Symptom Burden, Palliative Care Needs, and Patient-Provider Communication Among Chronic Myeloid Leukemia Survivors

Abstract Background: Chronic myeloid leukemia (CML) patients are living longer, yet can be challenged by disease complications, adverse effects of treatment, and lifelong drug therapy. CML symptoms and treatment side effects (SEs) are often chronic, and patients may need care from a multidisciplinary team of specialists. The study objectives were to examine CML patients' symptom burden, palliative care needs, and experiences with health care team (HCT) communication. Methods: 310 people diagnosed with CML enrolled in the Cancer Support Community's Cancer Experience Registry and completed questions about CML history, treatment, and symptoms. Participants rated the extent to which 19 symptoms and SEs interfered with daily life (0= not at all ; 4= very much); ratings were summed into a symptom burden score (α=.89). Participants also rated 10 items assessing quality of patient-provider communication about SEs (0 = strongly disagree; 4 = strongly agree); items were summed into a SEs communication quality total score (α=.83). Bivariate associations between communication quality and sociodemographic, symptom history, and symptom burden variables were examined; significant variables were included in multiple linear regression analysis predicting SEs communication quality. Results: Participants were 68% female, 89% White; mean age was 56 years (SD=12); mean time since diagnosis was 5 years (SD=6). 65% reported hematologic remission, 42% cytogenic remission, 64% molecular remission; Conclusion: People with CML experience significant symptom burden and want more support with managing symptoms and side effects. Importantly, those reporting less satisfaction with health care team communication about side effects tended to report greater symptom burden, less confidence in coping with side effects, and greater desire for support in managing symptoms. The results from this study indicate the need for more comprehensive symptom management as part of CML survivorship care, including increased attention to symptom burden during health care team conversations and access to palliative and other supportive care services. Disclosures Mauro: Bristol-Myers Squibb: Consultancy. Buzaglo: Pharmacyclics, Inc: Research Funding; Pfizer Oncology: Research Funding; Novartis: Research Funding; Janssen Biotech, Inc: Research Funding; Genentech, Inc: Research Funding; Eli Lilly and Company: Research Funding; Celgene Corporation: Research Funding; Bristol-Myers Squibb: Research Funding; Boehringer Ingelheim: Research Funding; Bayer: Research Funding; Amgen Corporation: Research Funding; AbbVie: Research Funding; Takeda Oncology: Research Funding.