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Working Without a Net: Leukemia and Lymphoma Survivors’ Perspectives on Care Delivery at End-of-Treatment and Beyond
Authors:Carla Parry PhD  MSW  Elizabeth Morningstar BA  Jeffery Kendall PsyD  Eric A Coleman MD  MPH
Affiliation:1. Division of Health Care Policy and Research , University of Colorado Denver School of Medicine , Aurora, CO, USA;2. Department of Sociology , University of Colorado Boulder , Boulder, CO, USA;3. Exempla Saint Joseph Hospital , Denver, CO, USA
Abstract:This study explored survivors’ perspectives on care delivery and supportive care needs during reentry. Fifty-one individual interviews were conducted with adult leukemia and lymphoma survivors, 3 to 48 months from treatment cessation. Survivors reported poor continuity of care across the patient–survivor transition, difficulty finding appropriate information/services, lack of preparation, lack of support for survivorship issues, and inadequate or poorly timed follow-up as factors contributing to adjustment difficulties at end of treatment and beyond. Improved care coordination is needed after active treatment, including use of an exit interview and delivery of services that are more congruent and better timed to meet ongoing and emergent survivorship needs.
Keywords:care transitions  reentry  survivorship  psycho-oncology  care coordination  health services  oncology health services research
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