Cancer survivors are a growing population in the United States, estimated at 18 million in 2022, with 90% surviving five or more years.¹ In the general population medical care is estimated to account for 10%–20% of health outcomes, while other factors, including social determinants of health (SDOH), are responsible for as much as 80%–90%.^2–4 In addition to having ongoing medical needs, cancer survivors are likely to face unmet social needs, such as emotional and mental health concerns, difficulty with medical transportation, financial challenges, and food insecurity, among others.^5–10 Cancer survivors also face physical, mental, and social challenges including long-term effects from their therapies (e.g. fatigue, sexual dysfunction, depression, pain, etc.), financial toxicity related to medical bills, inability to work and/or job loss, and psychosocial challenges in adapting to life after being diagnosed with cancer.^11–16

Intersectionality theory posits that individuals have multiple identities (i.e. race, ethnicity, sex, sexuality, education, etc.) that intersect and reinforce one another in a way that shapes social experiences.¹⁷ Intersectionality provides a unique way of understanding health inequities, especially in cancer care. Historically marginalized populations, including racial and ethnic minorities, experience worse cancer outcomes regardless of socio-economic status,¹⁸ and also experience a higher prevalence of social risk factors due to structural inequities resulting from discrimination (e.g. redlining affecting geographic residence). People with cancer who also endure additional and interrelated disadvantages, such as lower income, racial stigma, and challenges with insurance, ultimately face greater stress and worse health outcomes.¹⁹

In a Detroit-based study of nearly 2,000 African American breast, colorectal, lung, and prostate cancer survivors, 36% reported unmet social needs including food insecurity, transportation challenges, housing instability, and utility shutoffs.¹⁰ Hispanic cancer survivors have also reported greater levels of unmet needs than non-Hispanic White patients, and Hispanic breast cancer survivors have reported greater unmet needs than Hispanic prostate cancer survivors.²⁰ Even when patients are referred to social resources, some of the most common barriers to accessing these resources include lack of sufficient information to access the resource, competing priorities, distrust or prior negative experiences with resources, immigration concerns, and language barriers.²¹ Thus, strategies are needed to better identify and address patients’ social needs and referral practices accounting for the needs of people from various racial, ethnic, and linguistic backgrounds and lived experiences.

While the impact of unmet social needs on cancer health outcomes is clear, few studies report on patient preferences for social care.^22–24 Furthermore, screening for and addressing social needs is at the discretion of the individual healthcare system or clinic as it is not a required standard of cancer care. The distress thermometer asks about some social needs, but its administration is highly variable across clinical settings and social needs are not asked if no distress is identified.²⁵ Furthermore, previous studies on social risk factor screening preferences among adults have largely focused on White individuals and English speakers.²⁶ Those that have included Spanish speakers in other populations (e.g. pediatrics) have observed some distinct preferences related to both culture and language.²⁷ As part of a larger study to address racism and bias in cancer care, we conducted these interviews to inform the delivery of social risk factor screening and community health worker support. For the parent study, we focused on breast and prostate cancer as they are the most common cancers with entrenched racial disparities in health outcomes.^28,29 We thus conducted this qualitative study oversampling racial and ethnic minority breast and prostate cancer patients to inform an intervention aimed to assess and address social risk factors among racially, ethnically, and linguistically diverse cancer survivors.

The study protocol was approved by the Institutional Review Board from the Georgetown-Howard University Center for Clinical and Translational Science (IRB #4397). Verbal consent was obtained from all participants prior to starting interviews to limit recording unnecessary identifiable patient information. The parent study was pre-registered at clinicaltrials.gov NCT05301114.

We interviewed 22 individuals with an average age of 64.5 years. Approximately 64% (n = 14, 63.6%) identified as female breast cancer survivors and 36.4% (n = 8) identified as male prostate cancer survivors (Table 2). While all participants were identified from the medical record by clinical staff as stage I–III at diagnosis, n = 8 (36.4%) did not know their stage at diagnosis. Eight participants (36.4%) self-reported their racial group as Black, one (4.5%) as Asian, two (9.1%) as “Two or more races,” five (22.7%) as White, and six (27.3%) as “Other.” Eight (36.4%) participants identified as Hispanic/Latinx ethnicity. For interview language, n = 14 (63.6%) preferred English, n = 7 (31.8%) Spanish, and n = 1 (4.5%) Amharic. English-speaking participants were diagnosed between March 2020 and July 2021, while Spanish speaking participants were largely diagnosed between January 2021 and April 2023. One Spanish speaking participant was first diagnosed in 2016 but had prostate cancer surgery in 2023 and the Amharic speaking participant was diagnosed in 2019.

We found that health-related social needs, preferences for screening discussions, and barriers/facilitators to social risk factor screening and cancer care differed by language among English speaking and non-English speaking breast and prostate cancer patients in our sample; we did not observe notable differences in responses by race. Actionable take-aways include suggestions to 1) accommodate patient preferences to speak to a member of the oncology team or be offered an option to respond to a trusted team member by phone; 2) provide examples of types of resources available to patients prior to or in tandem with social risk screening; and 3) inform patients who would be notified and who would address identified social needs. There was some consensus around a screening time point at initiation of treatment but differences in opinion on how often to reassess risk factors, suggesting that patients may prefer a choice to opt out of continued screening.

The literature surrounding social risk screening in patients is variable: Some work has previously suggested that patients may be averse to reporting social needs, citing concerns about data privacy.^22,23 This is contrary to other published findings, including our own work, in which both English speaking and non-English speaking patients were open to sharing social needs with clinical teams.^36,37 There was also no consensus on the ideal frequency of social risk screening among our sample, and we found that patient preferences on the frequency for screening varied significantly, suggesting that patients may prefer an option to opt out of repeat social risk screening. Challenges with identifying an “ideal” frequency of screening have been discussed in other work, suggesting a need for cancer care teams to balance changes in needs and survey fatigue among patients.³⁸

The English-speaking participants in our sample indicated a preference for having face-to-face conversations with care teams about social risk. This is consistent with other studies, and it is possible that holding these conversations face-to-face could serve to strengthen the relationship and trust between patient and provider.^23,39 Conversely, the non-English speaking participants in our work expressed an interest in survey or phone-delivered social risk screening in their native language so that conversations could remain private. However, if conducted by phone, participants indicated the caller should identify themselves as part of the healthcare team. To our knowledge, this has not previously been reported in relation to social risk factor screening. However, previous work has found associations between individuals who have experienced bias and discrimination and a desire for confidential social risk screening,⁴⁰ suggesting that patients’ preferences may therefore relate to their identities and lived experiences with discrimination and bias in the healthcare setting. Previous work on patient centered care and communication examining characteristics such as age, sex, race/ethnicity, and diagnosis suggests that there are racial and ethnic differences in how communication is perceived;⁴¹ however, racial differences did not come through explicitly in our work. Some previous work on patient portal-based screening suggests that portal use and perception may vary based on demographics, health literacy, and usability; this option was not preferred by participants in this study, though portal delivered screening has been successfully implemented in other settings.^42,43

Non-English speaking participants also expressed a preference for screening in their native language, and discussed challenges with interpreter services. This has been previously documented, with improved patient experiences and care when patients have language concordant healthcare workers.^44–47 Similarly, existing literature suggests that patients may be more willing to engage with healthcare practices and providers who are culturally concordant, who actively listen, and who can anticipate cultural needs and priorities in screening (e.g. familismo).²⁷ Our contradictory finding of family providing support but also being a source of stigma that could impede asking for help with social needs among Hispanic/Latinx patients has also been previously reported.^48–50 Together, these findings suggest the importance of linguistically concordant and culturally appropriate social risk screening practices, while recognizing that there may not be a one-size-fits-all approach. It is important to note that the survey and phone preference in our non-English speaking sample noted above could also be due to lack of language concordance with their oncology team members.

Our findings also support the importance of universal social risk screening to better capture and address the burden of social risk factors.^51–54 In our study, several English-speaking participants received referrals or resource information from their care teams only after they asked for help. Some non-English speaking participants also described feeling more comfortable disclosing needs if they knew their care team could provide relevant resources. Previous qualitative work among Latinx patients described how patients feel frustrated when they disclose social needs information without follow-up or complete a social needs screening without discussing results with their care team.²⁷ This sentiment was echoed in participants in this study. Furthermore, most participants interviewed in the present study experienced social needs at some point in their cancer experience, many of which were not discussed with care teams. The high prevalence of unmet social needs among cancer survivors is not unique to our study,^55–58 nor is social risk screening for social needs a standard part of cancer care for all cancer care settings despite a recognition of its importance.⁵⁹ The finding that most participants experienced a need during the cancer experience provides evidence to suggest that health-related social risk factor screening should be completed through a standardized, scheduled format⁶⁰ rather than waiting to see if social needs emerge through patient-provider conversations.

It is also important to note that many participants attempted to seek out support for their social needs but faced challenges in finding appropriate resources and/or did not receive helpful responses. Research exploring care delivery models for addressing unmet social needs suggested improved outcomes through direct, as opposed to indirect, referrals.⁶¹ At least some of the participants in the present study relied on indirect referrals, which may explain the challenges they faced in addressing needs. This further suggests that healthcare systems should consider referral pathways carefully when implementing social needs screening.

Finally, in this study we asked participants to define what “health” means to them with the intention of understanding participant values pertaining to their health and to inform culturally appropriate interventions. Previous research has theorized that motivations for enhancing and sustaining healthy behaviors can be fostered through trusted connections with health professionals, suggesting a role for non-medical healthcare workers (e.g. CHWs) in helping cancer survivors reach health goals.^62–64 The range in responses among cancer survivors in our study, from actionable behaviors (e.g. nutrition) to social relationships (e.g. family), is consistent with other work regarding health-related goals in cancer survivorship.⁶⁵

Our study has limitations. First, participants were recruited primarily from two cancer sites, and fewer prostate cancer survivors agreed to participate than breast cancer survivors. Those participants who were recruited via referral may have had unique experiences, either good or bad, that motivated participation. Second, this work was conducted primarily with English and Spanish-speaking individuals. The first round of interviews in 2022 was with English speakers, the second round in 2023 was with Spanish and Amharic speakers. There may have been secular changes over that time. Still, the strengths of our study include the racial, ethnic, and language diversity of the sample and the attention to understanding patient perspectives as part of formative work for an intervention. Next steps include delivering social risk factor screening and referrals for survivors of cancer and conducting subsequent rounds of interviews to understand patient experiences with social risk factor screening and referrals, and its impact on quality of life.

Findings suggest the breast and prostate cancer survivors in this study were open to social risk factor screening during treatment, and that language preference emerged as the primary distinguishing factor in screening experiences and preferences for screening delivery. This work highlights a need for culturally and linguistically appropriate tailoring for interventions, particularly for Hispanic/Latinx patients who prefer Spanish to identify and address patients’ social risk. Future research may focus on additional culturally diverse populations, exploring social needs screening implementation, and its impact on health outcomes.