Nurse-Led Clinics Bridge Gaps in Myeloproliferative Care

A structured nurse-led clinic can help patients with myeloproliferative neoplasms: © stock.adobe.com.

Patients living with myeloproliferative neoplasms experience a wide range of symptoms from both the disease and its treatments. According to research, a nurse-led clinic that follows a structured approach may help track these symptoms more closely and reduce the differences seen between what patients report and what clinicians record during symptom assessments.

A pilot study shared in an abstract at the 2025 European Hematology Association Congress reported results of a pilot, nurse-led clinic to understand the impact of myeloproliferative neoplasms. The clinic collected patient-reported outcomes tracked in a patient diary and measured with questionnaires during nurse-led clinic visits. Patient care satisfaction was measured at the end of visits.

Notably, these data demonstrate that a nurse-led clinic could facilitate a system for patients to report their own symptom burden, where previous findings have demonstrated discrepancies exist between patient- and physician-reported symptom assessment.

What Symptoms Did Patients With Myeloproliferative Neoplasms Report?

Prior focus groups determined the patient-reported outcome measures and patient-reported experience measures assessed. Among these were disease-specific symptoms, malnutrition risk, mental health, medication adherence and quality of life.

Fatigue was reported as the most debilitating symptom by 21 patients (70%) and was more frequent in patients with polycythemia vera (4/5 patients) and myelofibrosis (6/7 patients). The mean severity of fatigue in those conditions were 5.4 out of 10 points and 5 out of 10 points, respectively.

In this group, fever was reported by 1 patient and night sweats by 3; 3 patients were also deemed as being at risk of malnutrition, and patients had an optimal mean adherence of 24.6 out of 25. Mean scores of anxiety and depression, assessed with Generalized Anxiety Disorder-7 and Patient Health Questionnaire-9, respectively, were 1.9 points and 4.6 points.

Mean patient satisfaction with the clinic was 9.2 out of 10.

The study enrolled 30 patients, including 18 with essential thrombocytopenia, 7 with myelofibrosis, and 5 with polycythemia vera. Patients had a mean age of 70.8 years (range, 53 to 85), and 17 of them were female.

How Did This Report Compare to Previous Data on Myeloproliferative Neoplasm Symptom Reporting?

Recent findings that compared physician-reported symptom burden and patient-reported symptom burden for 3,979 patients with myeloproliferative neoplasms in Germany demonstrated that patients reported significantly higher symptom burden than did physicians.

Fatigue was reported in 82% to 85% of patients across myeloproliferative neoplasm diagnoses, although physicians reported fatigue in 26% to 36% of patients across diagnoses. Similarly, pruritus was reported by 60% of patients with polycythemia vera and 27% of their physicians.

Patients were asked to score their symptoms from 0 (“absent/as good as it can be”) to 10 (worst-imaginable/as bad as it can be), and the physician’s assessment was a yes or no question of symptom presence. Two assessments of symptom prevalence were reported: one where prevalence was defined as a patient-reported score from 1 to 10 and one where prevalence was defined as a patient-reported score from 4 to 10.

When comparing patient and physician reports, the highest level of agreement reached only 30% when prevalence was defined broadly (scores of 1 to 10) and 41% when prevalence was defined more narrowly (scores of 4 to 10).

Agreement was especially poor for certain symptoms. For example, there was no meaningful agreement for fever (5%), night sweats (18%), weight loss (20%) and pain (15%) when using the 1 to 10 definition. With the stricter definition of 4 to 10, agreement remained very low for fever (11%) and pain (19%).

Nurses’ Role in Myeloproliferative Neoplasm Burden Assessment

Although the nurse-led clinic was only evaluated in a pilot study with 30 patients, the clinic’s aim to standardize symptom evaluation aligns with findings that physicians and patients are not in agreement in terms of symptom reporting. Additionally, the clinic was intended to identify at-risk patients in a timely manner in order to connect them with appropriate supportive care. 

“Most patients could benefit from standardized symptom monitoring and dedicated time for communication on symptom management and treatments,” wrote authors of the study on the nurse-led clinic.

References

1. “A Structured Nurse-led Clinic For Patients With Myeloproliferative Neoplasms: A Pilot Study,” by Daniela Berardinelli, et al. Presented at: 2025 European Hematology Association Congress; June 12-15, 2025; Milan, Italy.
2. “Comparison of Recognition of Symptom Burden in MPN Between Patient- and Physician-Reported Assessment - An Intraindividual Analysis by the German Study Group For MPN (GSG-MPN),” by Kirsi Manz, et al. Leukemia. https://pmc.ncbi.nlm.nih.gov/articles/PMC11976279/