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Abstract:
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Clinical registries are databases that capture information about the health and healthcare use of patients having a particular health condition or healthcare treatment. Patient-reported outcomes (PROs) are increasingly collected in clinical registries; they provide information about the patient’s perspectives on their own health, including pain, perceived functional abilities, and mental health. PRO data in clinical registries can be a valuable tool for clinicians to assess quality of care and improvements in patient health. However, collecting data in a clinical environment can be challenging; patients with chronic health conditions or receiving treatment may be unable or unwilling to respond to lengthy outcome assessment instruments. Also, loss to follow-up may result in substantial missing data, which can reduce statistical power to detect the effect of healthcare interventions on patients’ health status. The purpose of this roundtable session is to: • Discuss strategies to successfully collect PROs in clinical settings, and • Examine state-of-the-art analytic approaches to address the challenges of missing data in clinical registries.
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