Perspectives on Conversations About Costs of Cancer Care of Breast Cancer Survivors and Cancer Center Staff: A Qualitative Study.

Background: Despite recommendations to discuss the cost of care (CoC) with patients with cancer, little formal guidance is available on how to conduct these sensitive conversations in ways that are acceptable to both patients and providers. Objective: To explore the perspectives of patients and medical and nonmedical cancer center staff on CoC conversations. Design: In individual interviews, participants were asked to discuss the content of, timing of, and ideal person to hold CoC conversations. Interviews were transcribed verbatim. Content was analyzed to identify emerging essential elements. Setting: Division of Preventive Medicine, University of Alabama at Birmingham. Participants: 42 women aged 60 to 79 years with a history of breast cancer and 20 cancer center staff (6 physicians, 4 nurses, 5 patient navigators, 3 social workers, and 2 billing specialists). Results: Both patients and providers identified reassurance and action as essential elements of CoC conversations. Participants expressed the importance of reassurance that recommended medical care would not be affected by affordability challenges. Action was intended as discussions on ways to help patients cover treatment-related costs, such as discussion of payment plans or linkage to financial resources. Optimal timing for CoC conversations was felt to be after an initial consult visit but before treatment started. The person to hold these conversations should be compassionate, helpful, and knowledgeable of the patient's specific situation (for example, treatment plan, insurance coverage) and of the resources available to attain the patient's goals of care. Limitation: Interviews were limited to older breast cancer survivors and staff at 1 institution. Conclusion: Conversations about CoC extend beyond discussing costs and must be sensitive to the vulnerability experienced by patients. These findings can guide training of personnel involved in CoC conversations. Primary Funding Source: Robert Wood Johnson Foundation.

The role of social support in posttreatment surveillance among African American survivors of colorectal cancer.

African Americans are less likely than other groups to receive appropriate surveillance after colorectal cancer (CRC) treatment. The objective of this study is to qualitatively explore the role of social support in post-CRC treatment surveillance and ultimately, inform interventions to promote surveillance in African American survivors of CRC. Interviews were conducted with 60 African American survivors of CRC recruited from the Cancer Care Outcomes Research and Surveillance (CanCORS) study and the Alabama Statewide Cancer Registry. Interviews were recorded and transcribed. Transcripts were reviewed and coded independently by the authors. The NVivo software package was used to facilitate coding and data management. Survivors were from 4 to 6 years post diagnosis, 57% female, 60% older than age 65 years, 57% from rural Alabama, 30% with stage 1, 32% with stage 2, and 38% with stage 3 disease. Material and emotional social support from family and one's faith community were cited as playing an important role in coping with the disease and posttreatment surveillance. Survivors who reported being adherent with posttreatment surveillance recommendations (according to stage of disease based on self-report of colonoscopy, computed tomography scans, and blood work) reported more religious material and non-material social support, and support from other survivors of CRC. In these African American survivors of CRC, support from family, other survivors of cancer, and the faith community was perceived as being important for adherence to posttreatment surveillance. Interventions to increase posttreatment surveillance in this population may be enhanced by including components that emphasize familial, other cancer survivor, and religious support.

Surveillance instructions and knowledge among African American colorectal cancer survivors.

INTRODUCTION: African Americans are less likely than other racial/ethnic groups to receive appropriate surveillance, an important component of care to achieve better long-term outcomes and well-being after colorectal cancer (CRC) treatment. This study explored survivors' understanding of surveillance instructions and purpose. PATIENTS AND METHODS: Interviews with 60 African American CRC survivors were recorded and transcribed. Compliance with surveillance guidelines was defined by disease stage and self-reported tests. Four coders (blind to compliance status) independently reviewed transcripts. Frequency of themes was reported by compliance status. RESULTS: Survivors (4 to 6 years postdiagnosis; women, 57%; age ≥ 65 years, 60%; rural location, 57%; early-stage disease, 62%) were 48% noncompliant. Most survivors reported receiving surveillance instructions from providers (compliant, 80%; noncompliant, 76%). There was variation in recommended frequency of procedures (eg, every 3 or 12 months) and in importance of surveillance stressed by physicians. Most survivors understood the need for follow-up (compliant, 87%; noncompliant, 79%). Lack of knowledge of/interest in surveillance was more common among noncompliant individuals (compliant, 32%; noncompliant, 52%). CONCLUSION: Patients' limited understanding about the importance of CRC surveillance and procedures may negatively affect compliance with recommendations in African American CRC survivors. Clear and enhanced communications about post-treatment recommendations in this population are warranted.