Chakrabarti Prantar, Bhave Abhay, Harrison Claire, Seth Tulika, Mathews Vikram, Shetty Disha
Zoho Corporation, Consultant Haematologist, Chennai, India.
Empire Centre Haematology & Onocology Speciality Clinic, Mumbai, India.
BMC Cancer. 2025 Jul 1;25(1):1097. doi: 10.1186/s12885-025-14324-4.
Myelofibrosis (MF), leads to variety of symptoms, significantly impacting patients’ quality of life (QoL) and work productivity. Limited data exists on MF in India. This survey conducted among Indian physicians and their patients with MF evaluated patient journey, understand perceptions around symptom burden, its impact on QoL, and management.
This cross-sectional and multicentric survey between October to November 2021 across 17 cities was conducted using a structured questionnaire based on certain identified themes (symptom burden, QoL parameters, treatment goals and patient communication) during one-on-one telephonic interview. Descriptive statistics were used for data analysis.
Fifty physicians and 154 patients (primary MF: 51, post-PV: 78, post-ET: 25) participated. Diagnostic delay of 10 months from symptom onset was noted. 151 (98%) patients reported reduced QoL and loss of work productivity. Majority of the patients (56%) reported a negative impact on work productivity, with 76% confirming that MF hindered their work-related daily activities and 42% having reduced work hours. Key symptoms included abdominal pain (patients: 81%, physicians: 70%), fatigue (77% vs. 73%), and fever (54% vs. 48%). Patient-physician perception discrepancies on QoL factors were notable, particularly bone pain (12% vs. 64%), sleep difficulties (8% vs. 70%), sexual problems (2% vs. 78%), depression (4% vs. 63%), and inactivity (4% vs. 66%).
The study results highlight the negative impact of MF on work productivity by hampering their work-related daily activities and reducing the work hours. The findings underscore the significance of enhancing patient-physician communication and standardizing monitoring practices for improving care outcomes.
The online version contains supplementary material available at 10.1186/s12885-025-14324-4.
骨髓纤维化（MF）会引发多种症状，严重影响患者的生活质量（QoL）和工作效率。印度关于MF的资料有限。这项针对印度医生及其MF患者开展的调查评估了患者病程，了解了对症状负担、其对生活质量的影响以及管理的看法。
2021年10月至11月期间，在17个城市进行了这项横断面多中心调查，采用基于某些确定主题（症状负担、生活质量参数、治疗目标和患者沟通）的结构化问卷，通过一对一电话访谈进行。描述性统计用于数据分析。
50名医生和154名患者（原发性MF：51例，真性红细胞增多症后：78例，原发性血小板增多症后：25例）参与。从症状出现到诊断有10个月的延迟。151名（98%）患者报告生活质量下降和工作效率损失。大多数患者（56%）报告对工作效率有负面影响，76%的患者确认MF阻碍了他们与工作相关的日常活动，42%的患者工作时间减少。主要症状包括腹痛（患者：81%，医生：70%）、疲劳（77%对73%）和发热（54%对48%）。患者与医生在生活质量因素方面的认知差异显著，尤其是骨痛（12%对64%）、睡眠困难（8%对70%）、性问题（2%对78%）、抑郁（4%对63%）和活动减少（4%对66%）。
研究结果突出了MF通过阻碍与工作相关的日常活动和减少工作时间对工作效率产生的负面影响。研究结果强调了加强医患沟通和规范监测实践以改善护理结果的重要性。
在线版本包含可在10.1186/s12885-025-14324-4获取的补充材料。
