Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM® 13 for Adolescents

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Healthcare specialists expect adolescent patients with chronic conditions to be proactive and to take responsibility for self‐management of their health, especially in the context of transitional care. Patient activation is defined as the knowledge, skills, beliefs, and behaviors that patients need to manage their own health and health care, to cooperate with health providers, to preserve their health functioning, and to access care appropriate to their conditions (Hibbard, Stockard, Mahoney, & Tusler, 2004). In a recent study, a higher patient activation level was related to positive health outcomes including lower rates of depression, obesity, and smoking, as well as to lower costs of care, in a sample with an average age of 51 (Greene, Hibbard, Sacks, Overton, & Parrotta, 2015). There are only few studies of adolescents, but these also show a positive association between high patient activation and positive health outcomes (Haas, Martin, & Park, 2017; Huang et al., 2014). However, large longitudinal investigations of patient activation as predictor of health outcomes in adolescent samples have not been reported, perhaps due to lack of a valid instrument to assess patient activation in this target group.
Patient age is known to affect transition (Betz, 2004). Measurement of patient activation is particularly important for adolescents with chronic conditions when they are in transition from pediatric medicine to adult medicine, which includes the transfer to a new treatment setting and assumption of responsibility for management of their chronic conditions (Blum, 2002; Blum et al., 1993; Crowley, Wolfe, Lock, & McKee, 2011). An unsuccessful transition due to missing or discontinuous follow‐up with a clinical specialist in adult care can lead to increased morbidity and mortality (Busse et al., 2007; Kennedy, Sloman, Douglass, & Sawyer, 2007; Pacaud, Yale, Stephure, Trussell, & Davies, 2005; Singh et al., 2010).
Because the process of transition demands special competencies from adolescents, including self‐management and proactive health care behavior, there is strong clinical and scientific utility of an instrument to measure their current level of patient activation (Crowley et al., 2011; Hibbard & Greene, 2013). In adult care, treatment settings require more autonomy and active involvement in disease management (Kennedy et al., 2007). For pediatricians, it is extremely useful to be aware of an adolescent's activation level when planning and timing the transition process. Equally, assessing patient activation level after the transfer could help adult specialists gain a better understanding of their role in the following patient–provider encounter and to individually adjust future treatment plans to the unique needs of a young adult patient.
One of the most frequently used questionnaires is the Patient Activation Measure® (PAM®), a self‐assessment of the level of patients’ engagement in their health care (Hibbard, Mahoney, Stockard, & Tusler, 2005). The original English long version has 22 items (PAM®; Hibbard et al., 2004) and a short form has 13 items (PAM‐13®; Hibbard et al., 2005). The PAM® was validated in different samples of inpatients and outpatients and is used internationally (Rademakers et al., 2016) in different translated versions, including Danish (Danish PAM13; Maindal, Sokolowski, & Vedsted, 2009), Dutch (PAM‐13 Dutch; Rademakers, Nijman, van der Hoek, Heijmans, & Rijken, 2012), German (PAM 13‐D; Brenk‐Franz et al., 2013; Zill et al., 2013), Hebrew (PAM‐H; Magnezi & Glasser, 2014), and Korean (PAM13‐K; Ahn, Yi, Ham, & Kim, 2014). However, it is mainly used for and validated in adult patients ages 40 years or older.
Until now, there have been only two studies using the PAM® in a transitional context for adolescents with chronic conditions (Disabato, Cook, Hutton, Dinkel, & Levisohn, 2015; Huang et al., 2014).
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