Current research in pediatric hospice and palliative care focuses on inpatient hospice and
palliative care settings and is still largely driven by adult-based data and paradigms,
insufficiently addressing clinically significant needs of children and adolescents. The long-term
goal is to design pediatric home-based hospice and palliative care (PHBHPC) care systems
tailoring high-quality, goal-concordant, personalized care to children, adolescents, and families.
The overall objective of this proposal is to develop a single set of PHBHPC quality domains
integrating newly-identified, patient-prioritized perspectives with those from clinicians and
parents. The central hypothesis is that pediatric patients will use different language to describe
important aspects of their care than providers or parents. This hypothesis builds on the team’s
prior collaboration, using a Delphi process through which PHBHPC providers identified two
novel domains: Continuity of Care and Bereavement. This team’s subsequent study with
parents of children receiving PHBHPC identified another domain: Compassionate Care. The
rationale is that the proposed study provides the missing dimension of children themselves in
defining PHBHPC, and integrates their voices with caregivers and providers to inform
benchmarking and quality improvement, program development and evaluation. In order to
achieve the objective, the following three specific aims will be pursued: 1) Establish and define
factors children and adolescents identify as important in PHBHPC; 2) Extend and validate
existing provider and caregiver datasets to maximize representativeness and minimize historical
threat; and 3) Integrate patient-prioritized factors with those from providers and caregivers into a
single document of PHBHPC domains of quality. The proposed research is innovative, in the
applicants’ opinion, because it represents a substantive departure from the status quo by
shifting current research paradigms in three ways. First, the perspectives of all stakeholders are
collected and integrated: PHBHPC patients, parents or other caregivers, and providers.
Second, the focus is on PHBHPC rather than on inpatient hospice and palliative care. Third, the
gaps in populations designated by NIH as under-studied are addressed. This contribution is
expected to be significant because it will be the first to study PHBHPC quality integrating all
stakeholder input – patient, family, and clinician – enabling improved quality science through
benchmarking and data sharing, patient-reported outcomes measure development, and future
research to connect care delivery to health outcomes.
