Building Partnerships to Improve Health Outcomes: Pediatric Patient and Family Engagement in Nephrology Practice

As health care practices have evolved from a disease-oriented to patient-focused paradigm, patient and family engagement (PFE) has been recognized as an important aspect of health care delivery and outcomes. While pediatricians have long approached care delivery with a family-centered lens, PFE may be a less familiar concept to situate among related concepts such as shared decision-making, self-efficacy, patient activation, and family-centered care. Children with CKD and their families indicate a need and desire for enhanced PFE efforts in pediatric nephrology. Improving PFE offers the opportunity to provide our patients and families with skills that will positively impact their health and wellness throughout their lives. In this review, we define PFE, describe the components of and levels at which PFE occurs across the health care system, examine PFE interventions of promise, and finally suggest future directions to support PFE in pediatric nephrology.