Home-based Pediatric Palliative Care Outcomes Study

家庭儿科姑息治疗结果研究

• 批准号: 9982448
• 负责人: Jackelyn Y Boyden
• 金额: $ 0.89万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-06-01 至 2020-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9982448
• 关键词: Academy; Affect; American; Attention; Bereavement; Caring; Cessation of life; Child; Child Care; Childhood; Complex; Country; Evaluation; Family; Funding Mechanisms; Goals; Healthcare; Healthcare Systems; Home Care Services; Home environment; Home visitation; Hospice Care; Hospitals; Inpatients; Institute of Medicine (U.S.); Intervention; Judgment; Life; Measures; Medical; Monitor; National Institute of Nursing Research; Outcome; Outcome Measure; Outcome Study; Palliative Care; Parents; Patient Monitoring; Patients; Pediatrics; Perception; Phase; Play; Primary Health Care; Provider; Publishing; Quality of Care; Quality of life; Reporting; Research; Resources; Review Literature; Role; Sampling; Service setting; Social Policies; Social Work; Standardization; Structure; Subgroup; Supportive care; Testing; Time; base; care coordination; care costs; care outcomes; care systems; cognitive interview; community setting; end of life; evidence base; experience; experimental study; hospice environment; improved; instrument; prevent; programs; satisfaction; service providers

PROJECT SUMMARY 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.

项目总结

项目成果

Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach.

• DOI: 10.1186/s12904-020-00703-0
• 发表时间: 2021-01-14
• 期刊: BMC palliative care
• 影响因子: 3.1
• 作者: Boyden JY;Feudtner C;Deatrick JA;Widger K;LaRagione G;Lord B;Ersek M
• 通讯作者: Ersek M

What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting?

• DOI: 10.1016/j.jpainsymman.2020.07.024
• 发表时间: 2021-01
• 期刊: JOURNAL OF PAIN AND SYMPTOM MANAGEMENT
• 影响因子: 4.7
• 作者: Boyden, Jackelyn Y.;Ersek, Mary;Deatrick, Janet A.;Widger, Kimberley;LaRagione, Gwenn;Lord, Blyth;Feudtner, Chris
• 通讯作者: Feudtner, Chris