Access to Linguistically Appropriate Information for Blood and Marrow Transplant Patients: Results from Transplant Center Staff Survey

Abstract

Blood or marrow transplant (BMT) is a potentially curative treatment for numerous cancers and non-malignant disorders. BMT is a resource-intense treatment process, requiring patients to comprehend difficult health information and navigate a complex healthcare system. Linguistic and cultural barriers create additional challenges for patients with limited English proficiency (LEP) who may need translated information and interpretive services to make an informed decision about treatment. To identify information needs and gaps in language services for BMT patients with LEP, the National Marrow Donor Program® (NMDP)/Be The Match® administered a cross-sectional, web-based survey to 139 transplant centers (TCs) across the United States (U.S.). The survey yielded a 59% response rate. Findings show a significant need for translated patient education materials, especially in Spanish, Chinese, and Arabic, and practice gaps in the use of appropriate interpreters. Nearly one third of respondents indicated using family and friends to interpret for patients. The inability to locate educational resources in a specific language, lack of available bilingual staff, lack of a formal, centralized tracking system, and outdated tracking systems also pose significant barriers to meeting the language needs of BMT patients with LEP.

Patient perceptions of the readability and helpfulness of bilingual clinical forms: a survey study

“…Few studies have investigated the availability of translated materials [ 7 , 8 ] even though translations of procedural processes and information for caregivers have been reported as some of the most needed materials [ 10 ]. In one study, providers used Google Translate for healthcare materials, but only 57.7% of 260 medical phrases were accurate [ 11 ].…”

“…In one study, providers used Google Translate for healthcare materials, but only 57.7% of 260 medical phrases were accurate [ 11 ]. In the dental setting, the language preference of LEP patients is not typically recorded [ 9 ], and providers tend to be unaware of those preferences because the patients are unable to communicate them [ 10 ]. Further, because of difficulties communicating with LEP patients, dental specialists often chose a simpler treatment option, such as tooth removal, instead of a more complex treatment that requires multiple visits and more in-depth communication [ 3 ].…”

“…When translated clinical forms do exist, they are usually available in a limited number of languages [ 7 , 8 ]. For example, research suggests only 27% of medical clinics offer translated documents in Spanish [ 10 ], and only 7% of dental clinics provide printed translations in a language other than Spanish [ 8 ]. To overcome these language barriers, most private dental clinics use ad hoc interpreters because they are free and readily available [ 8 , 9 ].…”

The Fragile Web of Care: Ethnicity, Poverty, and Language in Acute Leukaemia

“…How would an acute leukaemia service be designed to care for patients in the most fragile situations? Some changes would be easy and low-cost compared to treatment expenditures—such as addressing the paucity of translated haemato-oncology written materials 13 or better usage of medical interpreters. We can learn from colleagues in haemoglobinopathy and HIV services who work closely with colleagues in psychology, social care, and community nursing to give holistic support, including through home and community visits.…”