Abstract
BackgroundPatient 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.MethodsThis 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.ResultsStudy 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.ConclusionsThere 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.
Highlights
Patient activation refers to patients’ knowledge, skills, and confidence in self-managing health conditions
Study 1: A think-aloud study of completion of Patient activation measure (PAM-13) by adults with Cystic Fibrosis (CF) In study 1, the result showed that the majority of participants (12 out of 15) were at Patient Activation Measure (PAM) Level 3 and above
This research consists of two related studies investigating the patient activation measure (PAM) in patients with Cystic Fibrosis (CF), a long-term condition with important co-morbidities in which self-management is critical to optimum outcomes
Summary
Patient activation refers to patients’ knowledge, skills, and confidence in self-managing health conditions. The association between patient activation and objectively measured self-care indicators in individuals can be inconsistent. Patient activation is a concept that is used to describe a patient’s knowledge, skills, and confidence in managing his or her health conditions [1]. The original Patient Activation Measure (PAM) has 22 items and a 13-item version has been developed (PAM-13) [6]. Both utilise a four-point Likert scale of agreement-disagreement to respond to each item. PAM is scored on a scale from 0 to 100 from which four levels of activation have been identified: Level 1 (0.0–47.0) low activation suggesting that the person does not yet understand their role in healthcare; Level 2 (47.1–55.1) indicating that the person does not yet have the knowledge and confidence to take action; Level 3 (55.2–72.4) indicating that the person is beginning to engage in positive health behaviours; Level 4 (72.5–100) indicating that the person is proactive and engaged in recommended health behaviours [7]
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