In 2004 Hibbard et al. developed and tested the Patient Activation Measure (PAM), a 22-item instrument which assesses patient (or consumer) self-reported knowledge, skills and confidence for self-management of one’s health or chronic condition [1
]. In 2005 a 13-item Short Form of the PAM was developed, which has the same psychometric properties as the longer version and is both reliable and valid – see Table [2
]. Both versions of the instrument measure the level of activation of a specific individual. The PAM divides consumers and patients into one of four progressively higher activation levels, which are associated with specific self-care and other health related behaviours. Research has repeatedly shown that a higher score on the PAM is positively associated with various health related behaviours, such as preventive care and lifestyle behaviours, information seeking and use of health information, health outcomes and healthcare use, monitoring and medication adherence, conduct in the patient-provider encounter and self-management [3
]. These effects have been demonstrated both in a clinical setting with chronically ill patients but also in other populations (e.g. company employees, senior citizens in community centres) [5
13 item Patient Activation Measure ¹
Though the concept of patient activation has a high face validity and was carefully constructed using experts consensus and patient focus groups [1
], an important question remains what construct the instrument is actually measuring. Studies on the construct validity of the PAM predominantly focus on the possible overlap with the concept of health literacy. In some studies the relative contribution of health literacy and patient activation was examined in relation to a number of health related behaviours and choices [7
]. Two studies showed that the association between patient activation and measures of health literacy was weak, indicating that these are two distinct concepts [7
]. The other study distinguished between numeracy, literacy and activation [9
]. In this study more activated patients were better able to understand and use comparative health care information, even when they had lower numeracy and literacy skill levels. It was suggested that activation might be a proxy for motivation and can compensate for lower skills. In all three studies, however, health literacy was defined on a functional level. The broader definition of health literacy by Nutbeam [10
] distinguishes between functional, communicative/interactive and critical literacy. These latter components definitely show conceptual overlap with patient activation. Nutbeam includes aspects such as motivation, personal skills and self-efficacy in his definition of health literacy and acknowledges that ‘different levels of literacy progressively allow for greater autonomy and personal empowerment’ [10
Knowing a person’s activation level is relevant because it can help providers to effectively communicate with their patients and to tailor health messages and self-management goals [4
]. Compared to the regular patient approach, an intervention with tailored messages has proven to lead to greater improvement in the patients’ biometrical clinical indicators, in their adherence to prescribed medication regimens and to a reduction in hospitalizations and use of the emergency department [11
]. Furthermore, patient activation has proven to be a changeable characteristic [6
]. This makes the concept even more relevant since it can not only be used for categorizing patients and consumers and tailoring support and education, but also for actual improvement of consumer participation with respect to health and health care, both on an individual and on a population level.
The Patient Activation Measure has been studied extensively in the USA. Since many of the American problems regarding the management of health and chronic diseases also exist in the Netherlands, there is a definite clinical and scientific need for an instrument that can help differentiate patients and consumers into subgroups that require different strategies in health support, information and communication. An official, validated Dutch version of the PAM would be suitable and relevant for this purpose. Similar initiatives have been taken in Norway and Denmark [13
]. Therefore, a research project was performed in the Netherlands in order to:
translate the American short form Patient Activation Measure (PAM 13) into a Dutch version;
establish the psychometric properties of the Dutch version of the PAM 13; and
validate the Dutch version of the PAM in a panel of chronically ill patients.
For validation purposes, the concept of health literacy was chosen, even though previous studies have shown a weak association between the two [7
]. Since all these studies were done in the USA, and the Netherlands’ health care system and patients are different to a major extent, the choice for replication was made. Only very recently, health literacy instruments were translated in Dutch [15
] and available for clinical practice and research. Therefore this is the first opportunity to confirm or reject earlier findings on the relationship between patient activation and health literacy in the Dutch context.