Quality Improvement Program Identifies Disparities and Opportunities to Improve Delivery of Patient-Centered Care in Patients with Myeloproliferative Neoplasms

Primary myelofibrosis (MF) is an aggressive form of bone neoplasm. In patients with essential thrombocytopenia and polycythemia vera, secondary myelofibrosis (post-essential thrombocytopenia) and post-polycythemia vera may occur due to natural disease progression. These cancers are uncommon hematologic malignancies known as myeloproliferative neoplasms (MPNs). Patients with MPNs have diverse symptoms and poor responses to the few available treatment options, which suggests treatment regimens may better serve patients if they were individualized. In this phase 2 quality improvement initiative, investigators sought to identify barriers to personalized care for patients with MPNs.

In this study, patients with MPNs (black = 26, non-black = 25) responded to surveys that assessed their treatment goals, perceived barriers to care, and communication with providers. Team-based healthcare providers from 2 oncology centers (n = 24: 12% oncologists, 25% nurse practitioners/physician assistants, 63% nurses) also completed surveys that evaluated their self-reported practice patterns, challenges, and barriers to collaborative care for patients. Patient chart data, patient survey data, and provider survey data were presented to 18 healthcare professionals (22% oncologists, 33% nurse practitioners/physician assistants, 22% nurses, 23% patient navigators) during audit-and-feedback (AF) sessions. These small group sessions were intended to encourage participants to self-evaluate their performance based on the survey and practice data presented to develop more team-oriented action plans for patient care. Post-AF session surveys were conducted to assess changes in patient and provider responses.

Survey data indicate there were differences in responses between black and non-black patients regarding their MPN care. With respect to communication, all patients (62% black, 64% non-black) indicated the need for more time to talk about their treatment goals with their provider. The greatest areas for improving communication for black patients were increasing patient education about MPNs and treatment options (73%), while non-black patients suggested care teams be more empathetic (68%). However, black and non-black patients differed in their decision-making approaches. For black patients, cost of treatment (56%) and advice from family and friends (40%) were identified as primary factors that influence their treatment decisions. Non-black patients stated mode of treatment delivery (52%) and effectiveness of the treatment in controlling symptoms (50%) were most important. Black patients indicated their biggest barrier to care was primarily related to transportation and distance required to travel to and from the center (46%), and for non-black patients the biggest barrier to care was managing symptoms (36%).

Unlike patients, providers considered the biggest challenges for their patients to be managing their symptoms (35%) and selecting a therapy that aligns with patient treatment goals (25%). Providers indicated their most challenging issue in selecting therapies for patients is determining if the disease course is progressing or transforming (48%). Providers indicated quality of life (75%) and efficacy of the selected therapy (65%) are the most important factors for patients when making treatment decisions. The greatest barriers to shared decision-making identified by providers were needing more time to have decision-making conversations with patients (55%) and low health literacy among patients (50%).

Following the AF sessions, participating providers reported sharing a caseload of 219 patients with MPNs each month, greater confidence in their ability to provide patient-centered care, and improved knowledge of treatment options for MPNs. Providers indicated they will be more intentional about shared decision-making with their patients, including discussing goals and preferences (81%), genetic testing results (63%), and risks and benefits of treatment options (56%). Healthcare providers committed to change their approach to improve collaborative efforts in risk stratification and differentiation of therapy determined by individual patient data (63%). Providers also committed to sharing action plans with care team members (56%).

The program revealed discrepancies between provider practice and patient perspectives in MPN care. The quality improvement program increased provider confidence and collaboration to provide more patient-centered care for patients with MPNs and may serve as a model for other MPN practice gaps. 

Source

• Verstovsek S, Mesa RA, Sullivan S, et al Advancing personalized care for patients with myeloproliferative neoplasms (MPNs): findings from a phase 2 scale-up quality initiative across two large U.S. oncology systems. American Society of Hematology Annual Meeting and Exposition; December 11-14, 2021. Abstract 1911.