Coordinated and Comprehensive Survivorship Care for Latinos

by

Research
advancing the science of cancer in latinos proceedings doc patient 3
Share On Social!

This content is from the “Advancing the Science of Cancer in Latinos: 2024 Conference Proceedings.”

Latino Cancer Survivors’ Quality of Life and Survivorship Care

Dr. Kristi D. Graves is a tenured Professor of Oncology, Cancer Prevention and Control Program leader at the Lombardi Comprehensive Cancer Center, and Associate Dean for Faculty Development at Georgetown University Medical Center.

Latino cancer survivorship

Dr. Kristi D. Graves
Dr. Kristi D. Graves

Dr. Graves’s presentation began by discussing cancer survivorship across the cancer continuum. The National Cancer Institute’s (NCI) Office of Cancer Survivorship states that “an individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer. This term is meant to capture a population of those with a history of cancer rather than to provide a label that may or may not resonate with individuals.”

Latino and Black survivors experience a wide range of disparities, including increased use of financial coping behaviors (such as skipping medications) and worse health-related quality of life (HRQOL) outcomes compared to non-Hispanic White survivors. Potential solutions to these disparities include partnerships with community outreach and engagement programs, local community-based organizations, community health educators, promotoras, and patient navigators.

The American Association for Cancer Research describes three phases of cancer survivorship: acute survivorship, consisting of the time of cancer treatment; extended survivorship, describing the months immediately following cancer and treatment; and permanent survivorship, which encompasses the long-term effects of cancer and treatment. Dr. Graves and colleagues have initiated interventions at each of the three phases of cancer survivorship.

The ÁRBOLES Familiares Training Program

Dr. Graves’s work on acute survivorship focuses on identifying high risk Latina survivors. Through partnerships with community health educators, the ÁRBOLES Familiares Training Program, co-led by Dr. Susan Vadaparampil, was initiated to address disparities in awareness and uptake of genetic risk assessment among Latinos. The program’s goal was to improve trainees’ knowledge and confidence about cancer genetics and hereditary breast and ovarian cancer (HBOC) by providing skills for identification of individuals at high risk, referral and navigation of appropriate patients to genetic services, and communication about cancer risk.

Trainees included community health workers and educators, promotoras, lay health advisors, and patient navigators. All trainees were bilingual in English and Spanish, engaged with the Hispanic/Latino community, and interested in learning about increased cancer risk and HBOC. One of the training components was the development of an action project by each trainee. These action projects included educational flyers, presentations, resource lists, information guides, and more. These projects focused on the accurate distribution of information about HBOC, genetic counseling, genetic testing, and family history.

This project shows the utility of community health workers and promotoras in bridging the gap between Latinos at high risk for HBOC and genetic services. Future work in this area could explore the effect of the trainees’ action projects on community members’ uptake of these services.

MY-Health study

Dr. Graves’s work on the extended survivorship phase of cancer survivorship considered quality of life by country of origin. It is imperative that Latino cancer data become disaggregated to more accurately understand cancer survivorship in Latino subpopulations. To address this concern, a cohort of 5,366 cancer survivors were enrolled between 6 and 13 months after diagnosis in the MY-Health cohort (co-led by Dr. Arnold Potosky and Dr. Carol Moinpour). Quality of life was measured using the Patient Reported Outcomes Measurement Information System (PROMIS) short forms to discern if HRQOL differs by survivors’ country of origin after accounting for clinical, demographic, and structural determinants of health variables.

A disproportionately high percentage of Latinos from the Caribbean (Puerto Rico, Cuba, and Dominican Republic) fell into the very low HRQOL category, while a high percentage of Mexican and other Hispanic survivors fell into the low HRQOL category. This inequity shows the importance of early identification of cancer survivors most at risk for very low HRQOL in order to initiate interventions and symptom management. Future work to evaluate the use of HRQOL screeners to promote timely referral for linguistically and culturally-relevant survivorship care may be useful.

Self-acupressure

The work done by Dr. Graves on the permanent survivorship phase of cancer survivorship involves adapting evidence-based symptom management interventions for Latina survivors. In partnership with Dr. Judy Wang, a pilot study has been undertaken to assess the usefulness of self-acupressure, which has shown promising results in Chinese American breast cancer survivors. The stimulation of acupoints triggers the hypothalamic-pituitary-adrenocortical axis in order to influence sympathetic and peripheral nervous system function. It can also be performed at home for no monetary cost. A video was culturally and linguistically adapted for Black and Latina breast cancer survivors and the pilot study is currently underway, and results are pending completion.

Interventions at each stage of cancer survivorship are vital for addressing disparities among Latino survivors. Furthermore, the disaggregation of Latino cancer survivorship data is imperative to fully understand outcomes among different groups of Latino survivors. Evidence-based strategies must be adapted to reduce disparities in symptom burden among Latinos, and investment must be made in cancer survivorship research, community partnerships, training, and diversifying the cancer survivorship research and clinical workforce.

Impact of Patient-Centered Care and Care Experiences for Latino Cancer Survivors

Dr. Albert Farias is Assistant Professor of Population and Public Health Sciences at the Keck School of Medicine at the University of Southern California.

Latino experiences of cancer care

Using data from the California Cancer Registry, Dr. Farias and others have found that certain racial/ethnic groups, including Hispanics/Latino patients, have a lower probability of receiving timely surgical treatment when diagnosed with early-stage breast cancer. It is known that receiving timely evidence-based cancer treatment is vital to reducing disparities in cancer mortality. Why these disparities exist, especially in light of novel therapies being developed, is an important question to consider.

Dr. Albert Farias
Dr. Albert Farias

To answer this question, Dr. Farias and colleagues have taken a sequential mixed methods approach to understanding the voices of Latino cancer patients. By asking a racially diverse group of cancer patients about their experiences with cancer treatment, it was discovered that how doctors talk to patients matters. Furthermore, not only did interactions with providers affect the experience of cancer treatment, but also interactions with front office staff, being able to contact someone during off-peak hours, and the physical location and cleanliness of the treatment facilities.

The gold standard for quantitatively measuring these experiences with healthcare is the Consumer Assessment of Healthcare Providers and Systems (CAHPS). The CAHPS program was founded in 1995 and was constructed through a collaborative process which included literature reviews of patient experiences, focus groups with patients, and mining existing patient experience surveys. The result was a patient experience survey that had limited subjectivity, minimal measurement error, standardized measures, and actionable and time-specific data.

Three specific care experiences that have been identified as most important for Latino patients are physician communication, getting care quickly, and getting needed care. These composite measures are derived from a series of individual questions that ask the patients to respond with “never,” “sometimes,” “usually,” or “always.” For example, a patient might be asked, “In the last 6 months did the doctor show respect during your interaction?” Scores range from 0-100 for each care experience, with 90-100 indicating an excellent experience.

Although CAHPS measures are currently used in quality improvement, public reporting, certification and recognition, value-based purchasing, and health services research, they have not yet been used to measure healthcare delivery approaches for underserved populations. In fact, very few studies have been conducted identifying the relationship between patient experiences with care and care outcomes.

A systematic review and conceptual model

Dr. Farias and colleagues have developed a conceptual model based on a systematic review of the literature. This model reveals that how patients are treated may impact the care that is received by patients, or clinical health outcomes. In order to test the hypothesis that patient experiences with care across domains are associated with receipt of evidence-based care, the population based SEER-CAHPS dataset was used.

The first question posed was whether Latino disparities existed in patient experiences with care. Although disparities based on race/ethnicity in patient experiences with healthcare customer service prior to diagnosis were not observed, disparities between Latino patients and non-Hispanic White patients were significant in the experience of getting needed care prior to diagnosis. In fact, when measures were considered by cancer type, the mean difference in the ability to get needed care was significantly lower for Latino breast and colorectal cancer patients compared to non-Hispanic White patients prior to diagnosis. Disparities were also present after diagnosis, with significant differences observed in the ability to get needed care between Latino and non-Hispanic White patients.

When assessing whether these disparities in patient experiences with care would affect receipt of guideline-concordant cancer treatment, it was found that colorectal cancer patients who had excellent experiences (scored 90 or above) in the measures of getting care quickly, getting needed care, and physician communication had a higher likelihood of receiving guideline-concordant care. In fact, patients with excellent experiences in getting care quickly had 25% greater odds of receiving stage-specific guideline-concordant cancer treatment, with similar associations observed with the other CAHPS measures.

Interestingly, if Latino and non-Hispanic White patients with excellent reports of getting care quickly and getting needed care were considered separately, Latino patients were actually more likely to receive stage-specific guideline-concordant colorectal cancer treatment. This highlights the exciting possibility that ensuring excellent experiences with care for Latino cancer patients could minimize treatment disparities. Therefore, directing resources towards improving Latino patient experiences with care is a step towards achieving cancer healthcare equity.

Patient Activation and Palliative Care among Hispanics/Latinos with Metastatic Cancer

Dr. Patricia I. Moreno is Assistant Professor in the Public Health Science Department at the Miller School of Medicine at the University of Miami.

Latino patients and metastatic cancer

Dr. Patricia I. Moreno
Dr. Patricia I. Moreno

Dr. Moreno’s presentation began with an overview of the Latino community in the US. Latino individuals comprise 19% of the population in the US, making Latinos one of the largest and most rapidly growing racial/ethnic minority groups. In fact, the Latino population is projected to account for more than half of the overall growth in the US through 2060. Compared to non-Hispanic White individuals, Latinos are more likely to have lower educational attainment, have lower health literacy, live below the federal poverty level, and lack health insurance or be underinsured.

Across the cancer continuum, Latino patients demonstrate a lower likelihood of having a primary care provider, lower rates of cancer screening, and a greater likelihood of being diagnosed with advanced cancer. Although cancer is one of the leading causes of death among Latino individuals in the US, accounting for one-fifth of deaths, Latino patients remain largely underrepresented in cancer research and cancer clinical trials.

Taking a look now at the unmet needs of patients with metastatic cancer, a 2022 US study found that there were 623,405 patients living with the 6 most common metastatic cancers and projected that number to increase to 693,425 by 2025. These patients are highly underrepresented in clinical trials and have distinct survivorship needs, including the following: cumulative burnout and toxicities related to continuously undergoing cancer treatment, uncertainty and anxiety scan-to-scan regarding response to cancer treatments, coping with loss and end-of-life concerns, diagnosis-related stigma and social isolation, misconceptions regarding metastatic cancer, and the need for community.

Palliative care

Specialty palliative care teams are led by board-certified palliative medicine physicians who care for patients with serious illness and aim to manage symptoms, manage functional limitations, improve quality of life, clarify treatment goals, and facilitate decision-making and transition care. Although outdated models of care only incorporated palliative care at end of life, after disease-modifying treatment is no longer available, newer evidence-based models emphasize its integration earlier in the disease course in the ambulatory setting in order to proactively prevent unnecessary suffering.

Early integration of palliative care in patients with metastatic cancer improves outcomes throughout the disease course by increasing quality of life and satisfaction with care, while decreasing symptom burden, hospital admissions, emergency visits, and healthcare costs. According to the World Health Organization (WHO), assessment of physical symptoms and psychosocial concerns is a defining component of palliative care. However, best practices to screen and identify cancer patients with complex needs who would benefit from palliative care have not been established.

Relative to non-Hispanic White patients, Latino cancer patients with metastatic cancer experience worse quality of life and symptom burden following diagnosis and treatment of cancer. They are also less likely to receive palliative care, yet very little is known about facilitators and barriers to palliative care among Latino patients or how to empower Latinos in conversations about palliative care.

Latinos experience particular palliative care needs: frustration and ambivalence regarding who should address new or worsening symptoms and side effects of a cancer therapy, the need for prognostic information and communication with the care team regarding prognosis, feeling overwhelmed by treatment decision-making and weighing available options, and fear of loss of control and end-of-life concerns. Certain beliefs about palliative care may act as barriers to care: it is the care that immediately precedes hospice, it is the same as hospice, it is only for pain management, it is for quality of life at end of life, it is only if there are no other options left. Furthermore, many Latino patients have never heard of palliative care.

The preferred approach to palliative care is patient-centered with a needs-based approach, systematically identifying patients who are likely to benefit from palliative care through screening, deploying care in response to their symptoms and supportive care needs, and proactively avoiding symptom crises and improving quality of life. Implementing routine patient reported outcomes (PROs) in ambulatory oncology may represent a critical opportunity to carry out this type of screen, and it may provide a way to take into account certain structural limitations such as the capacity of the specialty palliative care workforce.

In order to achieve greater patient activation toward palliative care, misconceptions must be addressed. Effective patient-provider communication is also central to timely, targeted integration of palliative care, and patients must be empowered participants in this communication. Finally, assessments associated with ambulatory oncology may be beneficial for guiding patients to palliative care.

Explore More:

Cancer, Clinical Trials

By The Numbers By The Numbers

142

Percent

Expected rise in Latino cancer cases in coming years

Share your thoughts