13 - Integrating Patient-Reported Outcomes Into Research and Clinical Practice: Measures of Health-Related Quality of Life and Mental Health

Abstract

Patient-reported outcomes (PROs) are rigorously developed instruments that assess the patient’s perspective on a variety of health behaviors and outcomes. They provide unique information about symptoms, emotional well-being, daily functioning, and response to treatment. Their inclusion promotes collaborative, patient-centered care, which is critical in chronic pulmonary conditions. PROs range from single-item ratings of symptoms to multidimensional, profile measures of health-related quality of life (HRQoL). Condition-specific HRQoL measures have been developed for many pediatric respiratory conditions and are more informative and sensitive to change than generic measures. They provide key information on how a patient functions, feels, and survives and can be included as primary or secondary outcomes in drug registration trials. Growing evidence also indicates that patients with chronic respiratory conditions report elevated symptoms of depression and anxiety, and, thus, integration of routine mental health screening is recommended. Depression and anxiety affect disease management (e.g., adherence, clinic attendance), inflammation, number of pulmonary exacerbations, days in the hospital, and mortality. PROs reviewed in this chapter focus on HRQoL measures for asthma, cystic fibrosis (CF) and primary ciliary dyskinesia (PCD), and screening measures of mental health: depression and anxiety, specifically. Integration of PROs into clinical care promotes patient-provider communication, identifies problematic areas of functioning, and enhances shared decision-making. Technological advances have facilitated their administration and scoring using tablets, smartphones or internet links, and incorporation into electronic medical records. To foster more collaborative, patient-centered care, utilization of these PROs is recommended to reflect the voice and experience of the patient and family.