Nurse‐Led Patient‐Reported Outcome Assessment of Symptom Burden and Quality of Life in Myeloproliferative Neoplasms: An Observational Study
Source: PubMed Central Open Access, NCBI / U.S. National Library of Medicine
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. nop270784-sec-0001 Design Observational study. nop270784-sec-0002 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. nop270784-sec-0003 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). nop270784-sec-0004 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' need
Abstract
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. nop270784-sec-0001 Design Observational study. nop270784-sec-0002 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. nop270784-sec-0003 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). nop270784-sec-0004 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. nop270784-sec-0005 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. nop270784-sec-0006 Impact Patients with MPNs experience a substantial physical and psychosocial symptom burden. nop270784-li-0001 Symptom clusters are associated with anxiety, depression, and reduced quality of life. nop270784-li-0002 Structured PROM‐based nurse‐led visits may facilitate the early identification of unmet supportive care needs. nop270784-li-0003 bullet nop270784-list-0001 nop270784-sec-0007 Reporting Method Guidelines for reporting observational studies (STROBE): nop270784-sec-0008 Patient Contribution Patients actively participated during the nurse‐led visit and in data collection. nop270784-sec-0009