# Assessing myelofibrosis burden on QoL and productivity from healthcare personnel and patient perspectives in India

## TL;DR

This study explores how myelofibrosis affects the quality of life and work productivity of patients in India, highlighting communication gaps between patients and physicians.

## Contribution

The study provides new insights into the impact of myelofibrosis on work productivity and quality of life in the Indian context.

## Key findings

- Most patients reported reduced quality of life and work productivity due to myelofibrosis.
- Discrepancies exist between patient and physician perceptions of symptoms like bone pain and depression.
- Diagnostic delays and significant symptom burden were observed across patient subtypes.

## Abstract

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.