APOS PSYCHOSOCIAL
POCKET GUIDE

Assessment and Equity Variables Related to Screening in Unique, High-Risk Populations

Introduction

Medically underserved populations (e.g., racial/ethnic minorities) experience a disproportionate burden of cancer¹⁷ and often report poorer health-related quality of life, worse symptom burden, and greater cancer-related distress. Numerous complex, interrelated factors contribute to cancer health disparities including behavioral and cultural (e.g., cultural health beliefs), biological and genetic (e.g., ancestry-related differences), clinical (e.g., limited health insurance), environmental (e.g., living in disadvantaged neighborhoods), psychological (e.g., emotional distress), and social (e.g., low SES) factors.¹⁷ Distress screening and management are key components of delivering whole-patient-centered comprehensive care and optimizing cancer outcomes. Critical gaps in distress screening research are the inadequate 1) diversity in study samples and consequently, the lack of culturally and linguistically tailored assessments for diverse oncology populations, and 2) consideration and inclusion of social determinants of health (SDOH] that contribute to distress.

 Major Principles and Concepts:

1. Vulnerable Populations

Despite documented disparities, racial/ethnic minority and underserved groups are significantly underrepresented in cancer research, and effective assessment and management of their psychosocial distress remain understudied. Deshields and colleagues⁷ identified several populations who face unique sociocultural barriers to engaging in psychosocial services and who need more targeted distress screening and equitable access to distress management interventions. For example, patients who have physical or cognitive limitations, are socioeconomically disadvantaged, have language barriers or limited health literacy, have preexisting mental health or substance use disorders, are of sexual and gender minorities, are older adults, or are pediatric, adolescent, or young adult patients. Specific barriers to the implementation of distress management and recommendations for evidence-based strategies and interventions for each group are detailed in Deshields’ and colleagues’ paper⁷.

2. Social Determinants of Health (SDOH)

SDOH are among the most important factors contributing to disparities and inequalities in cancer care and outcomes. SDOH refers to the conditions in the environments where people are born, live, work, play, and age that affect a wide range of health and quality of life risks and outcomes. Structural and systemic racism directly influence adverse differences in SDOH.¹⁷

Examples of SDOH that affect cancer outcomes:¹⁸

• Education
• Employment/Income/SES status
• Housing and neighborhood
• Food and nutrition
• Social connectedness
• Access and utilization of communication technology e.g., internet, smartphone
• Family stability and unity
• Safety
• Discrimination, racism, minoritization
• Health access, affordability and quality

a. Resource Guide and Sources of Data for SDOH

https://www.ncqa.org/wp-content/uploads/2020/10/20201009_SDOH-Resource_Guide.pdf

https://www.cdc.gov/socialdeterminants/data/index.htm

https://www.ahrq.gov/sdoh/data-analytics/sdoh-data.html

American Community Survey https://www.census.gov/programs-surveys/acs

Area Deprivation Index https://www.neighborhoodatlas.medicine.wisc.edu/

b. SDOH Assessments

Given the impact of SDOH, standard assessments should be utilized in conjunction with general distress screening tools, which often do not include or address patients’ social risks.

There are several validated individual-level measures of SDOH including:

Protocol for Responding to & Assessing Patients’ Assets, Risks & Experiences

The PRAPARE is a 17-item nationally standardized, stakeholder-driven, and evidence-based patient risk assessment tool for evaluating and addressing individuals’ SDOH, and is available in over 25 languages (https://prapare.org/the-prapare-screening-tool/). It is comprised of four core domains: personal characteristics, family and home, money and resources, and social and emotional health. See Table 4.

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Table 4. PRAPARE Questions for Assessing SDOH

PRAPARE Electronic Health Record (EHR) templates are freely available for Cerner, eClinicalWorks, Epic, GE Centricity, Greenway Intergy, and NextGen. Users must first sign an “End User License Agreement,” which can be completed online at https://prapare.org/license-agreements/eula/. An Excel file template is also available for standardized PRAPARE data collection without EHR integration (http://www.nachc.org/wp-content/uploads/2019/01/Excel-version-of-PRAPARE_Tool_Mass-League.xlsm).

Click here to view table as PDF

Accountable Health Communities (ACH) Health-Related Social Needs (HRSN)

The ACH HRSN Screening Tool was developed by the Centers for Medicare & Medicaid Services (CMS) Center for Medicare and Medicaid Innovation (CMMI). HSRNs refer to individual-level, social conditions (e.g., food insecurity, housing instability) that have adverse effects on an individual’s health or health care. The tool includes 10 core questions and five core domains: living situation, food, transportation, utilities, and safety. There are also eight supplemental domains (additional 16 questions) addressing financial strain, employment, family and community support, education, physical activity, substance use, mental health, and disabilities. A guide to using the ACH HRSN Screening Tool is available online at https://innovation.cms.gov/files/worksheets/ahcm-screeningtool.pdf, and includes the standard, proxy, and multiuse versions of the tool (see Appendix A.1-A.3 in the Guide Book).

3. Culture

Culture refers to a shared set of beliefs, values, and practices that are passed down from one generation to the next and influences its members’ worldviews as well as the meanings assigned to cancer and their response to disease and health care system.^18,19  The impact of culture on cancer outcomes is cumulative and affects all stages of the cancer continuum from prevention to treatment, survivorship, and end-of-life care. To maximize cancer outcomes for patients with diverse cultural backgrounds, it is essential to enhance workforce diversity and to implement cultural competency training for oncology providers. Providers must be aware of, and sensitive to, cultural diversity including various life situations and factors that shape a patient’s identity (e.g., cultural and linguistic background, refugee status, homelessness) to provide individualized and quality care to all patients. Cross-cultural communication skills are key to establishing rapport and trust with patients and implementing culturally integrated psycho-oncology care.

To begin a clinical encounter, we recommend asking the following items (Table 5) in order to gain a better appreciation of patients’ understanding of their health conditions, including how patients perceive their conditions will progress and what their goals for treatment are.¹⁹

^{Table 5. Questions to Ask Patients About Their Understanding of Their Health Condition:}   

^ adapted from Kleinman’s 8 questions to elicit patient’s understanding of their health condition ¹⁹

^{Click here to view table as PDF}

To foster culturally competent communication, Kagawa-Singer and colleagues¹⁸ specified five recommendations for providers to use in practice to address cultural variations (see Table 6).

Table 6. Specific Recommendations for Integrating Culture into Clinical Practice

^ adapted from Kagawa‐Singer et al, 2010, Cancer, culture, and health disparities: Time to chart a new course?¹⁸

^{Click here to view table as PDF}

For a list of ethnic-specific cancer support resources, such as Redes en Acción of the National Latino Cancer Research Network or the National Asian American and Pacific Islander Cancer Survivors Network, please review Table 4 in Kagawa‐Singer and colleagues’ (2010) article.

 4. Staff Training and Readiness – Cultural Competency

To enhance communication and quality care in oncology, Ashing and colleagues²⁰ developed a Health Equity Care approach that encompasses three pillars:

1. Cultural competency: cultural knowledge, behaviors, attitudes, values, and skills necessary to provide effective clinical care for diverse populations.
2. Cultural humility: lifelong self-evaluation and self-critique, acknowledging one’s own biases, and embracing and practicing dignity, justice, and respect for the patient.
3. Cultural empathy: deep admiration, appreciation, and understanding of the diverse self-experiences of patients from other cultures.

c. Future Directions:

• Electronic methods of screening (e.g., tablet-based screening) can be helpful in providing rapid triage to other professionals, community resources, and tailored educational content based on patient-reported needs.⁷
• SDOH integrated into distress screening and SDOH-informed care should be components of whole-person, patient-centered care and research such that SDOH is assessed and analyzed in both therapeutic and non-therapeutic studies.
  • Integrate SDOH assessments into patient portals— PRAPARE EHR templates are freely available (must sign end user licensing agreement) for the following EHRs: Athena, eClinicalWorks, Epic, GE Centricity, Greenway Intergy, and NextGen.

d. Bottom Line / Conclusion:

We recommend these strategies to improve screening:

• Assess Individual- and population- (e.g., American Community Survey, Area Deprivation Index) based SDOH;
• Assess comorbidities;
• Assess daily life stressors – lived contexts and premorbid distress;
• Consider language relevance, and reliability and validity of assessment tools; and
• Train staff – in cultural competency and humility, Unconscious Bias.

We recommend these strategies to improve distress management and outcomes for all patients and, in particular, minoritized and medically vulnerable persons:

• Provide culturally appropriate resources that attend to SDOH (i.e., https://uniteus.com/, Aunt Bertha, findhelp.org).
• Attend to co-occurring chronic illness(es) within cancer care to offer whole person care.