Subspecialty pediatrics: An unmet opportunity to address unmet social risks

Children living with medical complexity (CMC) comprise about 5% of the US pediatric population. CMC often require frequent healthcare contacts, multiple medications, in-home healthcare, or complex care coordination. Morbidity and mortality for these children vary dramatically across racial and socioeconomic groups:^1–3 children from historically minoritized communities are at increased risk for disease complications and death.^2,3 CMC have complicated treatment regimens, work with multiple medical teams, and can incur high medical expenses even when they have health insurance. Socioeconomic adversity makes already complex care even more challenging.

While strengthening the medical home remains an important priority for CMC,⁴ relationships with subspecialists offer opportunities to mitigate challenges at the intersection of health and socioeconomic adversity that are often faced by families caring for CMC. Frequent interactions mean CMC and their families build deep, trusting, and longitudinal relationships with subspecialists that exist in parallel with primary care provider relationships. Indeed, some patients are in contact with their subspecialists even more frequently than with their primary care clinicians, with one study finding that roughly 40% of CMC with Medicaid insurance did not see a primary care physician in the past year.⁵ Moreover, primary care pediatricians report varying levels of comfort caring for CMC, with 60% reporting in one study that they would not want to add additional children and youth with special health care needs into their practice.⁶ Subspecialists also often have critical experience navigating disease-specific social hurdles that pose barriers to navigating care for CMC. Together, these factors highlight the important role subspecialists could play in addressing families’ social risks (e.g., food insecurity) in ways that supplement primary care-based social care activities.

Despite their unique positioning, subspecialists have not been directly charged with the responsibility of screening for or responding to families’ social risks. The American Academy of Pediatrics recommends social risk screening in pediatric primary care but does not comment on screening in subspecialty settings.⁷ The complex care needs experienced by CMC exacerbate socioeconomic adversity, underscoring the need for greater social care in subspecialty pediatrics. For example, in one study of children with cancer, the authors found that about a third of households had material hardship one year after completion of chemotherapy, which had increased substantially from the baseline assessment at diagnosis.⁸ Moreover, in a report written by parents of CMC, the authors highlight that the primary care medical home remains out of reach for many CMC, underscoring an opportunity for social care delivery in subspecialty settings.⁹ In this paper, we use a framework for patient-care related social care activities defined by the National Academies of Science, Engineering, and Medicine (NASEM)¹⁰ to propose a more comprehensive approach to social care that intentionally involves subspecialty care teams and strengthens interdisciplinary communication with primary care to better meet the long-term needs of CMC and their families.

THE NASEM Social Care Framework

In 2019, the NASEM committee on Integrating Social Care into Healthcare Delivery to Improve the Nation’s Health described three domains of patient care-related activities (awareness, assistance, and adjustment) that can be integrated into care to strengthen social care delivery (Table 1). Two additional activities described in the 2019 NASEM report, alignment and advocacy, are primarily aimed at strategies for healthcare systems to intervene by investing in social and economic opportunity at the community level. These are also essential roles for pediatric providers and likely to contribute to durable improvements in the health of the broader pediatric population, but may be less relevant to subspecialty pediatricians, who often see patients from wide geographic catchment areas. Awareness involves identifying the social risks and assets of patients and their families. There are two patient-care intervention categories: assistance and adjustment. Assistance involves providing social services resources in response to identified social risks (e.g., taxi vouchers when patients describe transportation barriers). Adjustment involves changing clinical follow up care and treatment to mitigate the impacts of identified social risks (e.g., offering care via telehealth rather than in-person for patients with transportation challenges). Applying these social care recommendations in pediatric subspecialty settings will require several important changes. Subspecialists can play a critical role in both implementing and evaluating these social care activities.

TABLE 1.

National Academies of Science, Engineering, and Medicine 5A Framework with examples of social care activities

Level	Activity	Definition	Example
Patient Care-level	Awareness	Understanding a patient’s/household’s social risks and assets	Routine social risk screening in subspecialty clinics
	Assistance	Providing assistance for identified social risks	Helping families navigate the complexities of filling compounded medications (e.g., liquid immunosuppression)
	Adjustment	Adjusting care to mitigate impact of identified social risk	Changing medication regimen to avoid compounded medication
Systems-level	Alignment	Investing in local communities to improve health outcomes	Partnering with specific pharmacies to streamline prescription refills
	Advocacy	Partnering with organizations to reorganize resource delivery	Working with insurance companies to improve compounded medication refill process

Routinizing social risk screening in subspecialty clinical settings

Social risk screening is the basis for subsequent interventions, whether assistance or adjustment. Ideally, social risk data should be shared across clinical settings; data obtained in primary care clinics should be shared with the subspecialty clinical team, and vice versa. However, subspecialists may see CMC more frequently than primary care pediatricians or may not have screening data from the primary care pediatrician readily available. In a multicenter study across emergency departments and primary care practices, 70% of survey respondents reported not being screened for social risks in the preceding year, underscoring the opportunity to strengthen social risk screening across healthcare settings.¹¹ Thus, subspecialty care teams should introduce systematic, standardized screening for social risks using models adopted in many other health settings. For example, the Centers for Medicare and Medicaid Services (CMS) Innovation Center’s Accountable Health Communities (AHC) tool¹² includes ten questions related to food, housing, transportation, utilities security, and intimate partner violence and takes less than three minutes to complete; the tool is currently being used in over 29 model demonstration sites across the US.

Many subspecialty practices already utilize team-based care approaches (e.g., advanced practice providers, social workers, dieticians), which can facilitate social risk screening. For example, nurse coordinators can conduct screening and inform other care team members (e.g., social workers and dieticians) if a patient reports specific relevant social risks. As subspecialty screening activities increase, improving information exchange between subspecialists and primary care clinicians will further help to ensure that families connect with relevant resources. Partnership between primary care and subspecialty pediatricians can provide consistent and seamless support for any social risks that are uncovered among CMC. Even in the absence of systematic assistance interventions to decrease social risk themselves, screening enables providers to adjust care logistics that may improve outcomes. Examples include reducing transportation barriers by coordinating multi-specialty visits on the same day or increasing the use of telehealth.

Within the Starzl Network for Excellence in Pediatric Liver Transplantation (SNEPT) Learning Health System, centers are implementing social risk screening annually after liver transplantation using the AHC tool and NASEM financial strain questions. The social risk data are included in the network’s data registry and are used to study the impact of social risks on post-transplant quality of life, immunosuppression adherence, and successful transition of care to adult transplant providers. Similarly, within the Children’s Oncology Group, a growing body of evidence that links social risks with both cancer relapse and overall survival has led to increased uptake of social risk data collection in pediatric cancer clinical trials. Until we begin consistently screening, we will not be able to identify needs and invest in relevant interventions.

Developing and delivering assistance and adjustment interventions in subspecialty clinics

The systematic collection of social risk data and its relationship to outcomes will form the foundation for developing disease-specific social interventions. Subspecialists are likely adept at adjusting care informally for their patients (e.g., ordering blood tests at a community laboratory even if certain specialized tests cannot be performed). Further, subspecialists have likely developed ad hoc approaches to assist CMC with social risks through their experience caring for these children. Such assistance activities might include support for medically tailored meals or writing letters for energy assistance for durable medical equipment. Thus, subspecialists have a unique vantage point from which to provide adjustment and assistance activities; developing systematic and evidence-based interventions will ensure that these activities are delivered to every CMC who could benefit from them.

As subspecialists embark on this research, patient and family voices should be intentionally incorporated to inform meaningful patient-centered interventions. Qualitative and community-based participatory research methods can uncover the unique challenges that patients and families encounter in their day-to-day lives and shed light on the mechanisms that underlie relationships between social risks and adverse outcomes in disease-relevant care management and treatment. For example, in one qualitative study, caregivers identified major obstacles in obtaining liquid formulations of immunosuppression agents.¹³ Caregivers described difficulty finding niche pharmacies and reported frequent medication filling errors by standard community pharmacies. In our work with families impacted by pediatric cancer, we found that middle-income families are particularly vulnerable to increasing social risks during treatment relative to both high- and low-income families.¹⁴ By engaging stakeholders, disease-specific contributors to observed disparities can be used to inform the design of social needs-informed interventions.

Overcoming implementation barriers to social care integration in subspecialty settings

Successfully integrating social care into subspecialty pediatric practices will require overcoming myriad barriers. These barriers may differ based on the setting and will require tailored strategies. Social worker staffing models and institutional resources vary widely across children’s subspecialty clinics and tertiary hospitals. There are several ways to encourage subspecialists to integrate social care into their practices.

At the local level, quality improvement tools (e.g., time-series analyses) could be used to implement reliable social risk screening programs. Key metrics to follow for these quality improvement initiatives include proportions of patients screened, patients with an identified need, patients who receive social care (e.g., referral to community-based resource), and patients whose identified need resolves. Implementation science frameworks (e.g., Capability, Opportunity, Motivation – Behavior)¹⁵ may offer a lens through which to identify implementation barriers and develop strategies to overcome them.

At the national level, subspecialists could develop multicenter interventions in cross-institutional collaborations. For example, established robust multicenter collaborative networks (e.g., Society for Pediatric Liver Transplantation, the Children’s Oncology Group, Childhood Arthritis and Rheumatology Research Alliance) that generate evidence for these relatively rare diseases can be used to evaluate efficacy of social care interventions for CMC.

Increased screening will identify more families with unmet needs, which may result in moral distress among providers if left unaddressed and increased workloads for managing the social care of these families. Thus, screening and interventions will require adequate staff and designated workflows. These changes will have important cost implications for busy subspecialty practices. Incorporating alternative staffing models (e.g., patient navigators) for this added workload may offer a cost-effective approach. Thus, policy approaches that incentivize delivering social care in subspecialty practices may be a key component for encouraging adoption. There are varying finance strategies, including social risk-adjusted capitated payments and fee-for-(social care)-service payment models.¹⁶ Capitated payment models may enable subspecialty practices to build capacity for delivering social care, while fee-for-service models may ensure that these financial incentives are being spent directly on social care activities (e.g., adjustment and assistance). Ultimately, sustained implementation of social care in subspecialty pediatrics will require payors to adequately compensate healthcare systems for this increased work.

Supporting high quality research on both effectiveness and implementation on social care in subspecialty pediatrics

As social interventions are designed, tested, and adopted, research must explore the impacts of these practices on CMC outcomes as well as the comparative effectiveness of social care in both primary care and subspecialty settings. As promising programs are developed, implementation research will be needed on how to ensure effective practices are implemented, sustained, and disseminated in a wide range of subspecialty contexts. While randomization can be difficult in the setting of social risk, subspeciality networks present a national venue for hybrid implementation-effectiveness trials. These networks could leverage clustered randomized trial design or pragmatic trial designs (e.g., stepped wedge trials) to test interventions across healthcare settings. For example, investigators are proposing an embedded randomized trial to testing the efficacy of a social risk-related intervention in which patients receive direct support for transportation and groceries¹⁷ on reducing parental distress in an upcoming Phase 3 therapeutic neuroblastoma trial (funded by R01CA267107). In addition, existing collaborative networks should commit to learning from each collaborating centers’ experience to identify efficacious social interventions and implementation strategies. For example, disease-specific ‘equity dashboards’ (real-time, continually updated snapshots of outcomes by race and socioeconomic status) may enable learning health systems to more easily identify and learn from centers that effectively narrow outcome gaps by race, ethnicity, and language differences.¹⁸ Leveraging subspecialty networks to evaluate and iterate on social interventions will ensure that such interventions are high quality and generalizable, while also adapted to the context of specific diseases.

CONCLUSION

It is now well-established that social risk escalates medical complexity and vice versa.¹⁹ Integrating social care into subspecialty pediatrics will require increased awareness of patients’ social context and challenges, designing interventions for distinct CMC populations, coordination with primary care clinicians and medical homes, and rigorously testing developed interventions. High quality evidence for social care interventions and policies that incentivize social care activities in subspecialty pediatrics could then enable broad implementation.

WHAT’S NEW.

Social care delivery in pediatric primary care has rapidly increased. Children living with medical complexity often have close relationships with their subspecialty medical teams. Integrating social care into subspecialty pediatrics may strengthen social care delivery in healthcare settings.