Measuring a Patient Reported Outcome: A Pediatric Palliative Care Nationwide QI Collaborative

Outcomes

1. Describe the importance of patient or patient proxy reported outcomes in palliative care.

2. Articulate methods for collaborative use of a survey tool to standardly assess patient and/or family experience with palliative care services.

Key Message

Patient reported outcomes are crucial in the field of palliative care. This nationwide quality improvement collaborative project demonstrates the feasibility of standard implementation of assessment and measurement of a patient/patient proxy reported outcome across 15 pediatric palliative care programs.

Abstract

Introduction: Pediatric palliative care (PPC) aims to enhance the quality of life of children and families facing serious illness. Subsequently, patient reported outcomes (PRO) are crucial; however, development of valid, useful tools for our field has faced several population-specific challenges (1,2). In 2022, the Pediatric Palliative Improvement Network (PPIN) developed a collaborative project to increase the assessment of patient and family experiences with PPC services, including one of the two patient reported palliative care quality measures identified by AAHPM in 2021 (3,4). Objective: By December 31, 2022, our collaborative aimed for: 10 sites contributing data, 50% of eligible PPC patients’ experiences being assessed, and 25% response rate.

Methods

As a PPIN multi-site collaborative, project leaders provided standardized guidance for study processes, accurate timely data gathering, and collaborative learning. Data was collected from January-December 2022. The standardized PPIN family satisfaction survey tool was used as a guide for survey development. All sites included two standardized key indicator questions: 1. “Did you feel heard and understood by the palliative care team?”, a PRO measure identified by AAHPM and 2. “Would you recommend palliative care to another patient/ family?”, inspired by a question in children's hospital surveys (3,5).

Results

Fifteen of 32 enrolled sites (47%) provided at least one cycle of data, averaging 6.5 cycles per site. A total of 2496 eligible patients were identified with 1657 patients and/or families (66%) surveyed about their experiences. 328 participants (20%) responded with a monthly response rate ranging from 9% to 35% collectively across all sites. Most patients and families felt heard and understood (96%) and would recommend palliative care (93%).

Conclusion

Assessments of patient and family experiences with PPC are feasible and informative. PRO data can help ensure that PPC services are meeting their patients and families’ needs, identifying opportunities for improvement, and demonstrating value to advocate for program growth.

References

1. Currow DC, Davidson PM, Higginson IJ. “Outcomes” is not an oxymoron in hospice/palliative care. Journal of Palliative Medicine. 2016;19(11):1128-1129-1129. doi:10.1089/jpm.2016.0427 2. Harding R, Wolfe J, Baker JN. Outcome Measurement for Children and Young People. Journal of Palliative Medicine. 2017;20(4):313. doi:10.1089/jpm.2016.0525 3. National Coalition for Hospice and Palliative Care. 2019. Available from: https://www.nationalcoalitionhpc.org/qualitymeasures/. Accessed September 15, 2022. 4. Palliative Care Quality Measures Project. Implementation Guide. 2022. Available from http://aahpm.org/uploads/AAHPM22_PRO-PM_IMPLEMENTATION_GUIDE.pdf. Accessed September 15, 2022. 5. Agency for Healthcare Research and Quality. CAHPS Child Hospital Survey. Available from: https://www.ahrq.gov/cahps/surveys-guidance/hospital/about/child_hp_survey.html. Accessed September 15, 2022.