The Association of Cancer Care Centers (ACCC) has concluded a significant three-year quality improvement initiative aimed at advancing care standards for patients with myeloproliferative neoplasms (MPNs), rare blood cancers that present unique diagnostic and treatment challenges.
Understanding MPNs and Current Challenges
MPNs, reclassified as cancers in 2008 by the World Health Organization, encompass three main types: polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). Approximately 20,000 Americans live with these conditions, facing symptoms ranging from fatigue and night sweats to depression and difficulty concentrating.
The disease burden is significant, with many patients experiencing delayed diagnoses due to symptom overlap with other conditions. A 2016 survey revealed that physicians often overestimate patients' ability to recognize MPN-related symptoms, highlighting the need for improved patient education and symptom management strategies.
Quality Improvement Program Implementation
The ACCC program, supported by Incyte, worked with three major institutions through 2024:
- Perlmutter Cancer Center at NYU Langone Hospital
- Kent Hospital in Rhode Island
- Charleston Area Medical Center Vandalia Health
Perlmutter Cancer Center's Success Story
At Perlmutter Cancer Center, which manages approximately 66 MPN patients annually, the quality improvement initiative yielded several significant advances:
Enhanced Patient Care Protocols
- Implementation of validated MPN Patient Reported Outcomes tools at each visit
- Increased clinic time, reducing wait times between referral and first visit
- Establishment of regular multidisciplinary case review meetings
Clinical Trial Integration
The center improved clinical trial access by:
- Enhancing physician awareness of recruitment criteria
- Including trial discussions in initial treatment planning
- Expanding access to community-based research networks
Financial Support and Education
Recognizing that 40% of MPN patients experience financial toxicity, Perlmutter implemented:
- New screening processes for financial hardship
- Programs to reduce financial burden
- Enhanced support systems for affected patients
Symptom Management and Quality of Life
Dr. Andrew Kuykendall from Moffitt Cancer Center, a program participant, emphasized the dual goals of extending life and improving quality of life. The initiative particularly focused on fatigue management, utilizing tools such as the Fatigue Severity Scale and MPN Symptom Assessment Form.
Practice Transformations
Key improvements at participating centers included:
- Strengthened care coordination among healthcare team members
- Expanded multidisciplinary education opportunities
- Enhanced protocols for diagnosis and quality-of-life assessment
- Improved patient symptom tracking and management systems
The ACCC's initiative represents a significant step forward in standardizing and improving MPN care across the United States, addressing both clinical and quality-of-life aspects of patient care.
