The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.

CONTEXT: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S. Ensuring equitable, high-quality home-based PPHC for all children requires the evaluation of families' care experiences and assessment of whether these experiences are aligned with their needs and priorities. OBJECTIVES: To evaluate the psychometric properties of the previously developed 23-item home-based PPHC EXPERIENCE Measure for use with families of children receiving home-based PPHC in the United States. METHODS: Participants included families recruited from the Children's Hospital of Philadelphia, Courageous Parents Network, and several other hospital- and community-based PPHC programs across the U.S. who provide home-based PPHC services. Participants completed the EXPERIENCE Measure at baseline and again at retest. We evaluated the factor structure of the EXPERIENCE Measure, as well as evidence regarding score reliability and validity. RESULTS: Eighty-two family participants completed the baseline and 53 completed the retest questionnaire from 15 states across the U.S. We found evidence for the score reliability and validity of a four-domain EXPERIENCE measure. CONCLUSION: The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received. Future work will evaluate the usability (i.e., acceptability, feasibility, and clinical actionability) of EXPERIENCE, including the sensitivity of the instrument to change over time and its impact on real-time clinical actions.

Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.

Post-acute stroke patient outcomes in Ontario, Canada complex continuing care settings.

PURPOSE: In this study, Outcomes are described for patients receiving 'slow stream' rehabilitation care (called low tolerance long duration rehabilitation in Ontario, Canada consisting of approximately 5 h of rehabilitation weekly) for patients recovering from stroke in Ontario complex continuing care (CCC) (chronic) healthcare settings. METHOD: In 2006-2007, 81 post-acute stroke patients recovering in six Ontario, Canada CCC settings were studied. Both primary and secondary data sources were used to calculate six clinical characteristics of study patients and three outcomes: patient satisfaction with care, discharge location, and length of CCC stay. In addition, descriptive statistics, tests of difference were employed to examine differences in clinical characteristics and outcomes for patients across facilities. RESULTS: Mean patient age was 74 years, 59% were females, 51% were married, and 34.6% lived alone prior to hospitalization. Patient data on six clinical characteristics is described. Almost half of patients were discharged to independent or semi-independent living. Mean length of stay (LOS) was 112.8 days. Mean scores for patient-reported satisfaction with care were 71 (out of 100). There were statistically significant differences in all outcomes across facilities. CONCLUSIONS: Slower paced and less intensive rehabilitation was successful in transitioning the majority of patients to independent living or to a healthcare setting providing less intensive care. Opportunities exist to promote increased patient satisfaction with care.