Psychological and emotional needs specific to populations with cancer are often overlooked in clinical research, including those of adolescents, young adults, immigrants, and people of lower socioeconomic status.
When considering the physical and mental effects of cancer diagnosis and recovery, several psychological and emotional needs have been cited in previous research as exacerbating patient outcomes in the past.
Despite in-person/virtual support groups and therapy seeking to address the mental challenges of cancer, such as feelings of depression and loneliness, significant gaps remain in managing the personalized issues that present to populations often underserved in oncology care and clinical research, according to experts interviewed by The American Journal of Managed Care® (AJMC®).
In an email exchange with AJMC®, Michael Roth, MD, co-director of the Adolescent and Young Adult (AYA) Oncology Program at the University of Texas MD Anderson Cancer Center, noted the myriad developmental challenges that face even AYAs without cancer who are becoming or learning how to become more independent, such as going away for school, starting their first job in their careers, starting a family, or developing new relationships.
Unmet Needs in AYAs With Cancer
Defined as people between 15 and 39 years old, Roth said that AYAs are often overlooked in cancer care and that significantly more attention is given to younger children and older adult patients.
Notably, the 90,000 AYAs who receive a cancer diagnosis each year and the more than 500,000 AYA cancer survivors currently living in the United States today have to manage the challenges brought by their diagnosis while delaying normal growth opportunities in life.
“AYAs need a special focus on their education, vocational training in their careers, and how cancer impacts or halts that progression. AYAs need special attention on their mental health and psychosocial health. They need special attention on their sexual health and relationships,” said Roth.
“All of these life issues, which are challenging without cancer, just become much more complicated, and unfortunately, many providers do not ever address any of these issues. AYAs are often left on their own to struggle through these issues as they struggle through cancer treatment.”
In a soon-to-be published analysis co-authored by Roth, only approximately 20% of phase 3 trials were found to capture quality of life (QOL) information among AYAs with cancer during and before treatment, indicating a significant gap in comprehension regarding these populations.
Adding that providers do not typically do a sufficient assessment of patients’ QOL, which often correlates with important cancer care implications such as symptom burden and treatment tolerance, Roth said that very little is known about the health and health-related QOL outcomes of AYAs with cancer.
“That's why it's so important that we have patients provide their own perspectives through the use of inventories that measure patient-reported outcomes. If we don't ask, we'll never know what's happening with our patients. And most importantly, we'll never know how we can intervene and improve their short-term and long-term outcomes.”
These concerns fueled the recent implementation of the AYA Patient-Reported Outcomes Task Force, a new task force co-chaired by Roth that was launched last year by the Children’s Oncology Group and funded through the National Cancer Institute’s (NCI) Childhood Cancer Data Initiative.
Bringing together experts from across the NCI’s clinical trials network, both pediatric and medical oncology, Roth said that the goal of the task force is to standardize and harmonize the patient-reported outcomes captured in AYA cancer clinical trials to try to understand what happens to patients who receive a cancer diagnosis and go through their cancer journey.
With minimal information available on how AYAs do in terms of their symptoms, toxicity in health throughout treatment, and well after treatment into survivorship, Roth said that the task force wants to better understand the similarities and differences across various cancer diagnoses and treatment approaches.
“Until we have this basic data, it's really challenging to intervene to improve patient outcomes, because we're starting from a place where we just don't understand what the trajectory of health outcomes are for this population, which we believe is at high risk for toxicity and poor long-term health-related QOL,” said Roth.
“Measuring these data through patient-reported outcomes is absolutely essential, and now's the time to start doing it so we really can understand how we can improve and maximize patients’ health and long-term QOL.”
Prioritizing Communication in Cancer Care
With increasing diversification being reported in 2020 US Census Bureau data, a report issued recently by AMN Healthcare indicated that more than 50 languages other than English were commonly used in daily encounters between patients and health care providers—spearheaded by Spanish, which was used in 74% of discussions.
Despite the linguistic and cultural needs of US patient populations, services to accommodate non–English-speaking patients, who are more likely to be immigrants and of lower socioeconomic status, have largely lagged in adoption. In fact, prior research found that more than half of patients with limited English proficiency reported lack of access to medical interpreters and translated materials.
What impact can these gaps in communication and information have on health outcomes?
Seeking to investigate social needs and their influence as mediators of social determinants of health, Abdulrahman K. Sinno, MD, director of surgical research and education at University of Miami Health System, and fellow authors conducted a prospective, survey-based cohort study of 135 female patients with gynecologic cancer, who were primarily immigrants and of lower socioeconomic status, from a public safety-net hospital in Los Angeles.
In assessing patients for unmet social needs and distress, factors known to affect QOL and survival in patients with cancer, 65.2% and 36.3% of patients were associated with each outcome, respectively. Moreover, those linked with these variables were found to be at greater risk for emergency department (ED) visits, hospital admissions, and treatment interruptions.
“In this population, we were able to find the most prevalent social needs, including needing help reading hospital materials (30.4%), lack of transportation (8.9%), food insecurity (12.6%), and housing instability (13.3%),” said Sinno.
Although some issues that contribute to disproportionate health care access and equity may not be able to be resolved by physicians, such as poverty or immigration status, Sinno highlighted that many of the social needs cited by patients can be improved through provider interventions.
“Whether a patient is Black, White, or Hispanic, if she's an immigrant, if she's poor or rich, if she has poor transportation, I can intervene and provide transportation,” noted Sinno. “If a patient can't make it to the clinic, then they’re not going to come and tell you about the worsening symptoms that they have. It's way cheaper to pay for a $20 Uber ride than a $5000 ED visit for something that could have been mitigated.”
Speaking further on the study, Sinno said that although the study authors were not initially planning on intervening, they identified so many patients with food insecurity that they started to connect participants with existing services that provide food assistance, such as Meals on Wheels and Project Angel Food.
“It might not be like sending a patient 5 meals a week, but that could be the difference between some of the patients not eating enough so that their family can eat and them eating enough to be able to tolerate their treatments.”
Integrating a registered dietitian was also cited by Sinno, whose clinical practice took a proactive approach in providing patients with nutrition advice that can improve care outcomes, including what to and what not to eat, how to prevent nausea, and how to increase calorie intake when experiencing malignancy in the abdomen.
With countless interventions available to address social determinants of health, screening for these social needs is ultimately the only way to recognize risk and develop mitigation tools.
“The first tenet of consent is that the patient understands what you're saying. It's unfair that only patients who have low socioeconomic status end up not understanding what they are getting. And also on a practical level, if you're giving them these sorts of instructions, and they don't understand their discharge instructions, they're going to end up in the ED again,” concluded Sinno.
“The outcomes from these minor interventions are so large that it begs the question: Why aren't we all doing this? And why aren't hospital systems investing more in these social mitigation tools that can not only improve outcomes, but also be cost-effective?“