Team Effort: Meeting the Complex Needs of Long-Term Multiple Myeloma Survivors


The UK Myeloma Forum and the British Society for Haematology collaborated to create a comprehensive, multidisciplinary guideline document for the screening, management, and long-term care of patients with myeloma.

John A. Snowden, MD

John A. Snowden, MD

John A. Snowden, MD

Life expectancy for patients with myeloma has increased significantly over the past 20 years. In England, the 5-year survival rate increased from 37.1% in 2005-2009 to 42.2% in 2007-2011.1 Data from the National Cancer Institute’s SEER program show steady improvement in 5-year relative survival in the United States, from 26.3% in 1975 to 52.7% in 2009.2

However, longer life expectancy comes with a unique set of problems. The physical health of long-term survivors reflects the effects of disease, comorbidities, frailty, and aging. Moreover, treatment often includes adverse events (AEs), such as permanent organ damage, as patients go through cycles of treatment, remission, and relapse.

To date, there is no comprehensive, multidisciplinary guideline document for the screening, management, and long-term care of myeloma patients. The UK Myeloma Forum and the British Society for Haematology set out to address the need and published such a guideline in a recent issue of the British Journal of Haematology.

In an email interview with OncLive, John A. Snowden, MD, director of Blood & Marrow Transplantation, and Diana Greenfield PhD, RN, professor of Cancer Survivorship, both at Sheffield Teaching Hospitals NHS Foundation Trust & University of Sheffield, said the goal is to even change the language used to discuss myeloma treatment. They prefer to discuss “management,” rather than “treatment.”

“Thankfully, myeloma is now for many patients becoming a chronic disease—it needs to be managed with comprehensive care just like other chronic but incurable diseases, such as diabetes,” they said. “Proactivity rather than reactivity is key, as these problems will often present eventually and some healthcare worker eventually has to address them. It's better all round to deal with them early and within the myeloma team, particularly as myeloma is a relatively rare type of cancer, with an increasing prognosis, but with a unique range of problems with which other healthcare workers, such as general practitioners, may be unfamiliar.”

The guidelines offer recommendations for screening and management for not just oncologists, but also for general practitioners and healthcare specialists in other disciplines, including dentistry and psychology; nurses; social workers; and community groups. All told, as many as 25 practitioners and groups could be involved in managing the late-effects of myeloma.

“Our hypothesis is that it will be cost-effective given that nurse and therapy-led services are significantly less expensive and more comprehensive than medically-led care and will lead to a reduction in unplanned/unscheduled appointments with expensive specialists, primary care physicians, and [emergency department] visits,” Snowden and Greenfield said. “It also relies on navigating to existing generic community health and social care services as well as philanthropic agencies.

“We would like to test our model formally in a research setting and would challenge others to do the same in other health services. What we know is the current medical model, with the focus on the treatment-focused end of the care pathway, remains associated with significant unmet needs of myeloma patients and a change in culture and models of care is warranted if we want to optimize patient outcomes at all stages in myeloma.”

The guidelines discuss managing the physical effects of myeloma, recommending annual vaccines for influenza and regular screening for complications such as cardiovascular disease and endocrine disorders. The researchers also recommend regular dental screening to address concerns such as dry mouth, hypersensitivity, and problems with speaking or swallowing.

“Maintenance of oral and dental hygiene is relevant to all myeloma patients, whether or not they have undergone [hematopoietic stem cell transplantation],” the researchers wrote. “Regular dental review will not only help identify the risk of bisphosphonate-related osteonecrosis of the jaw, but should also cover a broader range of issues.”

The guidelines go beyond physical concerns, calling for regular assessment of a patient’s mood, anxiety, and cognitive status. The researchers recommend a 4-level model of psychological assessment and support in-line with recommendations by the National Institute for Health and Care Excellence. Snowden and Greenfield said that healthcare providers can overlook certain aspects of long-term management, but that the patient’s emotional and psychological wellbeing is as important as his or her physical health.

As expected, there is a lot of screening, monitoring, and testing built into these guidelines. But, as Snowden and Greenfield point out, physicians are tasked with managing a complex, lifelong condition that can affect every aspect of a patient’s life, from sexual function to his or her ability to earn a living to general happiness.

“If you frame it as a hassle then it will be. If you frame it as addressing and managing the concerns of the patient and anticipating and monitoring of treatment consequences, rather than focusing purely on control of the clinical and laboratory parameters of disease activity, the patient’s needs will be addressed and late effects are identified sooner,” they said.

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