A structured nurse-led clinic will help sufferers with myeloproliferative neoplasms: © inventory.adobe.com.
Sufferers residing with myeloproliferative neoplasms expertise a variety of signs from each the illness and its remedies. In response to analysis, a nurse-led clinic that follows a structured strategy could assist observe these signs extra carefully and scale back the variations seen between what sufferers report and what clinicians report throughout symptom assessments.
A pilot research shared in an summary on the 2025 European Hematology Affiliation Congress reported outcomes of a pilot, nurse-led clinic to grasp the impression of myeloproliferative neoplasms. The clinic collected patient-reported outcomes tracked in a affected person diary and measured with questionnaires throughout nurse-led clinic visits. Affected person care satisfaction was measured on the finish of visits.
Notably, these information show {that a} nurse-led clinic may facilitate a system for sufferers to report their very own symptom burden, the place earlier findings have demonstrated discrepancies exist between patient- and physician-reported symptom evaluation.
What Signs Did Sufferers With Myeloproliferative Neoplasms Report?
Prior focus teams decided the patient-reported final result measures and patient-reported expertise measures assessed. Amongst these had been disease-specific signs, malnutrition threat, psychological well being, medicine adherence and high quality of life.
Fatigue was reported as probably the most debilitating symptom by 21 sufferers (70%) and was extra frequent in sufferers with polycythemia vera (4/5 sufferers) and myelofibrosis (6/7 sufferers). The imply severity of fatigue in these circumstances had been 5.4 out of 10 factors and 5 out of 10 factors, respectively.
On this group, fever was reported by 1 affected person and night time sweats by 3; 3 sufferers had been additionally deemed as being vulnerable to malnutrition, and sufferers had an optimum imply adherence of 24.6 out of 25. Imply scores of tension and despair, assessed with Generalized Anxiousness Dysfunction-7 and Affected person Well being Questionnaire-9, respectively, had been 1.9 factors and 4.6 factors.
Imply affected person satisfaction with the clinic was 9.2 out of 10.
The research enrolled 30 sufferers, together with 18 with important thrombocytopenia, 7 with myelofibrosis, and 5 with polycythemia vera. Sufferers had a imply age of 70.8 years (vary, 53 to 85), and 17 of them had been feminine.
How Did This Report Evaluate to Earlier Knowledge on Myeloproliferative Neoplasm Symptom Reporting?
Current findings that in contrast physician-reported symptom burden and patient-reported symptom burden for 3,979 sufferers with myeloproliferative neoplasms in Germany demonstrated that sufferers reported considerably greater symptom burden than did physicians.
Fatigue was reported in 82% to 85% of sufferers throughout myeloproliferative neoplasm diagnoses, though physicians reported fatigue in 26% to 36% of sufferers throughout diagnoses. Equally, pruritus was reported by 60% of sufferers with polycythemia vera and 27% of their physicians.
Sufferers had been requested to attain their signs from 0 (“absent/nearly as good as it may be”) to 10 (worst-imaginable/as dangerous as it may be), and the doctor’s evaluation was a sure or no query of symptom presence. Two assessments of symptom prevalence had been reported: one the place prevalence was outlined as a patient-reported rating from 1 to 10 and one the place prevalence was outlined as a patient-reported rating from 4 to 10.
When evaluating affected person and doctor reviews, the very best stage of settlement reached solely 30% when prevalence was outlined broadly (scores of 1 to 10) and 41% when prevalence was outlined extra narrowly (scores of 4 to 10).
Settlement was particularly poor for sure signs. For instance, there was no significant settlement for fever (5%), night time sweats (18%), weight reduction (20%) and ache (15%) when utilizing the 1 to 10 definition. With the stricter definition of 4 to 10, settlement remained very low for fever (11%) and ache (19%).
Nurses’ Position in Myeloproliferative Neoplasm Burden Evaluation
Though the nurse-led clinic was solely evaluated in a pilot research with 30 sufferers, the clinic’s intention to standardize symptom analysis aligns with findings that physicians and sufferers should not in settlement by way of symptom reporting. Moreover, the clinic was meant to determine at-risk sufferers in a well timed method with a view to join them with acceptable supportive care.
“Most sufferers may gain advantage from standardized symptom monitoring and devoted time for communication on symptom administration and coverings,” wrote authors of the research on the nurse-led clinic.
References
- “A Structured Nurse-led Clinic For Sufferers With Myeloproliferative Neoplasms: A Pilot Research,” by Daniela Berardinelli, et al. Introduced at: 2025 European Hematology Affiliation Congress; June 12-15, 2025; Milan, Italy.
- “Comparability of Recognition of Symptom Burden in MPN Between Affected person- and Doctor-Reported Evaluation – An Intraindividual Evaluation by the German Research Group For MPN (GSG-MPN),” by Kirsi Manz, et al. Leukemia. https://pmc.ncbi.nlm.nih.gov/articles/PMC11976279/
