Patients with chronic myeloid leukemia (CML) often experience symptoms and treatment-related adverse events (AEs) that are chronic and may require care from an interdisciplinary team. A study sought to assess symptom burden, palliative care needs, and experiences with healthcare team communication in this patient population. Alexandra K. Zaleta, PhD, at the Research and Training Institute, Cancer Support Community in Philadelphia, PA, discussed the findings at the ASH Annual Meeting.

Researchers included 310 patients (mean age = 56 years, standard deviation [SD] = 12) with CML who were enrolled in the Cancer Support Community’s Cancer Experience Registry. They completed questions about their disease history, treatment, and symptoms, rating the extent to which 19 symptoms and AEs interfered with daily life (from 0 = not at all to 4 = very much), which were combined into a symptom burden score (alpha = 0.89). Participants also rated 10 items assessing quality of patient-provider communication about AEs (from 0 = strongly disagree to 4 = strongly agree), which were combined into an AE communication quality total score (alpha = 0.83).

A majority of patients were female (68%) and Caucasian (89%), and the mean time since diagnosis was five years (SD = 6). Most (65%) were in hematologic remission, 42% reported cytogenic remission, and 64% reported molecular remission. Less than 1% had not yet responded to treatment, and 3% experienced an initial response but were no longer responding.

Most patients (88%) indicated that more than one healthcare provider manages their disease, and 72% were satisfied with care coordination.

Respondents reported that the following symptoms interfered somewhat to very much with daily life.

  • Fatigue (70%)
  • Muscle aches (57%)
  • Sleep disturbance (46%)
  • Loss of concentration or memory (42%)
  • Sexual or intimate relation problems (38%)
  • Bone pain (37%)
  • Rash or skin issues (35%)
  • Anxiety (34%)
  • Diarrhea (32%)
  • Sadness or depression (32%)
  • Nausea (31%)
  • Water retention around the eyes (31%)
  • Change in appetite (29%)
  • Constipation (27%)
  • Hand or foot swelling (22%)
  • Infection (15%)
  • Unhealed sores (12%)
  • Heart problems (7%)
  • Excess lung fluid (7%)

More than half (52%) believed that their healthcare team prepared them to manage treatment AEs, and 67% felt confident in their ability to cope or receive help with AEs.

Forty-one percent of patients reported that potential AEs at least somewhat affected their treatment choice. About half (51%) said that they wished they had received more help with managing short-term AEs, and 59% wanted more help with long-term AEs.

Although 81% reported being satisfied with healthcare team communication about CML treatment, just 65% were satisfied with communication about treatment AEs, and 40% said they did not report the full extent of their symptoms to their healthcare team. Many (74%) indicated that it was “somewhat” to “very easy” to contact their healthcare team with questions or concerns, and 76% believed that their team takes enough time to address concerns.

Poorer AE communication quality was associated with less confidence in coping with AEs (p < 0.001), led more patients to hold back from disclosing AEs (p < 0.001), and resulted in patients wanting more help managing long-term AEs and symptoms (p < 0.001). Greater symptom burden was associated with poorer AE communication quality in bivariate analysis (p < 0.001), but this was only a trend in the multivariate model (p = 0.1).

“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 healthcare team conversations and access to palliative and other supportive care services,” the researchers concluded.