title: Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients.
abstract: OBJECTIVE
  Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship.
  
  
  METHODS
  We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs.
  
  
  RESULTS
  Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery.
  
  
  CONCLUSIONS
  Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers.
  
  
  CONCLUSIONS
  "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.
authors.affiliation: University of California, Merced, School of Social Sciences, Humanities, & Arts, Merced, California, United States of America.|University of California, San Francisco, Department of Anthropology, History, and Social Medicine, San Francisco, California, United States of America.|Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California, United States of America.
authors.forename: Nancy J
authors.identifier: http://orcid.org/0000-0002-2269-3341
authors.initials: NJ
authors.lastname: Burke
authors.affiliation: University of California, San Francisco, Department of Anthropology, History, and Social Medicine, San Francisco, California, United States of America.
authors.forename: Tessa M
authors.initials: TM
authors.lastname: Napoles
authors.affiliation: Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California, United States of America.
authors.forename: Priscilla J
authors.initials: PJ
authors.lastname: Banks
authors.affiliation: Breast Care Disparities Program, San Francisco General Hospital, San Francisco, California, United States of America.
authors.forename: Fern S
authors.initials: FS
authors.lastname: Orenstein
authors.affiliation: Breast Care Disparities Program, San Francisco General Hospital, San Francisco, California, United States of America.|School of Medicine, University of California, San Francisco, San Francisco, California, United States of America.
authors.forename: Judith A
authors.initials: JA
authors.lastname: Luce
authors.affiliation: University of California, San Francisco, Department of Anthropology, History, and Social Medicine, San Francisco, California, United States of America.|Helen Diller Family Comprehensive Cancer Center, University of California, San Francisco, San Francisco, California, United States of America.
authors.forename: Galen
authors.initials: G
authors.lastname: Joseph
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000523:psychology*; D003266:Continuity of Patient Care; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D000067010:Literacy; D008875:Middle Aged; D015996:Survival Rate; D017741:Survivors / Q000523:psychology*; D014481:United States