Patterns of follow‐up care in adult blood cancer survivors—Prospective evaluation of health‐related outcomes, resource use, and quality of life

Abstract

Abstract Background Information about follow‐up care in blood cancer survivors is limited. The questionnaire‐based “Aftercare in Blood Cancer Survivors” (ABC) study aimed to identify patterns of follow‐up care in Germany and compare different types of follow‐up institutions. Methods The study's 18‐month prospective part compared the follow‐up institutions identified in the preceding retrospective part (academic oncologists, community oncologists, primary care physicians). The questionnaires were completed by the follow‐up physicians. Results Of 1070 physicians named by 1479 blood‐cancer survivors, 478 (44.7%) consented to participate. For provision of care, most oncologists relied on published guidelines, while most primary care physicians depended on information from other physicians. Survivors with a history of allogeneic transplantation or indolent lymphoma were mainly seen by academic oncologists, whereas survivors with monoclonal gammopathy, multiple myeloma, or myeloproliferative disorders were often seen by community oncologists, and survivors with a history of aggressive lymphoma or acute leukemia by primary care physicians. Detection of relapse and secondary diseases was consistently viewed as the most important follow‐up goal. Follow‐up visits were most extensively documented by academic oncologists (574 of 1045 survivors cared for, 54.9%), followed by community oncologists (90/231, 39.0%) and primary care physicians (51/203, 25.1%). Relapse and secondary disease detection rates and the patients' quality of life were similar at the three institutions. Laboratory tests were most often ordered by academic oncologists, and imaging by primary care physicians. Psychosocial issues and preventive care were more often addressed by primary care physicians than by oncologists. Conclusions Patients at high risk of relapse or late complications were preferentially treated by academic oncologists, while patients in stable condition requiring continuous monitoring were also seen by community oncologists, and patients with curable diseases in long‐term remission by primary care physicians. For the latter, transfer of follow‐up care from oncologists to well‐informed primary care providers appears feasible.

Keywords

• follow‐up study
• health‐related quality of life
• hematologic neoplasm
• survivorship