Clinical Matters: Addressing Social Needs in Women With Gynecologic Cancer
Gynecologic cancer is defined as any variety that begins in a women’s reproductive organs; it encompasses, among others, cervical, ovarian, uterine, vaginal, and vulva cancers. Rates of both incidence and death vary not only by type of gynecologic cancer but also by social background and support structures. In 2018, cancer of the corpus uterus (endometrial cancer) ranked fourth in incidence among American women. While ovarian cancer didn’t rank among the top 10 for new cases, it remained a leading cause of cancer-related death—the fifth most common.1 As focus on social determinants of health increases, researchers turn their attention to the social needs that affect health outcomes in women with gynecologic cancer.
Psychological distress can negatively influence cancer survival rates. Studies in humans and in mice have shown that psychological distress may promote angiogenesis (increasing generation of red blood cells that feed tumors) and metastasis.2 Factors such as isolation, fear, worry, and fatigue all contribute to an increase in psychological distress.2,3 And while emotional distress is an understandable companion to cancer, certain social and structural components can increase this distress.
What Does the Research Say?
Among the survey participants, the most frequently reported unmet need was for help reading hospital materials. “This was not related to the language that hospital materials were written in because all the materials were in Spanish as well. I think this is related to one, lack of literacy and ability to read, and two, lack of health literacy and ability to understand medical terminology,” Sinno says. Other unmet social needs included the need for someone to talk to (20%), companionship (14.8%), and difficulties related to housing instability (13.3%), perceived financial strain limiting medical care (13.3%), food insecurity (12.6%), and transportation (8.9%). Additionally, 39.3% of patients felt that they needed assistance with social needs, and 5.2% said their needs were urgent.4 “I don’t think there is a hierarchy,” Sinno says. “I think some needs are more prevalent than others and different needs impact different outcomes. For example, psychological distress was impacted by lack of safety at home, whereas treatment interruption was more likely impacted by lack of transportation. Different needs have different consequences.”
An unrelated review examined the effects of health care disparities and social barriers on the experience and survival of ovarian cancer patients. The review found that language, geographic, and travel barriers along with differences in comorbidity and different treatment plans all seemed to have a higher impact on five-year survival rate than did genomic and biological barriers. The study examined the relation to ethnic and racial differences and found that although five-year survival rates have increased for white women, they have dramatically decreased for black women, who reported less likelihood of receiving guideline-recommended care. Overall, the care given to patients with lower socioeconomic status was less in line with National Comprehensive Cancer Network guidelines. These guidelines are the recognized standard for clinical direction and policy in cancer care; they are also the most frequently updated. In addition to these barriers to care, patients with lower health literacy and less access to health care systems also reported poorer outcomes.5
In Sinno’s study, researchers responded to participants who needed help reading hospital materials by providing a cancer care navigator who consulted with women and offered support and education. The result was open communication and adherence to care recommendations. Whereas a cancer care navigator can prove beneficial, using an ad hoc interpreter may lead to more error than using no interpreter at all.6 This was primarily attributed to erroneous hypothetical explanations and misinterpretation by the interpreter. The result was a departure from a shared-decision model of health care. Overall, the studies point to a common theme: Communication is a crucial part of successful care.
As Sinno notes, different social needs have different consequences. While communication may directly affect the course of care, barriers such as transportation can directly influence continuation of care. A recent study specifically evaluated the role of transportation in treatment adherence among cancer patients. Results suggested that “lack of access to transportation has a significant impact on cancer patients’ decisions with respect to stopping or continuing treatments. Limited access to private vehicles will likely lead to the stopping of radiotherapy. In addition, trip frequency and trip length to caregivers influence the patients’ continuing or quitting chemotherapy.”7
An Ontario-based study identified 20,228 patients diagnosed with endometrial cancer between 2009 and 2017 with the goal of understanding the impact of social determinants of health and disease presentation. The study found that patients in highly marginalized communities were more likely than others to have advanced disease state at presentation.8 Because Canada has a universal health care system, the difference in care wasn’t necessarily related to financial means.
Similarly, in the study conducted by Sinno and colleagues, perceived lack of financial means was identified as a social barrier but shouldn’t have affected patients’ access to treatment. “‘Perceived’ is used because patients who are seen at Olive View typically qualify for 100% care coverage through one of the insurance programs covered by the state or federal government. The lack of finances is real but should not impact ability to pay for care as the care is completely covered. The hospital did have a small fund for transportation, and we utilized private organizations that offered free rides for transportation.”
Both the study examining ovarian cancer and the Ontario study regarding endometrial cancer found an association between social barriers and disease stage at presentation. Considering the statistics on disease stage and survival rates, this singular consequence of socioeconomics could be the difference between life and death. The survival rate for localized and regional ovarian cancer is 93% and 75%. Once the cancer becomes distant, the survival rate drops to 31%.9 Concerning endometrial cancer, survival rates are 95% when the tumor is localized, 69% when regional, and only 17% when distant.10 Increasing rates of early detection could significantly lower the number of deaths from both cancers. Addressing the social barriers to screenings and treatment plays a key role.
The Role of Providers
Providing patients with cancer care navigators can have a positive impact on communications, directly affecting the shared decision-making process and decreasing patient distress. Communication is also connected to a patient’s understanding of financial aid and payment options.
Regarding food instability, providers can connect patients to outside services such as, the Hunger + Health division of Feeding America and Meals on Wheels.11,12 Providers are also encouraged to provide active referrals, typically provider to provider, which are shown to be more effective than simply suggesting options to patients.13
Providers can also connect with outside services to assist patients with transportation needs. Services that help with transportation services include American Cancer Society’s Road to Recover Program, Angel Wheels to Healing, Fisher House Foundation, and National Patient Travel Center.14
Other social aspects of cancer, such as isolation, fear, and worry can be addressed through support groups and open channels of communication. Knowing that assistance is available can help patients feel less alone and more cared for. Education is key, both for patients and their friends and families. Having a support network is important, but it’s also necessary for that network to understand how to care for and relate to the patient.
“The social determinants of health impact social need. Unmet social need causes distress. Distress has physiologic repercussions that lead to worse cancer specific outcomes. I do not think the social needs are related to patient-doctor relationship but a good relationship can help impact them. The idea is that the overall structure of health care cannot be fixed at the individual provider level, but individual social needs can directly be impacted, as was done in our study,” Sinno says.
Providers face many demands, including time constraints and budgetary limits. Having a thoughtful and systematic approach to social needs can help streamline the process. Ongoing relationships with outside services, support groups, and cancer care navigators can directly incorporate social care into the medical care model, improving health outcomes.
— Jennifer Lutz is a freelance journalist who covers health, politics, and travel. She’s written for both consumer and professional medical magazines as well as popular newspapers. Her writing can be found in Practical Pain Management, Endocrine Web, Psycom Pro, The Guardian, New York Daily News, Thrive Global, BuzzFeed, and The Local Spain. In addition to journalism, Lutz works as a strategies and communication consultant for nonprofits focused on improving community health.
2. Psychological stress and cancer. National Cancer Institute website. https://www.cancer.gov/about-cancer/coping/feelings/stress-fact-sheet. Updated December 10, 2012. Accessed September 1, 2021.
3. Peters L, Brederecke J, Franzke A, de Zwaan M, Zimmermann T. Psychological distress in a sample of inpatients with mixed cancer — a cross-sectional study of routine clinical data. Front Psychol. 2020;11:591771.
4. Nyakudarika NC, Holschneider CH, Sinno AK. Universal social needs assessment in gynecologic oncology: an important step toward more informed and targeted care in the public safety net. Cancer. 2021;127(20):3809-3816.
5. Kaufman M, Cruz A, Thompson J, et al. A review of the effects of healthcare disparities on the experience and survival of ovarian cancer patients of different racial and ethnic backgrounds. J Cancer Metastasis Treat. 2019;5:13.
6. Flores G, Abreu M, Barone CP, Bachur R, Lin H. Errors of medical interpretation and their potential clinical consequences: a comparison of professional versus ad hoc versus no interpreters. Ann Emerg Med. 2012;60(5):545-553.
7. Etminani-Ghasrodashti R, Kan C, Mozaffarian L. Investigating the role of transportation barriers in cancer patients’ decision making regarding the treatment process. Transp Res Rec. 2021;2675(6):175-187.
8. Helpman L, Pond GR, Elit L, Anderson LN, Seow H. Endometrial cancer presentation is associated with social determinants of health in a public healthcare system: a population-based cohort study. Gynecol Oncol. 2020;158(1):130-136.
9. Ovarian cancer survival rates. American Cancer Society website. https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/survival-rates.html. Updated January 25, 2021. Accessed September 3, 2021.
10. Survival rates for endometrial cancer. American Cancer Society website. https://www.cancer.org/cancer/endometrial-cancer/detection-diagnosis-staging/survival-rates.html. Updated January 26, 2021. Accessed September 3, 2021.
11. Addressing food insecurity in health care settings. Feeding America website. https://hungerandhealth.feedingamerica.org/explore-our-work/community-health-care-partnerships/addressing-food-insecurity-in-health-care-settings/. Accessed September 3, 2021.
12. Meals on Wheels people. Meals on Wheels website. https://www.mowp.org/. Accessed September 3, 2021.
13. Connecting food-insecure individuals to resources. Health Care Without Harm website. https://foodcommunitybenefit.noharm.org/resources/implementation-strategy/connecting-food-insecure-individuals-resources. Accessed September 3, 2021.
14. Transportation resources. CancerCare website. https://www.cancercare.org/publications/303-transportation_resources. Accessed September 3, 2021.