Patient-Defined Goal Attainment and Progress in the PatientsLikeMe (PLM) Community: Insights From a Longitudinal, Quantitative, Decentralized Study Using the PLM Platform
Background: Major depressive disorder (MDD) remains a leading cause of disability, and many patients do not achieve remission. Goal-setting can direct desirable behavioral changes and improve patient-provider engagement. This patient-centric study captured real-world outcomes on goal attainment and patient engagement via the PatientsLikeMe (PLM) platform.
Methods: Decentralized, longitudinal, observational study enrolled US-based adults with MDD from the PLM online community and a recent antidepressant start or switch. Participants completed surveys at baseline, week (W) 12, and W24. Secondary endpoints included setting 3 goals using Goal Attainment Scale Adapted for Depression (GAS-D); PGI-I, PDQ-D5, WHO-5, CD-RISC-10, Q-LES-Q-SF, and PHQ-9 scores; and patient engagement. Primary and key secondary results were previously reported.
Results: Participants reflected population diversity (Nf503; 38% non-White). At baseline, 56% of participants reported discussing treatment goals with their HCP, and 33% had personal health goals, of which 53% were developed with an HCP. By W12, 61% reported discussions about goal-setting, and 49% received HCP guidance; ~90% of participants were willing to use a goal-tracking tool, and 87% preferred mobile apps. GAS-D scores significantly correlated with improvements in depression severity (PHQ-9, W12: P<.001; W24: P<.01), cognitive function (PDQ-D5, W12: P<.001), resilience (CD-RISC-10, W12: P<.001), and life satisfaction (Q-LES-Q-SF, W24: P< 0.05). Retention rate reflecting patient engagement was 95% at W12 and 90% at W24.
Conclusion: The diverse population and exceptionally high retention rate in this study underscore the role of community in understanding patient experiences and informing care models. These findings support the clinical relevance of patient-defined goals in MDD.
