Patient journey mapping in polycythemia vera: an exploratory mixed-methods approach study to evaluate the quality of life in a cohort of Portuguese patients
Francesca Pierdomenico, Inês Costa, Nilza Gonçalves, João Malhadeiro, Daniel Brás, Ana Bagulho Lopes, Hugo Pedrosa, Lara Cunha, Manuel AbecasisAbstract
Background:
Polycythemia vera (PV) is a rare myeloproliferative neoplasm driven by JAK2 mutations.
Objectives:
The aim of this study was to map the patient journey and evaluate the impact of PV on patients' quality of life, disease awareness, and unmet needs related to PV management in Portugal.
Methods:
A mixed-methods approach was used comprising qualitative in-depth interviews and focus group discussions, followed by quantitative computer-assisted web interviews. Adults diagnosed with PV and receiving treatment in Portugal were eligible. The qualitative phase focused on developing a patient journey map, while the quantitative phase estimated the impact of PV on quality of life, disease awareness, and unmet needs using descriptive statistics.
Results:
Eight patients participated in the qualitative part (interviews: 5; focus group: 3), and 20 completed the computer-assisted web interviews. Patient journey map insights suggested PV's significant emotional, professional, social, and physical impact. Diagnostic delays were frequent, often due to nonspecific symptoms and limited provider awareness. Patients also reported pain during phlebotomy as a common concern. Quantitative findings revealed that a substantial proportion of patients experienced fatigue (70%), fear about the future (47%), routine disruptions (36%), social isolation (50%), and work-life imbalance (80%), with 36% to 80% perceiving these changes as highly impactful. In addition, 90% of patients reported being unaware of available support groups.
Conclusions:
This study provides exploratory insights into patient experiences and suggests a potential need for early diagnosis support programs and targeted patient education to improve quality of life. The findings need to be substantiated in a larger future study.