By Nancy Cruz Sitner, DNP, ANP-BC, BMTCN®
The journey from cancer diagnosis to treatment with hematopoietic stem cell transplantation (HSCT) is a complex, costly, and multifaceted process influenced by various factors that shape the course of patient care. HSCT is particularly susceptible to racial, socioeconomic, and geographic disparities in access and outcomes, given its specialized nature and limited availability in just about 200 U.S. cancer centers.
A patient's socioeconomic status (SES) is a critical social determinant of health that significantly shapes their cancer diagnosis and referral pathway. On its surface, SES calculations are based on education, social support, and income. However, it is a surrogate marker reflecting deeper differences in factors like ethnicity or race, availability of new treatment options, access to health system facilities, disparities in insurance status, and location (rural or urban versus metropolitan). Deprived SES has been linked with poor survival in a variety of myeloid and lymphoid hematologic malignancies and increased HSCT-related mortality.
Patients with higher SES are more likely to undergo HSCT than patients with mid- or low-SES (72% versus 59% and 52%, respectively). Patients with higher SES often find a smoother referral pathway to academic medical centers and specialists.
Addressing HSCT disparities necessitates a comprehensive understanding of how socioeconomic factors influence the entire cancer trajectory.
Financial Factors
More than 37 million Americans do not have health insurance today, and 41 million have inadequate access to care. SES and insurance coverage are intricately entwined, and the type of insurance a patient possesses significantly influences access to HSCT. Medicaid enrollment is associated with lower HSCT use and outcome disparities among adult and pediatric HSCT recipients. Uninsured or underinsured individuals often need help in gaining approval for transplantation procedures or may find themselves limited in their choice of transplant centers.
The financial strain associated with HSCT, encompassing pretransplant conditioning, the transplant procedure, and post-transplant care, can be overwhelming for patients with lower SES, potentially affecting their ability to proceed with recommended treatments. In addition to limited financial resources, lack of health literacy among individuals with lower SES contributes to delays in detecting hematologic disorders or malignancies that may eventually warrant HSCT.
Location Limitations
Patients in underserved or economically disadvantaged regions may encounter logistic obstacles in reaching healthcare centers equipped with advanced diagnostic tools and treatment services. An estimated 48% and 79% of the U.S. adult population and 43% and 72% of the pediatric population have access to an HSCT facility within 30 and 90 minutes' travel time from their homes, respectively. Those geographic disparities may elongate symptom onset and delays definitive diagnosis, adversely affecting subsequent treatment success.
Timely Treatments
Patients with lower SES may have limited financial resources that can hinder regular health check-ups, and they are less likely to engage in preventive screening. Those factors create a perfect storm for late diagnoses, reducing the likelihood of successful treatment outcomes.
The diagnostic and referral pathway to HSCT involves a series of comprehensive evaluations and consultations, and those costs can be prohibitive for patients with limited financial resources. From imaging studies to laboratory tests and consultations with transplant specialists, the financial burden may lead to delays or avoidance of crucial steps in the referral pathway.
Psychosocial Impact on Decision-Making
Patients facing economic challenges may experience heightened stress and anxiety, affecting their ability to make informed decisions about the treatment pathway. Limited social support can potentially hinder patients from actively engaging in discussions about transplantation, leading to delays in the decision-making process. Caregivers provide essential support to patients undergoing HSCT, but they also face challenges such as taking time off from work, changing or leaving their employment, dealing with decreased income and savings, and facing challenges in managing expenses. A comprehensive understanding of these psychosocial dimensions is essential to appreciate the multifaceted challenges patients and caregivers face and to develop interventions that address the holistic needs of the HSCT population.
How Nurses Can Make a Difference
By shedding light on the challenging relationship between SES and the HSCT process, oncology nurses can contribute to the ongoing discourse on healthcare equity, advocating for systemic changes that prioritize inclusivity and fairness in the journey of patients facing the prospect of HSCT. At a high level, oncology nurses can advocate for initiatives focused on improving healthcare accessibility, increasing awareness, and implementing policies that mitigate economic barriers, such as:
- Policies to reduce financial barriers, such as subsidizing diagnostic tests and treatment costs
- Initiatives focusing on increasing healthcare literacy
- Community outreach programs
- Subsidized healthcare services for economically disadvantaged populations help bridge the gap in access to preventive care
- Cultural competence and sensitivity in healthcare delivery to create an inclusive environment that recognizes and addresses the psychosocial challenges associated with HSCT
These steps can help to ensure that individuals from all socioeconomic backgrounds have equitable opportunities for timely diagnosis and subsequent access to HSCT.
Oncology nurses can also work with the interprofessional cancer care team to optimize healthcare delivery for allogeneic HSCT recipients by:
- Improving care coordination among primary care physicians, referring hematologists and oncologists, and transplant centers
- Referring patients to financial counseling, assistance programs, and community resources
- Enlisting social workers and care coordinators in gathering appropriate patient resources, including:
- Connecting patients with grants to offset out-of-pocket costs
- Assessing caregiver support (programs often require HSCT recipients to have a dedicated caregiver)
- Helping with local housing if patients must temporarily relocate to be close to the transplant center
- Creating and implementing tools to assess patients’ and caregivers’ social challenges
- Recommending psychosocial support for caregivers, including an increased support network, emotional support, self-care, and respite care