Patient-Reported Outcomes and Observer-Reported Outcome Assessment for Childhood Chronic Kidney Disease

Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Trials.

Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs)

In recent years, there has been an increased focus on placing patients at the center of health care research and evaluating clinical care in order to improve their experience and ensure that research is both robust and of maximum value for the use of medicinal products, therapy, or health services. This paper provides an overview of patients' involvement in clinical research and service evaluat...

Patient-Reported Outcomes in Patients with Chronic Kidney Disease and Kidney Transplant—Part 1

Chronic kidney disease (CKD) is a complex medical condition that is associated with several comorbidities and requires comprehensive medical management. Given the chronic nature of the condition, its frequent association with psychosocial distress, and its very significant symptom burden, the subjective patient experience is key toward understanding the true impact of CKD on the patients' life....

Patient-Reported Outcome Measures for Chronic Obstructive Pulmonary Disease

BACKGROUND Patient-reported outcome measures (PROMs) are intended to reflect outcomes relevant to patients. They are increasingly used for healthcare quality improvement. To produce valid measures, patients should be involved in the development process but it is unclear whether this usually includes people with low literacy skills or learning disabilities. This potential exclusion raises concer...

Patient-Reported Outcomes, Patient-Reported Information

Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which di...