Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients

Abstract

PurposeDespite 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.MethodsWe 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.ResultsAnalysis 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.ConclusionsOur 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.Implications for Cancer Survivors“Clear and effective” communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.

Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis

“…Their information needs were often triggered by the appearance of symptoms of the primary tumor (eg, lumps, pain, or discharge) [ 9 , 26 , 28 , 31 - 33 , 36 ] because patients’ panic and uncertainty increased before diagnosis. Nine studies also reported side effects caused by the treatment (eg, irregular menstruation, arm complications, fatigue, sexual dysfunction, lymphedema, and pain) [ 25 , 27 , 29 , 30 , 32 , 34 , 35 , 37 , 38 ] that would last from the treatment to the survivorship stages and could lead to specific information needs.…”

“…In addition, the doctors sometimes did not provide patients with enough information about breast cancer treatment options and simply made the treatment decision without discussion with the patient, which left the patient with more uncertainty [ 41 ]. The patients also had many questions (eg, who and how often should they see the doctor) as they transitioned from the cancer care group to the primary care physician shortly after treatment (in phase 3) [ 30 , 37 ]. Patients were also confused when health care professionals provided them with inconsistent information (eg, tamoxifen discontinuation) in the survivorship stage [ 30 ], triggering the need for more exact information.…”

Health Information Seeking Behavior of Breast Cancer Patients: A Qualitative Study

“…For this reason, the institute of medicine has called for more research on the awareness of breast cancer patients about treatment options. (18) On the other hand, promoting self-care and health literacy, one of the most important functions of health systems, is directly influenced by the health information seeking behavior. (11) Therefore, studies on the breast cancer patients' health information seeking behavior are beneficial.…”

“…-Information about the management of side effects and self-care strategies: Includes some information about the management of cancer-related psychological issues such as anxiety and stress, self-care strategies, disease management and its negative effects at home, the diet, physical activity and tobacco use during the treatment periods, recovery methods and what the patients can do to help themselves (1,12,18,31,58) .…”

Understanding Posttreatment Patient‐Provider Communication and Follow‐Up Care Among Self‐Identified Rural Cancer Survivors in Illinois

“…[6][7][8][9] Across health care systems and cancer types, posttreatment patient-provider communication is not standardized, and such heterogeneity in communication can increase survivorship risks associated with poor management of posttreatment care. [8][9][10][11][12] Cancer survivors who receive their care at settings that adhere to the Commission on Cancer (CoC) guidelines are required to receive a survivorship care plan. 13 Yet, many cancer survivors, such as those treated in non-CoC centers, face inequities in communication of survivorship care plans.…”