Children with special health care needs comprise an estimated 13 to 18 percent of U.S. children. A subgroup of these children are living with serious life-threatening illnesses (SLTIs), which may or may not have potential curative or life-prolonging treatments, but all-too-often result in death. While children with SLTIs are living longer, approximately 15,000 children a year die of conditions that could benefit from specialized pediatric palliative care. These children are increasingly being cared for at home, and home-based pediatric palliative care (HBPPC) is playing a greater role in helping children with SLTIs and their families spend more time at home through the facilitation of interdisciplinary care across medical and social service providers and settings, particularly in the period leading up to and at the very end of life. However, experts are concerned that these children and families are not receiving consistently high-quality HBPPC, and there is an urgent need for the standardized evaluation of patient and family outcomes regarding HBPPC. No previous patient- and family- reported outcome instruments have been developed to specifically evaluate and monitor the quality of HBPPC in the U.S. Therefore, the proposed home-based pediatric palliative care outcomes (HBPPC-Outcomes) study will develop and test a parent-reported outcome instrument to measure the core domains of quality HBPPC in the U.S. through three specific aims: 1) Reduce an item pool of 90 parent-reported outcomes regarding HBPPC, drawn from previously developed outcome measures and a literature review, to approximately 36 items based on expert judgments of importance using a discrete choice experiment with a panel of at least 32 national PPC experts and 4 ?professional? parents; 2) Rank order the reduced set of 36 items to approximately 18 items based on parental judgment of importance using a discrete choice experiment with a sample of 30 parents whose children are receiving or who have received HBPPC services; and 3) Perform cognitive interviews to evaluate the relevance and clarity of the importance-rank-ordered items in an independent sample of 20 parents whose children are receiving or who have received HBPPC services. The proposed instrument will focus on an adaptation of Bainbridge et al.?s (2010) patient-level outcome domains: 1) experiences, 2) satisfaction, and 3) perceptions. Only by evaluating and monitoring patient and family outcomes can we begin to understand how to improve the care we provide to children with SLTIs and their families living at home. The proposed study is the first to develop an instrument to specifically evaluate HBPPC outcomes in the U.S., and fits within the applicant?s long-term research goals to better understand and improve the quality of care for all children with SLTIs and their families, particularly those who spend the last phase of life at home. The proposed study and the applicant?s long-term research goals align closely with the National Institute of Nursing Research?s strategic research plan to advance high-quality, evidence-based palliative care, particularly for children and families.
In the U.S., children with serious life-threatening illnesses are increasingly living longer and being cared for at home. It is critically important to evaluate the outcomes of home-based pediatric palliative care to better understand how to improve the quality of care for these children and their families, particularly in the period leading up to and at the very end of life.
