Abstract
Purpose :
Patient activation refers to the extent to which an individual is able to understand, manage, and advocate for their own healthcare. Research has shown that patients who are more activated are more likely to have better health outcomes and experience more positive interactions with their providers. In this study, Retina International aimed to investigate the status of activation among patients with advanced Age-Related Macular Degeneration (Geographic Atrophy and Wet Age-related Macular Degeneration).
Methods :
The study utilized the Patient Activation Measure (PAM) questionnaire to assess the level of patient activation among the participants. Additional data on age, demographics and wellbeing was also collected. Patients with advanced AMD from three countries – Bulgaria, Germany and the United States were included in the study. The questionnaire was circulated electronically to patient advocacy groups, patient led charities and foundations who then circulated the survey among their members. In Bulgaria and Germany, the majority of the responses were obtained via face-to-face interviews.
Results :
A total of 128 patients across the three countries with advanced AMD were included in the study. The majority of the patients were above the age of 65 years (91%). Overall, the study participants were highly activated (Level 3, median PAM score = 60.60). However, a significantly higher proportion of participants from Bulgaria (59%) were at low activation levels (Level 1 and 2) as compared to participants from Germany (30%) and USA (25%) (p = 0.001). No significant differences were observed in the median PAM scores between males and females (p = 0.12) and between the types of advanced AMD (p = 0.91). Across the three countries, a significantly higher proportion of patients with Geographic Atrophy (76%) were at PAM Level 2 (low activation) compared to patients with neovascular AMD (20%) (p <0.001). No associations were observed between PAM scores and age, area of residence, presence of absence of one or more wellbeing issues, self-reported vision status and the presence or absence of falls (p >0.05 for all).
Conclusions :
Despite the high activation level of patients in this cohort, there is still some scope to increase the level of activation in patients across all countries and in particular, among patients in Bulgaria. Further studies are needed to confirm these findings and determine factors associated with the level of activation.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.