Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study

Abstract

ContextChildhood cancer care is delivered by interprofessional health care teams; however, little is known about how parents perceive overall team-delivered care (TDC). ObjectivesWe sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics. MethodsCross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multisite symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding three months. Likert-scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork, and other factors. Factors associated with parent perceptions of excellent TDC were identified using Fisher's exact test. ResultsEighty-six parents (83%) responded. During the preceding three months, 63% (n = 54) of parents reported excellent TDC. However, only 47% (n = 40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%; n = 60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, and primary nurse) was associated with excellent TDC (all P ≤ 0.001; no correction for multiple comparisons). ConclusionAmong parents of children with advanced cancer, more than one-third report less-than-excellent TDC. In addition, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest that interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.