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Language Barriers Limit Patient-Reported Outcomes in Cancer Care

Patient-reported outcome tools built for English proficient (EP) patients can help improve cancer outcomes for Spanish-speaking patients, but language barriers restrict their participation.

Patients with limited English proficiency (LEP) are excluded from patient-reported outcome (PRO) measures due to language barriers. Leaving them out reduces the opportunity for better cancer treatment and outcomes, according to a recent study published in JAMA Network Open.

Already, LEP patients are challenged by unique barriers to cancer care access, the researchers mentioned.

Language barriers make patient-provider communication more difficult and reduce the availability of healthcare information for LEP patients. As a result of these challenges, LEP patients may face more cancer care delays, lower enrollment in cancer clinical trials, and more interruptions to cancer care due to unplanned emergency department (ED) visits.

Patient-reported outcomes (PROs) have improved treatment outcomes, survival, and health-related quality of life in the care of patients who are English proficient (EP), the report stated.

“Recognizing the impediments to cancer care faced by the LEP population, and that electronic patient-reported outcome tools (ePROs) are associated with better outcomes and a reduction in resource use, we sought to understand the opportunities to improve these tools to address the needs of LEP patients,” Elena García Fariña, clinical research coordinator at Dana-Farber Cancer Institute and lead study author, and colleages wrote in the study.

“Given that Spanish is the most spoken language other than English in the US, and that it’s spoken by 9.1 percent of people in Massachusetts, we decided to focus on this population,” Fariña et al explained.

The study included English-speaking and Spanish-speaking LEP patients with cancer receiving oral chemotherapies to examine attitudes toward ePROs and electronic tools used to manage adherence and symptoms related to oral therapies. 

The study findings showed that EP patients generally had positive attitudes towards oral cancer-directed therapies (OCDT). However, EP patients were also uninterested in symptom reporting through ePROs.

EP patients expressed that managing care through ePROs was difficult as they were too busy focusing on their illness, and some found it too personal.

The lack of information regarding OCDT given by providers caused many LEP patients to dislike and fear oral therapy. In addition, LEP patients did not like the side effects associated with their treatment.

Spanish-speaking people reported negative patient-provider experiences, as they felt clinicians downplayed their concerns.

Contrary to EP patients, Spanish-speaking patients were willing to use electronic tools, including ePRO reporting.

PROs can be helpful in improving communication barriers between patients and the care team, the report stated.

“An electronic treatment management tool would provide an additional mode for physician-patient exchange of information,” Fariña and colleagues stated. “Integrating ePROs into such a tool would be particularly helpful, as it would provide a standardized and validated record of patient symptoms to manage them.”

“Our results indicate that even a tool built for EP patients may have substantial acceptability among LEP patients, particularly if language concordance is achieved,” Fariña and colleagues continued. “Where some might exclude LEP patients from technology-based interventions because of perceived difficulties in achieving language concordance, our findings support the inclusion of LEP particularly as an opportunity to address persistent gaps in cancer care for LEP patients.”

Further, PROs in oncology care can be implemented to increase symptom awareness and offer more efficient consultations.

The success of PROs depends on effective administration and adoption, which is contingent upon effective communication between patients and clinicians, researchers stated.

The widespread interest in ePROs is partly because patients want to manage their care through technology, researchers stated.

According to an unrelated 2020 study, patients found that using ePRO improved their cancer care experience.

"Our prior research showed that using a web-based system for patients to self-report symptoms to their cancer care team improves patient satisfaction, quality of life, physical function, reduces emergency room visits, and lengthens survival," Ethan Basch, MD, MSc, director of UNC Lineberger's Cancer Outcomes Research Program and the Richard M. Goldberg Distinguished Professor and chief of oncology at the UNC School of Medicine, said.

Patients in the intervention clinics received weekly prompts to report their PROs using a web- or telephone-based platform.

PROs included pain, nausea, depression, overall functional status, and financial health. When patients reported worsening or severe symptoms in any of those categories, their clinical teams received a notification and prompt to intervene.

"There is clearly a lot of enthusiasm from patients to connect to their care team through electronic real-time approaches, and providers also recognize this value, but we know it isn't perfect," Basch said. "Our findings lay a path forward for determining the best ways to integrate patient-reported outcomes in oncology practice.

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