Cultural Adaptation of a Supportive Care Needs Measure for Spanish-Speaking Latino Cancer Survivors

Background: Identification and assessment of the supportive care needs of cancer survivors is crucial as survivors continue to experience physical and psychosocial concerns beyond the treatment phase. In a time of limited resources, needs assessment tools can help to identify individuals who would most likely benefit from targeted supportive interventions. While several validated English-language cancer-related supportive care needs measures exist, none have been culturally adapted to identify the needs specific to Spanish-speaking Latino cancer survivors.

Methods: To culturally adapt the English-language Cancer Survivor Unmet Needs (CaSUN) measure, a series of iterative and group consensus-building approaches were employed.  Steps included: translation and back-translation, focus groups with cancer survivors (n=18) and providers (n=5), cognitive interviews with survivors (n=12), and ongoing input from the project’s community advisory board (CAB). 

Results: We describe the qualitative, iterative and group consensus-building approaches used to translate and adapt an instrument. Data reveal that simple translation is not enough and culture specific issues need to be addressed. We ensured the cultural and linguistic relevance of the measure’s domains, added culturally relevant items that were missing from the original measure, addressed translation issues related to regional variations in the Spanish language, and revised the format to improve understandability, comprehension and overall acceptability.

Conclusion/Implications: Research with ethnic minority populations requires instrumentation that is cultural and linguistically relevant. The findings shed light on the importance of using qualitative and participatory methods to adapt existing instruments to ensure they are inclusive of the experiences and needs of diverse cancer survivors.