TABLE 2

Research Agenda for PCCI

DomainsResearch Questions
CCI definition• Does the proposed definition of PCCI capture the appropriate patient population?
• Is there a PCCI syndrome analogous to CCI in adults (including neurologic, metabolic, endocrine, and musculoskeletal sequelae)?
• Can the PCCI definition be validated by using a large database?
• Is the definition successful in various types of databases (eg, hospital chart review, administrative databases)?
Patient• Are there risk factors or patterns of illness/ injury that predispose to CCI?
• Are there features of PCCI that are preventable?
• Would a “PCCI score” permit earlier diagnosis of PCCI and/or permit targeted interventions?
• What are the short- and long-term outcomes of PCCI?
• Are there lifelong physiologic implications of meeting diagnostic criteria for PCCI? Do children “recover” from PCCI?
Family, medical team, and health system• What clinical and communication skills are needed to optimize the care of PCCI patients? How can they be taught?
• What are the specific palliative care needs of the PCCI population?
• What is the role of longitudinal care providers in the care of patients with PCCI?
• What are the appropriate care settings for children with PCCI?
• Where should hospital care be provided for older adolescents/young adults with PCCI?
• What are the effects of PCCI on families?
• What supports do families need when caring for a child with PCCI?
Outcomes• How do we improve our assessment of global outcomes of PCCI?
• What can hospital indicators (eg, readmission rate, LOS), quality of life indices (eg, inpatient and outpatient HRQOL), functional status measures, and developmental assessments tell us about PCCI?
• What can indices of caretaker/family coping and satisfaction tell us about PCCI?
Societal• What is the epidemiology of PCCI?
• Are there regional variations in the incidence of, medical management, and care settings for children with PCCI?
• How do we appropriately and fairly allocate health care resources in PCCI? What ethical issues arise around PCCI?
  • HRQOL, health-related quality of life.