P220 | QUALITY OF LIFE AND CARE ORGANIZATION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA IN THE LOMBARDY HEMATOLOGIC NETWORK: THE CML-OPERAP STUDY (OUTCOMES AND PERFORMANCES REPORTED AND ANALYZED BY PATIENTS)

Background Chronic Myeloid Leukemia (CML) accounts for 10-15% of adult leukemias, with an incidence of 1–2 cases per 100,000/year. Tyrosine kinase inhibitors have transformed CML into a chronic condition with survival rates nearing those of the general population. Most patients (pts) remain in chronic phase and are managed in outpatient settings. However, long-term therapy can affect quality of life (QoL), emotional well-being, and social functioning. The organizational model of the hematology center may influence patient QoL and treatment adherence. Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) offer insight into the pts experience and support improvements in care delivery. Aims The primary aim of the study is to assess the impact of the organizational models of hematology centers on the QoL of pts with CML. Secondary aims include: • Mapping and analyzing care models for CML across centers in the Lombardy Hematologic Network (REL) • Identifying strengths and weaknesses in different outpatient settings • Assessing the impact of CML and its treatment on daily life, symptoms, emotional well-being, and social functioning. Methods This is a 12-month, multicenter, cross-sectional, observational study involving 22 REL centers. Eligible pts are adults (≥18 years) with a confirmed diagnosis of CML, followed for ≥ 6 months in outpatient hematology clinics. Data collection includes: • Patient-reported questionnaires • Clinical data from medical records • Clinic organization data Questionnaires administered: 1. EORTC QLQ-C30: General QoL survey for cancer pts 2. EORTC QLQ-CML24: CML-specific QoL survey 3. CML Hematology Center Questionnaire: Custom 16-item tool evaluating pts perception of the treating center Centers will be grouped as: • Large centers (>100 CML pts): with/without dedicated clinic • Small centers (<100 CML pts): with/without dedicated time slots for CML pts Questionnaires are distributed during the visit and returned by mail using pre-stamped envelopes given at the visit. Study Status The study is ongoing; as of April 30th, 2025 about 40 pts were enrolled and 3 centers activated. The enrolment began on April 15th and aims to cover most of the ⁓2300 CML pts followed across the REL centers. Data on at least 1100 pts will be presented at the meeting. Conclusions This study will evaluate the QoL of CML pts within REL and the impact of hematology services organization on their QoL and care experience.

Publication Details

Journal
SHILAP Revista de lepidopterología
Published
2025-09-01
Primary Topic
Chronic Myeloid Leukemia Treatments
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article

P220 | QUALITY OF LIFE AND CARE ORGANIZATION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA IN THE LOMBARDY HEMATOLOGIC NETWORK: THE CML-OPERAP STUDY (OUTCOMES AND PERFORMANCES REPORTED AND ANALYZED BY PATIENTS)

SHILAP Revista de lepidopterología
Chronic Myeloid Leukemia Treatments
article

P220 | QUALITY OF LIFE AND CARE ORGANIZATION IN PATIENTS WITH CHRONIC MYELOID LEUKEMIA IN THE LOMBARDY HEMATOLOGIC NETWORK: THE CML-OPERAP STUDY (OUTCOMES AND PERFORMANCES REPORTED AND ANALYZED BY PATIENTS)

article en

Abstract

Background Chronic Myeloid Leukemia (CML) accounts for 10-15% of adult leukemias, with an incidence of 1–2 cases per 100,000/year. Tyrosine kinase inhibitors have transformed CML into a chronic condition with survival rates nearing those of the general population. Most patients (pts) remain in chronic phase and are managed in outpatient settings. However, long-term therapy can affect quality of life (QoL), emotional well-being, and social functioning. The organizational model of the hematology center may influence patient QoL and treatment adherence. Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) offer insight into the pts experience and support improvements in care delivery. Aims The primary aim of the study is to assess the impact of the organizational models of hematology centers on the QoL of pts with CML. Secondary aims include: • Mapping and analyzing care models for CML across centers in the Lombardy Hematologic Network (REL) • Identifying strengths and weaknesses in different outpatient settings • Assessing the impact of CML and its treatment on daily life, symptoms, emotional well-being, and social functioning. Methods This is a 12-month, multicenter, cross-sectional, observational study involving 22 REL centers. Eligible pts are adults (≥18 years) with a confirmed diagnosis of CML, followed for ≥ 6 months in outpatient hematology clinics. Data collection includes: • Patient-reported questionnaires • Clinical data from medical records • Clinic organization data Questionnaires administered: 1. EORTC QLQ-C30: General QoL survey for cancer pts 2. EORTC QLQ-CML24: CML-specific QoL survey 3. CML Hematology Center Questionnaire: Custom 16-item tool evaluating pts perception of the treating center Centers will be grouped as: • Large centers (>100 CML pts): with/without dedicated clinic • Small centers (<100 CML pts): with/without dedicated time slots for CML pts Questionnaires are distributed during the visit and returned by mail using pre-stamped envelopes given at the visit. Study Status The study is ongoing; as of April 30th, 2025 about 40 pts were enrolled and 3 centers activated. The enrolment began on April 15th and aims to cover most of the ⁓2300 CML pts followed across the REL centers. Data on at least 1100 pts will be presented at the meeting. Conclusions This study will evaluate the QoL of CML pts within REL and the impact of hematology services organization on their QoL and care experience.

SHILAP Revista de lepidopterología
Openalex Percentile: Top 32%
Chronic Myeloid Leukemia Treatments
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