Patients with Myeloma Satisfied with Their Care but Feel Unprepared to Discuss Treatment Choices

Value-Based Care in Myeloma - Multiple Myeloma
Caroline Helwick

Although the majority of patients with multiple myeloma report being involved in making decisions pertaining to their care, approximately 50% of them also believe they lack sufficient knowledge about their disease to be fully conversant with their physicians. These findings come from a new online survey conducted by the Cancer Support Community in association with the Leukemia & Lymphoma Society, using the Cancer Experience Registry to gather the responses. The survey results were presented at the 2014 American Society of Hematology meeting.

“Efforts are needed to address gaps in the delivery of treatment decision preparedness support to multiple myeloma patients,” said Joanne S. Buzaglo, PhD, Senior Vice President of Research and Training at the Cancer Support Community, Washington, DC, which conducted the study.

According to Dr Buzaglo, more than 24,000 new patients with myeloma are estimated to be diagnosed annually. With advances in treatment, these patients are living longer than ever, “but they are often confronted with complex treatment decisions,” she said. “Many patients are not fully prepared to discuss their treatment options with healthcare providers.”

From July 2013 to July 2014, the Cancer Support Community registered 495 patients with myeloma, 78% of whom responded to the questionnaire. The present analysis involved 280 US-based registrants: the patients’ median age was 64 years; 54% were female, 87% were white, and 56% had at least a college degree. The median time since diagnosis was 4.5 years.

The goal of the study was to learn about the experience of patients with myeloma regarding treatment decision-making, and to use the results to raise awareness.

Information Provided, but Patients Still Feel Unprepared

Before making a decision about treatment, 94% of the patients received information about their diagnosis, 80% received information about their treatment options, and 52% heard about clinical trials.

However, 33% of patients reported they had no knowledge, or only a little knowledge, about treatment options before making a decision. Only 45% of this fairly well-educated cohort said they had “quite a bit” or “very much” knowledge.

When asked “How involved were you in your treatment decision-making process,” 66% of the patients answered “quite a bit” or “very much.” Overall, 16% of the patients felt they were not at all involved in the decision-making process or they were only involved “a little bit.”

An important finding was that 39% of patients said they were completely unprepared to discuss treatments with their physician; only 40% of patients said they were prepared.

“Patients who wrote down a list of questions prior to their first visit to discuss treatment options with their healthcare provider felt significantly more prepared to discuss their options,” Dr Buzaglo suggested.

Additional patient responses to the survey were:

  • 64% of patients reported that a member of their healthcare team spoke to them about clinical trials
  • 40% received treatment decision support before the initiation of therapy
  • 36% would have liked more treatment information/support
  • 29% participated in a clinical trial
  • 25% did not feel they had a treatment choice
  • 20% reported not having enough time to make a treatment decision.

Patient Satisfaction and Empowerment

Regardless of feeling unprepared, the majority of the patients reported being satisfied with their care overall. The survey showed that 82% of patients were satisfied with the outcome of their treatment, 74% were satisfied with their physician’s explanation of the benefits of each treatment option, 71% were satisfied with how they arrived at a decision, 68% were satisfied with their magnitude of participation in the treatment decision, and 67% were happy with their physician’s explanation of the risks and side effects of each option.

“We also found that 66% of patients received a second opinion about medical treatment,” Dr Buzaglo added. “Those who got a second opinion were slightly more satisfied with how they arrived at their treatment decision, but not getting a second opinion did not affect patients’ satisfaction with treatment outcomes.”

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Last modified: May 20, 2015
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