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

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; <1% had not yet had a response to CML treatment; 3% had an initial response but were no longer responding. 88% indicated more than one health care provider manages their CML; of those, 72% were satisfied with care coordination. Respondents reported the following symptoms interfered (somewhat to very much) with daily life: fatigue (70%), muscle aches (57%), sleep disturbance (46%), loss of concentration/memory (42%), sexual or intimate relation problems (38%), bone pain (37%), rash or skin issues (35%), anxiety (34%), diarrhea (32%), sadness/depression (32%), nausea (31%), water retention around the eyes (31%), appetite change (29%), constipation (27%), hand/foot swelling (22%), infection (15%), sores not healing (12%), heart problems (7%), and excess lung fluid (7%). 52% believed their HCT prepared them to manage treatment SEs. 67% felt confident in their ability to cope or get help with treatment SEs. 41% reported that potential SEs at least somewhat affected treatment choice. 51% wished they had received more help with managing short-term SEs, and 59% with managing long-term SEs. 81% reported being satisfied with HCT communication about CML treatment, yet only 65% were satisfied with communication about treatment SEs, and 40% did not report the full extent of their symptoms/SEs to their HCT. 74% indicated it was "somewhat" to "very easy" to contact their HCT with questions or concerns, and 76% believed their HCT takes enough time to address concerns. Regression analysis indicated that three predictors explained 51% of the variance in SEs communication quality (R² = .51, F (3,268) = 93.68, p <.001). Poorer SEs communication quality was associated with less confidence in coping with SEs (semipartial r=.33, p <.001), more holding back from telling the HCT about SEs (semipartial r=−.34, p <.001), and wanting more help managing long-term SEs and symptoms (semipartial r=−.21, p <.001). Greater symptom burden was associated with poorer SEs communication quality in bivariate analysis (r=−.41, p <.001) but the relationship was only a trend in the multivariate model (semipartial r=−.07, p=.10).

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.