Standard Implementation of a Palliative Care PRO-PM: Lessons from Pediatric Palliative Care

Authors: Emma Jones, MD, FAAP, FAAHPM and Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM

As highlighted by Dr. Eric Goodlev in his April AAHPM blog post, the “Palliative Care Measures Project” produced two novel patient-reported outcome performance measures (PRO-PMs) focused on the needs of palliative care patients. The first measure regards how much a patient “Felt heard and understood” by the palliative care team, and the second measure regards how much a patient “Received the desired help for pain” from the palliative care team. Since the blog post was published, both measures have received endorsement from the National Quality Forum. In this blog post, we are excited to share how one of these PRO-PMs has been standardly measured by pediatric palliative care teams in the Pediatric Palliative Improvement Network (PPIN). 

PPIN – An Engine for Rapid Change

PPIN is a healthcare learning collaborative with more than 150 members representing 50+ pediatric palliative care programs across the US.1 The group was formed in 2016 with a global aim of building a sustainable network to improve the outcomes of care for children receiving palliative care. Since inception, we have hosted 2 live and 2 virtual Quality Improvement (QI) training workshops, with more than 300 attendees trained in QI methods. Our community meets monthly via zoom; the agenda typically includes a knowledge boost in QI methods, a compassion boost to keep people motivated, presentation of a work in progress, and updates regarding collaborative projects.

In 2019, PPIN members were surveyed regarding preferences for the next collaborative project. Four possibilities were prioritized: advance care planning, transitioning patients to hospice, safe opioid prescribing, and family satisfaction evaluation. A national collaborative project involving standardized family satisfaction surveys was the prevailing priority. Family satisfaction surveys used by multiple palliative care teams were compared, common questions identified, and the American Academy of Pediatrics Section of Hospice and Palliative Medicine and PPIN list serves were surveyed to rank potential questions. The result was a consensus item set available for use by all programs, to enable comparison of family satisfaction data across sites and benchmarking of responses. Due to the pandemic, work on this project was stalled until January of 2022 when we initiated our current collaborative project, under the leadership of Dr. Ashley Autrey from Children’s Hospital of New Orleans.

Integration of “Did you feel heard and understood” PRO-PM into the PPIN Collaborative Project

As PPIN planned our collaborative project for rollout in 2022, the two palliative care PRO-PMs were published by AAHPM. Although they had not yet received NQF endorsement and were not developed specifically for use in pediatrics, there is emerging evidence that both of these measures closely align with parent priorities for quality measures in children eligible for palliative care.2  PPIN members prioritized including the question “To what extent did you feel heard and understood by the palliative care team” in our standardized family satisfaction questionnaire, as it was felt to be applicable for use by all palliative care teams, including those who do not provide significant pain management to patients. Demonstrating feasibility of standardly evaluating this PRO across pediatric sites and describing what challenges might be faced by palliative care teams desiring to implement these items, became sub-aims of the collaborative project.

The project started in January of 2022 with 32 programs enrolling for participation. As of August 2022, 12 programs have sent at least one round of surveys to patients, with response rates averaging 19% for all sites over the past 8 months. The “heard and understood” metric was included using a 5-point Likert scale, similar to the format in the validated measure. The percentage of responses of 4 (agree) or 5 (strongly agree) are tracked across sites. Aggregate responses of 4 or 5 have ranged from 50% to 100% across sites, with a total average score of 97% of respondents agreeing or strongly agreeing that they felt heard and understood by the palliative care team.

Barriers, Successes, and Learnings of Using this PRO-PM

Many of the pediatric palliative care programs that have created reliable systems for surveying their patients and families are relatively small compared to other pediatric divisions. A perceived benefit of operating in a small team is that it allows flexibility and agility in creating and adapting systems that are tailored to the needs of the palliative care team when seeking to collect patient-reported data. Further, pediatric palliative care teams are not expected to report safety and quality data to the system in the same way that other teams (e.g., surgery or oncology) may be. This again allows the team to focus on collecting metrics that matter most to the team and to their patients. Teams that have been successful in surveying patients and improving response rates have in common that they are highly motivated to receive and interpret patient-reported data to improve care. Yet this work is time intensive. Teams that have dedicated staff who can focus on the project as part of their role are better positioned to reliably send surveys, gather and analyze the data, and utilize QI methods to improve response rates and satisfaction concerns by patients. Finally, some health systems prohibit use of non-standard satisfaction questionnaires by individual teams which has been a major barrier to collecting patient-reported data in some cases. Generally, though, we have found that the vast majority of respondents agree or strongly agree that they feel heard and understood by their pediatric palliative care teams, indicating the provision of high-quality palliative care across participating programs.

What We Would Love to See Next

In PPIN, the next step of our collaborative project is to collaboratively improve the aggregate response rate to our surveys to >30% across participating sites over the next six months. We are thrilled that so many respondents felt “heard and understood” by our teams and encourage PPC program leaders to use similar satisfaction data to help advocate for program growth and demonstrate the value of PPC in the larger system. PPIN offers a community in which individual teams with lower average scores on this question can brainstorm ways to improve responses, alongside improving responses to other questions that may be meaningful in unique contexts. Some teams initially “rolled out” surveys only to inpatients and are now expanding their system to survey outpatients too; others are tailoring survey questions to the needs of unique patient cohorts (i.e., individuals receiving perinatal palliative care). Broadly, one of the goals of the Palliative Care Quality Collaborative is to create a healthcare learning network to offer similar collaborative opportunities across the field of both adult and pediatric palliative care. PPIN, with our focus on QI education and collaborative projects, provides an early iteration of how this could look. Some learning health networks offer opportunities for patients with specific diseases to access their personal outcome data in quality registries, to compare their outcomes to those of other patients, and to provide direct feedback to their care teams! As quality measurement for palliative care patients evolves, we would love to see opportunities like this develop for our patients and for their families.

  1. Thienprayoon R, Jones E, Humphrey L, Ragsdale L, Williams C, Klick JC. The Pediatric Palliative Improvement Network: A national Healthcare Learning Collaborative. Journal of pain and symptom management. 2022;63(1):131-139.
  2. Ananth P, Mun S, Lindsay M, et al. Parent Priorities in End-of-Life Care for Children with Cancer. Journal of pain and symptom management. 2022;63(5):885.

AAHPM is tracking where and how the new measures are used. If you intend to implement “Feeling Heard and Understood” and/or “Help Wanted for Pain,” please complete this short 5-minute survey to tell us more about how you intend to use the measures. We will follow up with you over the next 12-24 months to learn more about your experience with implementation.

Survey of Intent to Use Palliative Care Quality Measures

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