Nurse-Led Patient-Reported Outcome Assessment of Symptom Burden and Quality of Life in Myeloproliferative Neoplasms: An Observational Study.
Key claim: Across MPN subtypes, patients carry a substantial physical and psychosocial symptom burden—especially fatigue with frequent anxiety and depression—and structured nurse-led PROM visits help detect unmet needs and support engagement.
Abstract
AIM: To investigate the symptom burden associated with MPNs and its impact on patients’ psychophysical well-being and quality of life through a structured PROM-based nurse-led visit. DESIGN: Observational study. METHODS: We included MPN patients followed at the haematology outpatient clinic of a large university-affiliated hospital in Italy. Data were collected from September 2024 to March 2025 on 102 patients who underwent a structured PROM-based nurse-led visit supported by a dedicated symptom diary. RESULTS: Symptom burden was substantial (85% were symptomatic) across all disease subtypes, with fatigue emerging as the most prominent symptom, affecting 72% of patients and accompanied by marked psychological distress (42% and 44% with anxious and depressive symptoms, respectively). Overall health-related quality of life was predominantly moderate (mean score: 70.7 ± 21.3). Nearly all moderate-to-severe symptoms, including fatigue, inactivity, pain, itching, and abdominal discomfort, were strongly associated with impaired global health. 43% of patients need support in becoming more proactive in managing their disease, and satisfaction with the visit was very high (mean score 9.3 ± 1.3/10). CONCLUSION: The impact of MPNs was significant and multifaceted, affecting patients’ physical, emotional, and social well-being. Structured PROM-based nurse-led visits play a key role in detecting patients’ needs and supporting symptom management across all domains of well-being, fostering motivated engagement. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: Integrating structured PROM-based nurse-led visits into routine haematology care may improve symptom monitoring, support patient engagement, and guide timely and tailored supportive interventions. IMPACT: Patients with MPNs experience a substantial physical and psychosocial symptom burden. Symptom clusters are associated with anxiety, depression, and reduced quality of life. Structured PROM-based nurse-led visits may facilitate the early identification of unmet supportive care needs. REPORTING METHOD: Guidelines for reporting observational studies (STROBE): PATIENT CONTRIBUTION: Patients actively participated during the nurse-led visit and in data collection.
Why this matters
Across MPN subtypes, patients carry a substantial physical and psychosocial symptom burden—especially fatigue with frequent anxiety and depression—and structured nurse-led PROM visits help detect unmet needs and support engagement.