The far-reaching impact PV can
have
Emotional strain/toll starts immediately—symptom burden is an ongoing challenge
Since PV is often an incidental diagnosis following routine blood work, emotional responses such as anxiety, shock, and anger are to be expected, especially when symptoms have not been identified as part of PV in the past.6,25,51,52
Despite lasting perceptions of minimal disease burden,
nearly 90% of patients reported experiencing symptoms at the time of their diagnosis.23,24
Patients may not realize that symptoms like fatigue, brain fog, or itching are connected to their PV,
so they may normalize them or attribute them to aging or stress.24,26
PV may seem manageable, but it remains a chronic cancer with persistent risk
Consistently maintaining a patient's HCT below the 45% threshold is an ongoing challenge, considering the fluctuations that come with PV and its symptoms.6
Nearly 80% of patients with MPNs, including PV, report emotional strain, including anxiety and stress related to symptom burden and disease uncertainty (N=117).54
The discrepancy between external appearance and internal experience often causes patients to feel misunderstood or unsupported by others.26
Many patients adjust to the diagnosis—but not the day-to-day symptoms they experience. Fatigue, anxiety, and the unpredictability of PV remain constant.26 Even with therapies to aid HCT control, the burden persists.6,53
Symptom burden in PV is more than discomfort—it’s associated with significantly reduced overall survival (P=0.002).4*†
Overall survival by mean symptom burden score per MPN-SAF TSS
†A multicenter, observational study comprising patients from 13 academic and community centers. Eligibility criteria was patients >18 years old, enrolled with a diagnosis of PV, ET or MF (primary or post-PV/ET) according to WHO and/or International Consensus criteria, and having completed at least one MPN-SAF TSS questionnaire between April 2013 and August 2022.4
PV symptoms can have an extensive and lasting toll on patients
62% of people with PV, even those with low-risk PV or less severe symptoms, report that their cancer symptoms reduced their quality of life, making them feel vulnerable and alone.23,25
PV often disrupts patients’ ability to engage in family activities, maintain social relationships, and manage daily responsibilities.23,56
Patients say the impact of PV isn’t confined to lab values23
- 63% Interfered with family and social life
- 52% Limited by pain and discomfort
- 48% Interfered with their daily activities
- 30% Needed to cancel plans
- 23% Needed to stay in bed all or most of the day
Percentage of patients that reported these symptoms (N=380)
The impact of PV on employment can lead to reduced independence and productivity, financial stress, increased emotional distress, or even loss of employment23,26,56
An increasing number of people with PV have had to make an employment change (N=248), including56:
- 27% left a job
- 22% went on disability leave
- 22% reduced work hours
Because patients may look healthy despite a serious underlying condition, they often struggle to validate their diagnosis—to others and to themselves26
Proactively acknowledging the psychological impact of diagnosis, offering early emotional support, and providing clarity on treatment expectations can improve trust, engagement, and long-term adherence.24,26,57,58
Use symptom tracking to help build bridges to improve communication
Symptoms tend to be reported differently by patients and healthcare providers, with physicians focusing most on clinical outcomes, and patients reporting symptoms that were more closely tied to their daily activities.59
Using validated tools, such as the MPN-SAF questionnaires, can help identify unspoken concerns, quantify disease burden more accurately, and guide responsive care.28,60
By engaging in holistic and meaningful conversations with patients, including shared decision making when applicable, physicians can lead the way for innovation in the PV landscape.
Learn more about commonly reported patient symptoms
ET=essential thrombocythemia; HCT=hematocrit; MF=myelofibrosis; MPN=myeloproliferative neoplasm; MPN-SAF=Myeloproliferative Neoplasm Symptom Assessment Form; PV=polycythemia vera; TSS=total symptom score; WHO=World Health Organization.
References
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