Measuring pediatric palliative care quality: Challenges and opportunities

Abstract

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.

Background

Although pediatric palliative care (PPC) is well-established in many U.S. hospitals (1) and, increasingly, across the globe, PPC programs vary widely in structure, staffing, funding, and patient census (2). As a result, there is considerable inconsistency in the services offered across providers and programs (1-6). This lack of consistency has far-reaching consequences for the more than 21.6 million children worldwide living with serious illness and their families (7), potentially heightening child symptom burden, diminishing child and family quality of life, and further affecting communication, satisfaction with care, family bereavement outcomes, and healthcare utilization (8-14). Coordinated efforts across providers, settings of care, and geographic areas to evaluate and improve PPC quality are urgently needed.

Fundamental first steps toward improving quality of PPC for children and families include systematically measuring care quality, ensuring that quality measurement is embedded in clinical practice, and aligning quality measurement with child and family priorities, as well as with healthcare policy priorities (4, 15, 16), such as the Affordable Care Act (17) and the Medicare Access and Children’s Health Insurance Program (CHIP) Re-Authorization Act (18). Quality measurement serves, at a minimum, four distinct purposes: a) to ensure accountability of providers and programs, including public reporting, reimbursement, and accreditation/certification (19-24); b) to guide quality improvement (QI) initiatives within and across programs or institutions (19, 20, 25); c) to develop or produce new knowledge within healthcare research (22); and d) to inform clinical decisions at the patient and family or program level (26, 27) (Figure 1). Ultimately, the goal of quality measurement is to improve child and family outcomes, such as quality of life, and care experiences (23, 24).

Figure 1:

Purposes of quality measurement in PPC (19-22, 137-139)

Quality measures are typically defined as relevant, actionable, feasible, and scientifically acceptable “tools that help us measure or quantify healthcare processes, outcomes, patient perceptions, and organizational structure and/or systems that are associated with the ability to provide high-quality health care…” (28) (Table 1). Notably, while palliative care quality frameworks and clinical practice guidelines provide an overarching perspective from which to understand PPC quality (15, 16, 29-31) (Table 2), when using quality measures, PPC stakeholders must additionally define the eligible population(s) (denominator) and rules for determining when care aligns with best practices (numerator). Furthermore, stakeholders should optimally define rules for quality measure interpretation, or what benchmark (numerator/denominator) is considered high-quality care for a group of patients, and if that benchmark should be different for different groups of patients, such as children with cancer versus children with advanced heart disease, or across different healthcare settings (27, 32, 33).

Table 1:

Key characteristics of quality measures (23, 137-139)

Characteristic	Definition
Importance and relevance	Aligned with health system, provider, patient and family, payer, or policy maker priorities Should be in areas where measuring can make a positive impact on care quality
Usability and actionability	Should address aspects of care that are improvable by clinicians and by health systems Depending on the purpose, should be usable by providers, researchers, purchasers, policy makers, or consumers (i.e., patients and families)
Feasibility	Should be easily integrated into day-to-day clinical practice Should not be burdensome on clinicians or health systems to collect Should not be burdensome for patients and families to provide Should be in areas where data is available or obtainable for measurement
Scientific acceptability	Should produce consistent (reliable) and credible (valid) results about care quality

Table 2:

Existing frameworks and clinical practice guidelines for high-quality pediatric palliative care

Framework or Guideline	Description
National Consensus Project Clinical Practice Guidelines for Quality Palliative Care	Guidelines for evidence-based processes and practices to improve access to quality palliative care for adults, children, and families living with serious illness in all care settings (29).
American Academy of Hospice and Palliative Medicine Commitments, Guidelines, and Recommendations	A statement regarding the core commitments of an integrated model of pediatric palliative and hospice care, as well as twelve guidelines and recommendations for high-quality care based on published observational studies, expert opinion, and consensus statements (16).
The Initiative for Pediatric Palliative Care Quality of Care	A document containing six quality domains for enhancing family-centered care of children living with life-threatening conditions, as well as nine goals and 41 indicators for determining progress toward each of these domains (31).
National Hospice and Palliative Care Organization’s Standards of Practice for Pediatric Palliative Care: Quality improvement resource	An addendum to the National Hospice and Palliative Care Organization (NHCPO)’s 2022 Standards of Practice for Hospice Programs. These standards serve as a resource guide for hospice and palliative care organizations serving infants, children, adolescents, and families, regardless of care setting. These standards additionally “define programmatic elements and standards which, if uniformly implemented, would ensure that programs for children with life-threatening conditions and their families provide the best care available” (15, 140).

Rapid growth in the field of PPC over the past two decades has far outpaced the ability to measure the quality of PPC provided, hindering our ability to comprehensively and equitably assess and improve PPC quality for children and families. In this paper, we describe key challenges to quality measurement in the field of PPC, including a) defining measurement priorities, b) using existing quality measures, c) adapting or developing new quality measures, d) implementing quality measures, and e) adopting quality measures. We also delineate current quality measurement initiatives and propose strategies that patient and family advocates, researchers, clinicians, program administrators, payers, and other stakeholders could consider for advancing quality measurement in PPC.

Challenges to Quality Measurement in PPC

Defining measurement priorities

Improving PPC quality depends first and foremost on defining what constitutes high-quality PPC and, thus, what to measure for children and families with differing needs, values, and circumstances (4, 34). Importantly, the voices of populations most impacted by quality measurement should be included in priority setting (35). Recent studies have been conducted to identify measurement priorities directly with patient, family, and clinician stakeholder groups in various settings, and for children with distinct diagnoses living in different countries (30, 31, 36-43). However, there continues to be an overall lack of diversity among stakeholder groups involved in priority setting, as well as a lack of consensus across the field regarding which measures are most important for assessing PPC quality (19, 33, 34, 36, 42, 44-47). PPC quality frameworks and clinical practice guidelines offer a foundation for thinking about what constitutes best practices and high-quality care in PPC (Table 2) but do not provide sufficient detail regarding what and how to operationalize these measures. While systematic reviews of PPC quality measures have highlighted the range of quality measures used in the field, there is substantial variability in how measures are defined and a focus on structure, processes, or outcomes that are easiest to measure (e.g., location of death, hospital admissions, presence of PPC team), rather than those that may be perceived as most important by children and families (e.g., quality of life or goal-concordant care) (42, 48, 49), particularly children and families from diverse communities.

Using existing PPC quality measures

Recent scoping reviews of quality measures used to evaluate the impact of PPC or the quality of dying, death, and end-of-life care for children and young people found that the most commonly used measures included location of death and healthcare utilization; indeed, many measures simply assessed where the child died, rather than if discussions about location of death occurred while the child was alive or if the child died in their or their families’ preferred location (42). Importantly, although PPC is recommended from the time of diagnosis of serious illness through a child’s death and into family bereavement (4, 15, 16), most measures focused solely on care provided in the last weeks to months of life or on care perceptions after the child’s death, limiting the ability to assess PPC quality over the often lengthy trajectory of a child’s illness (42, 49). Additionally, most studies incorporated the perspectives of parents or providers and few incorporated the ill child’s or siblings’ perspectives in understanding care quality, which may limit the ability to comprehensively evaluate the impact of PPC (42, 48, 49).

PPC quality measures are also often intended for populations of children with specific diagnoses (e.g., cancer) (37, 39, 48, 50-54), developed with patients and families from homogeneous demographic backgrounds (e.g., race, ethnicity, educational attainment, socioeconomic status) (9, 53, 55-58), and focused on one aspect of care (e.g., cost of care or healthcare utilization) (53, 56, 59-61) or from one stakeholder perspective or data source (e.g., parent, health professional, administrative data) (43, 55, 61-66). Taken together, the singular focus of many quality measures limit the holistic evaluation of PPC quality and the ability to compare outcomes across programs (61).

From a methodological standpoint, existing PPC quality measures are often used without adequate consideration of the psychometric properties and responsiveness of measures (48, 49). For example, PPC quality evaluation and improvement studies often use retrospectively administered, non-validated instruments, including program-specific satisfaction surveys completed by bereaved parents (56, 58, 67). Although these surveys can provide valuable information about PPC quality for clinicians, administrators, and researchers, there are limitations to their use in quality measurement. For example, some surveys may be completed more than a year after the child’s death, thus potentially introducing recall bias (68). These measures also only provide information about care quality at a single point in time, which limits the ability to inform treatment decisions and care improvements in real-time for children and families currently receiving care, as well as the ability to inform care for future children and families if aspects of care provision have subsequently changed (21). Caregiver surveys focused on assessing satisfaction may also be prone to ceiling effects, where scores are often skewed toward higher levels of satisfaction. Specifically, factors intrinsic to respondents, like sociodemographic characteristics (e.g., age, sex), personal characteristics (e.g., values, attitudes, knowledge, past experiences, expectations), social desirability, and a child’s perceived health status, may strongly influence satisfaction ratings (69-73). External factors, such as hospital or health system characteristics and societal values may additionally impact satisfaction ratings (70, 71). As a result, satisfaction surveys are often criticized for not being sufficiently responsive to variations in care quality (74), rendering it challenging to use data from these surveys to directly improve care.

Adapting or developing new quality measures

Adapting measures.

While quality measures have been developed and validated for adults with serious illness and their caregivers, these measures do not always directly translate to the care of children. Developmental differences between children and adults, with considerable variation among children of different ages and with different disabilities, as well as fundamental differences in care needs, may impact the transferability of measures (33, 42, 46-48, 55). For example, children experience many rapid developmental changes during infancy, childhood, adolescence, and young adulthood, which may impact the validity and relevance of adult-developed quality measures in pediatrics (23). Additionally, children typically have a caregiving network of parents, siblings, extended family members, and friends who may be deeply involved in their care and should be considered when evaluating care quality (16, 33, 75).

Furthermore, uncertain illness trajectories in pediatrics may affect the assessment of care quality. For example, home death has traditionally been used as a quality measure in adult palliative care, yet is not universally supported as a measure of PPC quality due to differences in children’s and families’ goals of care; limited resources to support children and families at home, including hospice; and a wide variety of pediatric serious illnesses, some of which are extremely rare and challenging to prognosticate (16, 33, 37, 76, 77). Whereas adults typically receive palliative care for a relatively short time (78), children may have palliative care needs and require palliative care for years, or even decades, prior to their death (79). Thus, how we measure quality of care in pediatrics is, and should be, distinct from measurement in adults (33, 61, 80).

Adapting general pediatric measures, or measures developed for otherwise healthy children without serious illness, to a PPC context poses additional challenges (57). For example, a highly valued outcome across pediatric healthcare is survival, or maximizing years of life. This outcome may not be relevant to some children with serious illness, who may be expected to die during childhood as a result of their illness. Another widely used general pediatric instrument is the PedsQL, which assesses quality of life in children (81). This instrument was initially developed for healthy children and adapted for several specific illnesses but has limited construct validity in some populations of children with serious illness (57, 82). For example, items like walking a block or running are not suitable for children who ambulate with a wheelchair (57). Additionally, items that may be important to children with serious illness and families, such as relief of physical symptoms or advance care planning, may not be represented within generic measures (57). Hence, such instruments employed in general pediatrics should be further psychometrically evaluated and adapted for use in the PPC context.

Developing new measures.

Measure development is often dictated by availability of data and ease of measurement, rather than by importance of the measure (4, 16, 42), biasing measurement towards areas where data are robust and easily obtained and potentially neglecting important areas where data are scarce or challenging to collect (30). Rather, measure development should balance practicality with importance to patients, families, and other stakeholders (21, 30). Claims data offer population-level information on quality, are readily accessible, and may overcome issues with recall and response bias inherent in survey data (12, 60). Yet, many core domains of high-quality PPC are not easily evaluated using retrospective claims data. In particular, claims data lack the context that is gained from patient- or family-reported outcome and experience measures, such as whether or not the care provided was aligned with patients’ and families’ goals of care (21). Machine learning approaches in the electronic health record (EHR) are increasingly being employed to assess care quality (83), but such approaches are fundamentally limited to encounters that occur in hospitals or clinics with robust, interconnected EHRs. Consequently, care that occurs in the home, in hospice, or that transitions across settings may not be readily captured through current machine learning methods.

High-quality PPC that is tailored to the unique needs of individual patients and families can be nuanced. Given that simplified, standardized approaches to quality measurement may be insufficient to capture what is defined as high-quality PPC, and resource-intensive approaches like chart abstractions and survey methods may not be attainable in some situations or circumstances, a balance of population (e.g., administrative claims data) and program level (e.g., EHR data, patient and family surveys) approaches should be considered when developing new measures. Future measure development efforts that include prospective, longitudinal aggregated clinical and administrative data that can be transformed rapidly and efficiently into “usable knowledge” are urgently needed (21).

Measure developers should also consider from whom we are collecting data about PPC quality. Patient report is considered the gold standard in both clinical and quality assessment (61, 84, 85), and the voices of children in PPC quality measurement is often missing (42). New measures should aim to collect data directly from the patients themselves; however, when a child is unable to self-report, as with younger children, children with some neurological disabilities, or children who are near the end of life, these measures should also allow for family caregivers to respond as proxies (86). Additionally, there is ongoing debate about the congruence between child and parent reports (87-89) and whether parents’ distress may influence reports of their child’s suffering (87). Thus, development of different versions of instruments to account for varying ages, developmental stages, and proxy reporters may be needed to ensure that the voice and needs of patients and families are thoroughly gauged.

Incorporating a health equity lens.

Increasingly, disparities in PPC for children with serious illness based on race, ethnicity, language, and socioeconomic status have been documented (90-93). Less evidence exists for disparities in PPC in other historically marginalized or excluded populations, such as sexual and gender minorities, although the literature in adult palliative care suggests that sexual and gender minority adult patients and their caregivers often experience discrimination and disparate access to high-quality palliative and hospice care. (94, 95) While foundational steps have been taken to understand PPC disparities (90, 96-100), few quality measures evaluate or account for the magnitude of these care disparities, even though quality measurement has been described as an “essential yet underused tool for advancing health equity” (101).

Developing quality measures that advance health equity in PPC is therefore an international imperative for several reasons (61, 101, 102). First, robust equity-centered measures permit the monitoring of health disparities to identify historically marginalized or excluded groups that may experience barriers to care or are receiving lower-quality care (101). For example, studies have identified differences in intensity of end-of-life care and goal-concordant care (90, 91), as well as in prognostic communication and perceived understanding of prognosis (100, 103), among children and families from historically marginalized groups (90, 100, 104). Second, measures may help ensure that clinical care does not exacerbate disparities and further exclude already marginalized groups (101). For instance, a quality measure of avoidance of cardiopulmonary resuscitation at the end of life may not be equally preference-sensitive to all cultural or religious communities (105, 106). Additionally, a measure assessing quality of communication should “account for and capture the sequelae of healthcare racism, microaggressions, and stereotype threat” that may exist between historically marginalized or excluded groups of patients and clinicians (107). This may require a shift away from quantifying the relationship between risk factors for disparities and individual-level outcomes; rather, measures should strive to account for the underlying causes of disparities in care (e.g., systemic racism; discordance between patient and clinician race, ethnicity, language, or culture) and to explore how these disparities affect care quality (105, 107-111). Third, measures allow clinicians, researchers, administrators, and policymakers to assess the impact of interventions intended to reduce disparities in care (101, 108). Fourth, the overwhelming majority of quality measurement and improvement efforts in PPC occur in high-income countries, whereas almost 98% of PPC needs for children worldwide occur in low- and middle-income countries (7, 112).

Taken altogether, it is important that measures are developed in consideration and inclusive of the voices, cultures, languages, communities, and local and historical contexts in which measures are intended for use (61). The development of measures that address care disparities and the exploration of whether these measures can be appropriately implemented in specific local contexts, such as resource-constrained settings or within historically marginalized communities, is imperative for advancing health equity in PPC.

Challenges with implementing quality measures

Identifying the denominator.

The population, or denominator, of children who are included in PPC quality measurement may vary across research studies or clinical programs, impacting interpretation of measures and comparisons of resultant data. In other words, when programs report on the quality of PPC they provide and benchmark care quality across programs, it is essential that programs are indeed measuring the same population to ensure meaningful comparisons across programs. For example, a recent study suggests that algorithms such as the pediatric Complex Chronic Conditions Classification System (76), the Pediatric Medical Complexity Algorithm (113, 114), and the Children with Disabilities Algorithm (115) can identify children at greater risk for high healthcare utilization and in-hospital mortality. However, each algorithm can yield different patient groups and estimates of the magnitude of healthcare utilization and risk of in-hospital mortality (116). These different risk estimates could potentially underestimate, overestimate, or exclude some groups of children from critical analyses, programs, or policies (116); therefore, careful consideration of the population of children to be evaluated when implementing any quality measure is essential.

Unintended consequences of PPC quality measurement.

Another implementation challenge is the impact that using the measure itself has on quality of care (16, 117-120). Goodhart’s Law is the idea that, “When a measure becomes a target, it ceases to be a good measure” (121). In other words, when a quality measure is targeted, clinicians may modify their behavior in response in a way that negatively impacts the credibility of the measure itself, and, importantly, the care patients receive. For example, measures of high-quality palliative care may include death at home or spiritual counseling, which may incentivize providers to automatically encourage patients to be discharged home for the end of life or to consult spiritual care services. Yet, for some children and their families, home may not be the desired location of death or spiritual counseling may not be wanted (16, 117). Use of measures prioritizing these practices could lead to undesired care for some families. Alternatively, surgeons may refuse to operate on a child with Trisomy 13 or 18 due to a concern about the impact on 30-day mortality rates if the child were to die in this period of time after surgery (118), even when there may be individual patient benefit and such care would be goal-concordant for the family. Thus, quality measurement has the potential to incentivize practices that are not universally preferred by individual patients and families.

Furthermore, the impact on patient outcomes of publicly reporting healthcare quality remains unclear (120, 122, 123). Indeed, while some evidence exists that public reporting may lead to quality improvement activities at the hospital level (123), other evidence suggests that public reporting has the potential to lead to increased disparities in healthcare (119). The ways in which the application and public reporting of measures might influence patient care should be carefully considered when implementing PPC quality measures. We must further acknowledge that benchmarks may not be uniformly concordant with the individual preferences of each patient and family and could further exacerbate healthcare disparities.

Challenges in quality measure adoption

Endorsement.

For measures to truly impact PPC quality, they should be widely adopted and integrated into the administrative, funding, and policy landscape of pediatric healthcare (124, 125). Endorsement by the National Quality Forum (NQF) and other prominent organizations is considered an important step in measure adoption. NQF partners with the Centers for Medicare and Medicaid Services to guide the U.S. Department of Health and Human Services in selection of healthcare quality measures to be used for public reporting and performance-based payment programs (126). However, the NQF measure adoption process is extensive, including a high bar for the quantity and quality of evidence required for a measure to be endorsed (127). While the NQF has endorsed numerous quality measures for adult palliative and end-of-life care, there is a dearth of formally endorsed measures for children with serious illness. PPC serves a relatively small number of children, and the evidence required for endorsement is necessarily derived from studies with limited sample sizes (33). Nevertheless, the adoption of NQF-endorsed measures of high-quality PPC is important to help programs move away from traditional fee-for-service reimbursement models, which often excludes reimbursement for services provided by some essential interdisciplinary PPC providers, toward value-based payment models that may more fairly reimburse PPC programs for the care provided. Ultimately, these value-based payment models may enable PPC program growth, allowing programs to better support children and families. Continuing to develop the evidence base for PPC quality measures is therefore an essential step in achieving formal endorsement and may require greater investment from federal agencies to fund this work. Furthermore, agencies should consider if different requirements may be necessary for quality measure endorsement in pediatrics, such as a stronger consideration of expert opinion rather than reliance on evidence from clinical trials alone.

Cross-cutting measures.

Another challenge to the widespread adoption of PPC quality measures is the distinction that is often made between primary and specialty PPC. Currently, much of the work in palliative care quality measures has been focused on specialty palliative care (in adults) and pediatric oncology. Yet, the same measures are likely to be widely applicable to any child with a serious illness, whether or not specialty PPC is available. Children with serious illness who receive care in locations without specialty PPC should still receive high-quality palliative care through primary, or non-specialty, palliative care efforts. Therefore, the quality of care provided by primary practitioners to children with serious illness should likely include the same benchmarks as those used by specialty PPC providers (128). For example, pediatric oncologists may primarily manage pain in children with cancer, thereby providing primary PPC to those patients in the area of symptom management; therefore, quality measures evaluating pain assessment and treatment that are developed for use by specialty PPC clinicians could also apply to pediatric oncology clinicians caring for children with cancer. As another example, neonatologists may guide families in goals of care discussions for infants, and quality measures focused on goal-concordant care or communication may be applicable.

Human resources.

Finally, a significant challenge to measure adoption is the human resources required to implement PPC measures. PPC programs are frequently understaffed and may not have the bandwidth to integrate the routine tracking and reporting of PPC quality measures into their day-to-day clinical practice. The EHR, however, offers an opportunity for enhanced efficiency with measure adoption. In particular, EHR workflow should be carefully designed to allow for consistent adoption of measures, clinical documentation that facilitates simultaneous tracking of measures that can be used for on-demand feedback for specific measures, and the ability to routinely and efficiently send data to national registries, such as the Palliative Care Quality Collaborative database, described below (21). Consistent, prospective measurement and reporting of PPC quality measures can create a program culture built on continuous QI efforts to enhance care for all children with serious illness.

Proposed Solutions: Current Initiatives to Improve Quality Measurement in PPC

Despite the challenges to PPC quality measurement that we have highlighted, healthcare professionals, researchers, programs, and funding agencies have made important strides toward addressing these challenges in concrete ways.

The Cambia Metrics Project

The Cambia Metrics Project, supported through a grant from the Cambia Health Foundation (Portland, OR), aimed to develop and disseminate hospital-based primary PPC quality end-of-life measures that could be routinely abstracted from the EHR without manual review. The rationale for developing EHR-derived measures was to increase the potential feasibility of the measures as a tool for busy clinical pediatric centers and teams (21).

This project followed a modified Delphi approach (129) for measure development that involved a comprehensive literature review of over 200 existing adult and pediatric measures, which were then reviewed by a multidisciplinary expert panel to develop a set of 20 candidate quality measures. Candidate measures were sent via a national survey to stakeholders in PPC QI, leadership, and research organizations, to assess each quality measure’s importance and abstraction feasibility. Key stakeholders were also offered the opportunity to propose new measures. The final measures endorsed by the expert panel included a total of 17 quality measures across five core domains: healthcare utilization, interprofessional services, medical intensity, symptom management, and communication (36).

During the measure development process, survey participants and expert panelists highlighted the tension between feasible and meaningful process and outcome measures. For example, while what is most important to measure may include goal-concordant care and patient or parent-reported outcomes (37, 46), these measures were considered to be extraordinarily difficult to implement. Additionally, capturing data regarding hospital-to-community or home hospice care transitions was another common concern (36). These challenges remain vitally important to address in future work.

PPC What Matters Most Study

An international effort to develop a core set of measures of high-quality PPC is currently under way (130). This project will draw on the expertise of children with serious illness and their families, as well as clinicians, researchers, and decision-makers in PPC, through both a Delphi process and a discrete choice experiment, to create a core set of 15-20 measures in approximately five to seven domains of care. The vision for this core set of measures is that it will be applicable across programs, countries, disease groups, settings of care, and illness trajectories, and will include a mix of patient- and family- reported outcomes along with measures that may be collected through administrative data or health record review.

Collaborative learning networks: The Pediatric Palliative Improvement Network and the Palliative Care Quality Collaborative

The Pediatric Palliative Improvement Network (PPIN) is a collaborative healthcare learning network which improves the quality of PPC delivery through a focus on standardized national QI methods training, national QI projects, and the creation of a peer support community that meets regularly (131). PPIN has offered two in-person “QI Methods” workshops and, since COVID, two “QI Basics” webinars as standardized QI educational opportunities for the field. These events have provided continuing education credits and to date, approximately 200 PPC clinicians have taken advantage of at least one training event. PPIN has additionally provided infrastructure for two national collaborative projects. The first project involved 24 programs and demonstrated improvement in pain assessment at initial PPC consultation from 75.8% to over 90% collectively over 15 cycles between 2017 and 2019 (131). The current project is standardly integrating the first palliative care-focused patient-reported outcome measures, developed as part of the Palliative Care Measures Project (132), into PPC patient surveys. Approximately 30 PPC programs are participating in this project, which will be completed in 2022. The data gathered will be used for local programmatic development, as well as national benchmarking of PPC patient-reported outcome measures.

The Palliative Care Quality Collaborative (PCQC) is one of the first coordinated organization- and patient-level quality registries for palliative care (133). Formed in 2019 through the integration of three ancestral national palliative care registries (134-136), PCQC was created to be the unifying organization for collaborative quality measurement and improvement activities in the field. PCQC has traditionally focused on quality measures developed for adult populations; however, many PPIN programs were early members of PCQC and participated in the development of the data dictionary to ensure the inclusion of PPC-focused metrics. PPC representation in PCQC has consistently increased since the organization was founded. The standardized point-of-care patient and programmatic data shared within PCQC create critical opportunities for collaborative research and QI efforts across the field of PPC, with the goal of ultimately enabling clinicians nationwide to improve the quality of PPC delivered to all patients and families (131).

Future Directions for Measuring Quality of PPC

Attaining excellence in PPC – that is, providing high-quality care to all children with serious illness and their families – is possible. While significant strides toward addressing the challenges that exist within PPC quality measurement have been recently made, more work remains. The goal of providing high-quality PPC to all children and families will require a multi-pronged approach, starting with standardizing how success is defined by patients, families, and other diverse stakeholders in PPC. Improving care quality will require evaluating how we use existing quality measures in the field, thoroughly adapting measures from other related fields, and developing new scientifically valid, reliable, and actionable quality measures that are sensitive to care disparities within PPC. Additional work is required to increase our understanding of how child-reported outcome measures can inform the comprehensive assessment of care quality (15, 31). When developing and implementing quality measures, we need to be thoughtful about the population of children we are evaluating and inclusive of the voices of the communities for which measures are intended, as well as mindful of the unintended consequences of quality measurement and public reporting. We also should improve the infrastructure with which to routinely measure, monitor, and report integrated clinical and administrative quality measures within and across PPC programs, longitudinally and in real-time. Lastly, we need to increase the adoption and integration of PPC quality measures into the administrative, funding, and policy arenas of pediatric healthcare. This starts with the endorsement of PPC quality measures by international quality organizations like the NQF, as well as the adoption of measures by all primary and specialty PPC providers who care for children living with serious illness.

Ultimately, quality measurement is a crucial step in our pursuit to achieve the highest quality PPC for all children and families; indeed, it is critical for our understanding of where interventions, programs, research, funding, and policies to affect the quality of care are “most needed and most likely to be beneficial” (30). Quality measurement provides the foundation upon which future QI efforts in PPC will be made. Only by addressing challenges to defining, developing, implementing, and adopting quality measures in PPC can we begin to comprehensively and equitably improve the care we provide to all children with serious illness and their families.

Key Message:

While challenges exist in PPC quality measurement, important strides toward addressing these quality measurement challenges have been made. More work remains to integrate PPC-specific quality measures into pediatric healthcare delivery, funding, and policy. Strategies integral to these efforts are discussed in this paper.