Survey Highlights Need for Improved Patient–Provider Communication and Symptom Management

Patients with chronic myeloid leukemia (CML) may be living longer thanks to improved therapies, but the results of a new study suggest that they are burdened by ongoing symptoms and treatment side effects. According to data presented at ASH 2017, fatigue, muscle aches, sleep disturbance, and memory loss were reported by 70%, 57%, 46%, and 42% of patients, respectively.

“People with CML experience significant symptom burden, and want more support with managing symptoms and side effects,” said Alexandra K. Zaleta, PhD, Senior Director of Research, Cancer Support Community, Philadelphia, PA. “These findings highlight the need for comprehensive CML symptom management during survivorship care, which may include integrated palliative and supportive care resources,” she added.

Although long-term survival for patients with CML has increased, patients are still challenged by disease complications, treatment adverse effects, and lifelong drug therapy. CML symptoms and treatment side effects are often chronic, and patients may need care from a multidisciplinary team of specialists, said Dr Zaleta.

To examine symptom burden, palliative care needs, and experiences with healthcare team communication among patients, Dr Zaleta and her colleagues at the Cancer Support Community surveyed 310 patients with CML about their history, treatment, and symptoms.

Participants rated the extent to which 19 symptoms and treatment side effects interfered with daily life. The ratings (0 = not at all; 4 = very much) were then compiled into a symptom burden score.

Participants also rated 10 items to assess the quality of patient–provider communication about side effects (0 = strongly disagree; 4 = strongly agree). These items were also aggregated into a communication quality total score.

Poor Communication Linked to Greater Symptom Burden

Symptoms causing the greatest hindrance to daily life (>10%) included 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 or depression (32%), nausea (31%), water retention around the eyes (31%), appetite change (29%), constipation (27%), hand or foot swelling (22%), infection (15%), and sores not healing (12%).

Although 78% of respondents indicated that their healthcare team prepared them to manage their treatment side effects, more than 50% of patients reported that they wanted more help managing short-term (51%) and long-term (59%) treatment side effects.

In addition, although 81% of patients reported being satisfied with the communication about their CML treatment, only 65% were satisfied with the communication about the treatment of their side effects. In addition, 19% of patients revealed that they did not report the full extent of their symptoms and side effects to their provider.

A regression analysis showed that patients who reported less satisfaction with their healthcare team communication about side effects also reported greater symptom burden, less confidence in coping with their treatment side effects, and greater desire for support in managing symptoms.

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