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

BACKGROUND

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.

METHODS

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.

RESULTS

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%).

CONCLUSION

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.

SUPPLEMENTARY INFORMATION

The online version contains supplementary material available at 10.1186/s12885-025-14324-4.