A New Patient-Centered World is Emerging in Hematology


According to a recent article in the ASH Clinical News patients are being encouraged to participate in shared decision-making (SDM) with their doctors, nurses and other medical personnel.

The practice is not yet fully implemented but studies have indicated that patient benefits include

  • Lower medical expenses
  • Better patient treatment adherence
  • Patients more satisfied with their treatment decisions

The role of a provider who participates in SDM is as a communicator and educator. The goal of SDM is to assist the patient in arriving at an optimum treatment decision. The term often used is that it is a patient-centered encounter.

Medicare and Medicaid Services

In 2015 both services initiated the requirement that patients must participate in an SDM program in order to be reimbursed for lung cancer screening. Failure to comply could mean that services may not be covered.

Then in 2018 Medicare revised its policy regarding implantable cardioverter-defibrillators. The primary function of this device is to prevent an episode of sudden heart failure. Medicare’s new policy requires patients to document their participation in an SDM program prior to having the device implanted.

About the Consent Form

The consent form ordinarily signed by hematology practitioners and their patients agreeing to intravenous therapy is one of the first steps in SDM. If the process were to be fully implemented, the patient and caregiver, if applicable, would be informed about possible side effects, oral medications, anticipated hospital stays, various co-pays, and other medical expenses.

Presenting Information in Visual Form

Various studies have been conducted regarding the SDM program in malignant and nonmalignant hematology. In one of the studies researchers found that communication was enhanced between patients and providers when the provider presented a visual interpretation of the drug’s performance in the body.

SDM and Clinical Trials

SDM has proven its usefulness in clinical trials. Researchers, conducting a study involving HIV/AIDS, analyzed the perceptions of patients towards participation in clinical trials. The majority listed “benefit to others” as the primary motive for trial participation.

Considering the low number of participants in many trials, the SDM program, in this case, brought results. Although the majority of participants in the HIV/AIDS trial came into the arena with minimal knowledge about procedures, almost all patients were brought up to speed through their medical provider.

About SDM and Blood Disorders

SDM discussions are appropriate for blood diseases such as multiple myeloma, lymphoma, and leukemia. These cancers carry similar burdens of toxicities, adverse events, and high treatment costs. SDM offers a one-stop plan versus receiving separate interpretations from various departments.

Researchers are highly supportive of multidisciplinary teams treating blood cancers. The teams consist of surgical technicians, nurses and nurses’ aids, attending physicians, anesthesiologists and other levels of staff.


Recently, a study was conducted that involved chronic lymphocytic leukemia (CLL) patients. The researchers analyzed how a multidisciplinary approach affected a patient’s attitude and knowledge of his or her disease.

The entire group, including the patients, participated in an educational intervention about CLL and SDM treatment approaches. After the intervention, there was an increase in the number of patients desiring SDM. There was also an increase in patient satisfaction concerning the information provided by their oncologists.

The CLL knowledge factor of the program after the intervention was impressive.

  • Lay navigators giving correct responses increased from 36% to 63%
  • Nurses and APPs (advanced practice providers) 35% to 69%
  • Physician’s knowledge of CLL remained high at 85% to 87%

Each Type of Leukemia Presents Its Own Obstacles

Acute myeloid leukemia presented certain issues that prevented the patient from choosing the best treatment plan. These issues included the perception that there were very few treatment options available. Patients were also worried about side effects and whether the AML treatments would have a serious effect on their quality of life.

Multiple myeloma patients can choose from several treatment options. With SDM the decision-making process is shared by using the multidisciplinary approach.

Future Consideration

Will SDM participation be required in the future (similar to lung cancer screening) in order to receive reimbursement for hematology services?

Help would be “right at your fingertips”. With a multidisciplinary team, for example

  • Pharmacists and APPs would take part in treatment discussions
  • Social workers would be immediately available for financial assistance, transportation and housing for caregivers
  • Nurses would be available to liaise between doctors and patients

The SDM Information for Ash Clinical News was provided by its Associate Editor Beth Faiman, CNP Ph.D.


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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