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

Background

Myeloproliferative neoplasms (MPNs), a group of rare hematologic malignancies comprised of myelofibrosis, polycythemia vera and essential thrombocythemia, significantly impact the lives of patients with historically few effective treatment options. In this quality improvement (QI) initiative we assessed barriers to patient-centered MPN care in 2 large U.S. hospital systems.

Methods

Between 3/2021 and 5/2021, 24 hematology/oncology healthcare professionals (HCPs) from 2 large hospital systems completed surveys designed to characterize self-reported practice patterns, challenges, and barriers to collaborative MPN care. Additionally, 26 Black patients and 25 non-Black patients with MPNs completed surveys regarding their goals for treatment, barriers to care, and communication with providers. Findings from all surveys paired with patient chart data was presented to 18 HCPs from the systems in AF sessions to reflect on their own practice patterns and prioritize areas for improvement in MPN care. Participants developed team-based action plans to overcome identified challenges, including barriers in risk stratification, care coordination, and shared decision-making (SDM) for patients with MPNs. Surveys conducted before and after the small-group AF sessions evaluated changes in participants' knowledge and confidence in delivering collaborative, patient-centered MPN care.

Results

Team-Based Surveys: HCPs identified difficulty managing their symptoms (35%) and difficulty choosing therapy that best meets their treatment preferences and goals (25%) as the most pressing challenges their patient's face in their MPN care. The most challenging issue encountered by HCPs in selecting therapies for patients with MPNs is identifying when patients are undergoing disease progression/transformation (48%). HCPs reported effects on quality of life (75%) and treatment effectiveness (65%) as the most important factors for treatment decision-making among patients with MPNs. Teams were underutilizing SDM to provide patient-centered care, citing not enough time to engage in SDM (55%) and patients' low health literacy (50%) as the largest barriers.

Patient Surveys: In contrast to HCP responses, the biggest challenge faced in their MPN care reported by Black patients was lack of reliable transportation or long distance to and from my care center (46%) difficulty managing my symptoms (36%) for non-Black patients. Furthermore, Black patients with MPN identified cost of treatment (56%) and advice from loved ones (40%) as the top factors for treatment decision-making, whereas, non-Black patients cited how the treatment is taken (52%) and how well the treatment will control my symptoms (50%). All patients identified they wish they had more time to discuss goals and preferences for treatment (62% Black, 64% non-Black ) with their provider. Black patients reported their MPN care team could improve most in education about MPNs and treatment options (73%), while non-Black patients felt improvements in empathy throughout the emotional journey of managing my MPN (68%) would be most beneficial.

Small-Group AF Sessions: Across the 2 oncology centers, teams participating in the AF sessions (Table 1) shared a self-reported caseload of 219 patients with MPNs per month. HCPs reported meaningful shifts in confidence in their ability to provide optimal, patient-centered care (Figure 1) and knowledge of treatment options for MPNs (Figure 2). The aspects of patient-centered care HCPs will routinely discuss in more detail with patients are patients' goal and preferences (81%), results of genetic testing (63%), and risks and benefits of treatment options (56%). To achieve these goals, 63% of HCPs committed to improve team skills in appropriate risk stratification and differentiation of therapy based on patient-centered factors followed by sharing action plans with additional clinical team members (56%).

Conclusions

Participation in this QI initiative resulted in increased confidence in hematology/oncology HCPs ability to deliver patient-centered MPN care and improve commitment to team-based collaboration. Remaining practice gaps and challenges can inform future QI programs.

Study Sponsor Statement

The study reported in this abstract was funded by an independent educational grant from Incyte Corporation. The grantors had no role in the study design, execution, analysis, or reporting.

Figure 1

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Figure 1

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