a 0-100 scale.…”

Measures of Patient Activation and Self‐Efficacy

“…When the PAM‐13 is used as a research tool (eg, to evaluate interventions) or in situations in which careful direction or additional help is not possible, the results of the PAM‐13 need to be interpreted with caution (40).…”