Social Care Recommendations in National Diabetes Treatment Guidelines

Type II diabetes mellitus (T2D) affects one in every 10 people in the USA and is associated with a wide range of complications, including neuropathy, kidney disease, and cardiovascular disease [1, 2]. The disease and its comorbidities contribute to annual costs exceeding $300 billion, with over $200 billion in direct health care expenditures [3]. Despite substantial national investments in T2D prevention and treatment, the T2D age-adjusted death rate has increased nearly every year in the past decade [4, 5]. These rates have increased more rapidly in low-income and racialized populations—demonstrating pervasive health inequities [6•, 7]. The observed racial and ethnic disparities stem in part from the intertwining of race and poverty in the USA: financial insecurity, lack of transportation access, and low levels of literacy disproportionately affect US people of color [6•, 7], and these factors influence patients’ level of engagement in care [8, 9]. A new wave of innovations is needed to confront the US T2D epidemic and the deeply entrenched social and economic inequities that have exacerbated it.

To advance work on health inequity, numerous US health professional organizations have called for systematically integrating social care into health care delivery [10]. These calls have focused on both expanding social risk screening and increasing navigation supports to help patients obtain relevant social services [10]. Reflecting this growing interest in social care, agencies such as the Centers for Medicare and Medicaid Services (CMS) and the National Commission on Quality Assurance are currently considering performance measures related to social care screening and interventions under select programs. In parallel, numerous states are incorporating strategies to incentivize social care initiatives. The evidence base on both social risk screening and related interventions is also rapidly expanding [11].

In this paper, we examine how and to what extent national T2D treatment and management guidelines, specifically, have incorporated social care recommendations. Disease treatment and management guidelines are an important national resource for T2D care standardization; they provide clinicians, patients, payers, and other health care stakeholders specific evidence-based recommendations. To assess how T2D guidelines address social care, the research team relied on a framework described in a 2019 National Academies of Science, Engineering, and Medicine (NASEM) report that was the first national effort to articulate different types of medical and social care integration strategies [12]. The report delineates for five categories for social care activities at both the patient-, healthcare-, and community-levels: Awareness, Adjustment, Assistance, Alignment, and Advocacy (see Table 1). Though not specific to T2D, the report’s social care framework provides a scaffold for designing, identifying, and strengthening health care engagement in this rapidly expanding area of health care services.

Using the NASEM framework, the analyses presented here examined if, how, and in what circumstances current T2D care guidelines incorporate social care activities (i.e., screening, intervention, and advocacy). This has important implications for social and T2D care integration: if the guidelines already include social care recommendations, the next step would be to assess the prevalence, facilitators, and barriers to providing such care; if they do not, future efforts should focus on strengthening health care services research on social care integration to ensure they are translatable to clinical treatment and management recommendations.

Following the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRIMSA) recommendations, a systematic scoping review was conducted on T2D treatment and management guidelines [13]. Per methods applied in previous reviews, treatment and management guidelines were defined as published recommendations on T2D management sanctioned by a national health or health care professional organization [14, 15].

One hundred and fifty-eight national T2D treatment and care guidelines met study inclusion criteria; 154 came from the initial PubMed search, and 4 were added from the subsequent search of professional T2D and endocrine association websites (see Fig. 1). The majority (122; 77%) of these guidelines did not include recommendations related to any of the five NASEM social care activities; the remaining 36 (23%) referred to one or more social care activities. Among the 36 guidelines that did refer to social care activities, the frequency of recommendations varied by social care category. While less than half of the guidelines (15/36; 42%) recommended Awareness activities and almost all recommended Adjustment activities (34/36; 94%), only eight (8/36; 22%) included recommendations related to Assistance activities; four guidelines (4/36; 11%) recommended Alignment activities, and five (5/36; 14%) recommended Advocacy activities. As shown in Table 2, more recently published guidelines are more likely to describe social care activities: three guidelines published before 2000 included at least one type of social care recommendations, while in 2022 alone, all guidelines included multiple types of social care recommendation. Four additional guidelines acknowledged the influence of social conditions on T2D outcomes in the absence of specific social care activity recommendations [17‐20].

In the 15 guidelines that suggested clinical teams collect social risk/asset information from patients (Awareness activities), the predominant focus was on three social domains: food insecurity, financial insecurity, and language and literacy [21‐32, 33•, 34‐36]. Several guidelines also recommended collecting information on challenges to accessing health care and other sociodemographic factors that influence T2D treatment and management [21, 22, 24, 26, 28‐30, 32, 33•, 34‐36]. None of the 15 guidelines that mentioned awareness activities described specific tools or implementation strategies for social risk or asset screening. For instance, one guideline called on providers to assess patient barriers related to both income and literacy recommendations but did not include any recommendations regarding specific screening measures, workflows, screening frequency, or data documentation [33•].

Adjustment recommendations (changes to health care delivery based on patients’ social conditions) appeared in 34 guidelines. Recommendations again clustered around three social domains, in this case financial security, language and literacy, and other sociodemographic factors [21‐24, 26, 27, 29‐32, 33•, 34‐54]. Financial resource strain-related adjustments included reducing medication expenses by changing type and/or number of medications [44, 49, 50]; changing dietary recommendations to limit food costs [29]; and reducing health care referrals and in-person visits to reduce transportation needs or visit co-pays [30, 45]. Adjustments to reduce language and literacy barriers to care included efforts to match patients’ health care services with language preferences and literacy level [23, 33•, 51]. Adjustments related to patients’ cultural backgrounds and religious traditions included recommendations to change nutrition and medications to accommodate religious holidays or events, e.g., reducing insulin doses by 10% to 30% for patients fasting during Ramadan [32, 34, 47].

Assistance recommendations (defined by NASEM as suggestions for health care teams to intervene directly on social barriers that might impede T2D management) appeared in 8 guidelines. These recommendations included referring patients experiencing social barriers to health care, government, and/or community-based services intended to reduce those barriers, e.g., referrals for patients experiencing food insecurity to food assistance programs [29, 31, 32, 33•, 40, 45, 47]. Other recommendations included helping to reduce barriers to accessing health care services [29, 32, 33•, 52].

References to Alignment activities appeared in four guidelines, each example encouraging health care delivery organizations to align internal practices and external investments to complement community socioeconomic development [24, 29, 32, 33•]. These included recommendations to support the design of healthy food delivery systems [29] and encourage consumer advisory boards to ensure community needs are reflected in organizational decisions related to T2D prevention, management, and education [24].

Recommendations in five guidelines reflected the NASEM framework’s social care Advocacy category, which encourages health care organizations to promote policies and resources that increase the availability of social care resources at the community level [25, 29, 32, 50, 51]. These recommendations included organizational advocacy to improve insulin affordability [50] and the availability of diabetes management resources [25, 51]. Another recommendation encouraged policy-oriented advocacy around improving neighborhood-level social conditions to better support healthy lifestyles as a means of preventing and treating T2D.[32].

In this review of 158 T2D treatment and management guidelines, 122 guidelines (77%) did not refer to social determinants of T2D or recommend social care-related activities, e.g., screening for social risk or intervening to reduce or mitigate social risk. While the 2016 guideline dedicated specifically to psychosocial care for persons with T2D from the ADA acknowledges the role of social conditions in shaping T2D management and treatment, it does not describe any concrete social care recommendations [55]. Though references to social determinants increase in more recent publications, the finding that the majority of these documents do not refer to social determinants of T2D and that so few outline care recommendations are striking in light of consistent and compelling evidence on the impact of social adversity on T2D outcomes and comorbidities [6•, 7].

Among the guidelines that do include specific patient-level social care intervention strategies, few suggest systematically identifying social risks as part of T2D care. For instance, in the 34 guidelines that make recommendations to adjust treatment based on social risk information, under half (15) recommend routinely screening for any social risk factors to inform those types of adjustments. Of the 8 guidelines that recommend providing some form of assistance related to social needs, just seven suggest some form of social risk assessment. In the same ADA report described above that is specifically dedicated to psychosocial care [55], no socioeconomic risk screening measure is recommended, though 28 other measures are described that assess other psychosocial constructs in clinical settings. Yet, here are several screening tools that have been widely implemented in community health centers and other health systems to assess several social risks, including the Protocol for Responding to Assessing Patients’ Assets, Risks, and Experiences (PRAPARE) Screening Tool and Centers for Medicare and Medicaid Services-Accountable Health Communities Health-Related Social Needs Screening Tool [56, 57]. This disconnect between social risk assessment and related patient-level interventions points to gaps in the literature on social risk screening—including on its benefits, unintended consequences, and implementation—which might explain why screening is not consistently included in the guidelines alongside other specific person-reported measures (e.g., depression or diabetes distress screening). More worrisome, however, is that recommending interventions without some form of systematic strategy for identifying patients who might benefit from these interventions might contribute to inequitable intervention implementation and impact.

More generally, the relative sparsity of references to social determinants and recommendations about social care in T2D treatment and management guidelines may reflect gaps in high-quality evidence demonstrating that specific social care interventions are effective for improving T2D outcomes. Yet a growing crop of research studies suggests that select patient-directed social care interventions can affect health outcomes—including outcomes specific to T2D [58, 59]. These types of social care studies will need to be carefully monitored over time by guideline developers to assess whether sufficient evidence has accumulated to warrant updating future guideline iterations.

Finally, the fact that 12 clinical treatment and management guidelines do include alignment and/or advocacy recommendations highlights a growing recognition that effective prevention and treatment of chronic diseases like T2D will likely require community-level interventions. The small total number of recommendations made on this topic; however, indicates that the role of the health care delivery system in those activities has yet to be firmly established.