A recent study found that patients with myeloproliferative neoplasms living in the United Kingdom, as well as their doctors, felt more burdened by the disease than other patients and providers in other parts of the world.
A recent study looked at quality of life issues faced by patients with myeloproliferative neoplasms (MPNs), including myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET), in the United Kingdom, and found significant impact not only on patients but also on their physicians, as compared with the rest of the world.
Researchers used a cross‐sectional survey of patients and treating physicians conducted in 2016 in Australia, Canada, Germany, Italy, Japan, and the United Kingdom.
Work productivity, absenteeism, presenteeism, and activity impairment were measured using the Work Productivity and Activity Impairment Index. Each domain was measured on a scale of 0% to 100%; a higher percentage indicated a more severe amount of impairment.
Surveys explored the physician—patient relationship, disease management/treatment attitudes, treatment and treatment goals, and the economic, emotional, and physical burden of the disease.
Overall, 286 patients (45 with MF, 78 with PV, and 163 with ET) and 31 physicians completed the survey in the UK. UK physicians reported a numerically higher number of patients under their care.
Data were stratified by overall symptom severity, calculated by combining the number of symptoms and their associated severity for each patient. This was used to place patients into quartiles (Q1, lowest symptom burden; Q4, highest symptom burden) at a global level.
UK patients were disproportionately represented in the higher symptom burden group. However, patients reported that “MPN symptoms reduce my life quality” regardless of their overall symptom burden, suggesting a significant impact on quality of life in the lower burden groups.
High emotional burden was noted with patients “frequently” experiencing anxiety, worry and frustration, and impact on family and social life. Impact on patients’ work productivity and activity impairment was high and demonstrated a greater societal burden of MPNs, with patients in the 2 highest quartiles associated with a higher burden across all areas.
The authors noted the possibility that financial burdens associated with work-related stress increase the emotional and symptom burden associated with MPNs, although that assumption needs additional research in order to confirm. They said that development of improved treatments and management strategies aimed at improving the symptom burden patients experience will assist in alleviating this burden.
For their part, UK physicians felt there was not enough time in appointments to address all symptoms, more so than physicians who were queried in other countries.
Strategies that could help both patients and physicians include telemedicine and remote symptom monitoring via mobile apps, the authors said.
Harrison C, Mathias J, Campbell‐Drew M, et al. UK results from the myeloproliferative neoplasms (MPN) landmark survey on the symptom, emotional and economic burden of MPN [published online March 10, 2019]. Br J Haematol. doi: 10.1111/bjh.15839.