Towards developing a bilingual treatment summary and survivorship care plan responsive to Spanish language preferred breast cancer survivors

J Cancer Surviv. 2014 Dec;8(4):580-94. doi: 10.1007/s11764-014-0363-5. Epub 2014 May 25.

Abstract

Background: Treatment summary and survivorship care plan studies are at the forefront of research priorities with precedence for ethnic minority inclusion. This preliminary study joined the advocacy, scientific, and medical communities to inform the development and evaluation of the Treatment Summary and Survivorship Care Plan (TSSCP-S) template targeted for Latino breast cancer patients (LCA).

Methods: The development of the TSSCP-S began as modifications to the American Society of Cancer Oncology (ASCO) (TSSCP-ASCO) template via a transcreation process informed by 12 LCA survivors/advocates, and evaluated by 10 survivor/advocates and health professionals. The TSSCP-S template development was guided by the Shared Care, Psychooncology Models, and Contextual Model of Health Related Quality of Life.

Results: The bilingual TSSCP-S was independently evaluated by bilingual, survivor/advocates, and health professionals (n = 10). Preliminary analyses indicate that the TSSCP-S template was rated more favorably than the TSSCP-ASCO on the following domains: content (p = 0.02), clarity (p = 0.02), utility (p = 0.04), cultural and linguistic responsiveness (p = 0.03), and socioecological responsiveness (p = 0.01). Evaluators noted that the TSSCP-S template was more patient-centered, and endorsed the acceptability as well as the potential utility and applicability of the bilingual TSSCP-S template to appropriately guide surveillance and follow-up care.

Conclusions: Our findings indicate that the TSSCP-S achieved clinical, cultural, and linguistic responsiveness relevant to Latinos. Patient-centered TSSCP that are presented in a bilingual format are necessary to achieve the intended goals of TSSCP including appropriate patient information, education, and resources pertaining to their treatment, potential side effects, and recommended surveillance and follow-up care for English language limited patients. Additionally, our culturally responsive TSSCP-S development framework offers a model for TSSCP template development for targeted and underserved populations, including ethnic and linguistic minority cancer survivors.

Implications for cancer survivors: These data support the development and evaluation of a TSSCP targeted to an underserved, high-risk population, LCAs. Identifying methods to improve surveillance and follow-up guideline adherence may lead to improved clinical cancer outcomes and quality of life.

MeSH terms

  • Breast Neoplasms / mortality*
  • Breast Neoplasms / therapy*
  • Female
  • Hispanic or Latino / ethnology*
  • Humans
  • Language
  • Multilingualism*
  • Quality of Life
  • Survival Rate