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The potential of survivorship care plans in primary care follow-up of minority breast cancer patients.

ABSTRACT: BACKGROUND: When the clinical care of minority breast cancer survivors is transferred from oncology settings to primary care, quality of care may be compromised if their primary care providers do not have adequate cancer treatment records and follow-up care guidelines. Survivorship care plans (SCPs) given to survivors before they transition to primary care settings are designed to improve the transfer of this information. This study examined these issues in a sample of minority breast cancer survivors. DESIGN: During four focus groups with minority breast cancer survivors, data were collected about the types of information survivors remember receiving from their oncologists about follow-up health care needs. Survivors were also asked their opinions on the value and content of a survivorship care plan. RESULTS: Minority breast cancer survivors received variable amounts of information about their cancer treatments. They were dissatisfied with the amount of information they received on cancer-related side-effects, including race-specific information. The American Society of Clinical Oncology's breast cancer survivorship care plan was viewed as important, but too highly technical and limited in information on side-effects and self-care approaches. CONCLUSIONS: Survivorship care plans may help increase information transfer from oncologists to patients and primary care providers, but the content of care plans needs to be adapted to minority patients' concerns. Primary care physicians may be challenged by survivors to explain recommended surveillance guidelines and to respond to untreated physical and psychosocial problems.

SUBMITTER: Burg MA

PROVIDER: S-EPMC2763149 | biostudies-other | 2009 Nov

REPOSITORIES: biostudies-other

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Project description:The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n = 29) and clinicians (n = 18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating user-centered documents.

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The potential of survivorship care plans in primary care follow-up of minority breast cancer patients.

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