Impact of Chronic Disease and Its Burden on Aspects of Quality of Life in a Unique Sub-Population of Myeloproliferative Neoplasm Patients

Introduction: Myeloproliferative neoplasms (MPNs) are a group of chronic hematological malignancies consisting of polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). Regardless of sub-type, MPNs are associated with a chronic symptom burden and reduced overall quality of life (QoL). Symptom burden is related to disease state and progression; however, recently, QoL has been shown to be predictive of overall survival in MPNs. Therefore, garnering a more complete picture of symptom burden and QoL among MPN patients is important in better treating and managing this unique patient population. The purpose of this survey is to gather symptom- and QoL-related data from MPN patients recruited through a Facebook patient advocacy/support group page.

Methods: A survey was developed by the coordinator/administrator of the private MPN Spain Facebook groups, 'Essential Thrombocythemia and Polycythemia Vera and 'Primary, Secondary Myelofibrosis, in collaboration with an MPN Physician to assess symptom burden and the impact of the disease on various aspects of QoL. The survey opened to collect responses and was posted on the aforementioned Facebook group pages on June 18, 2022 and was closed for further responses on July 10, 2022. All survey responses were anonymous.

Results: A total of 178 MPN patients completed the survey (n=83 PV; n=68 ET; n=27 MF). Overall, the majority of respondents were between 40-59 years of age (n=126; 70.7%), were female (n=133; 74.7%), and had been diagnosed within the last three years (n=99; 55.6%). The most common symptom reported across all sub-types was fatigue (n=120; 67.4%) and the most common negative impacts of MPN was a psychological burden of the disease (n=91; 51.1%) and a detrimental impact on patients' abilities to perform activities of daily living (n=81; 45.5%). Of the 178 patients that took the survey, 84.2% (150) reported that their MPN negatively impacts their QoL and 24.1% (n=43) of patients have stopped engaging in social activities altogether due to the burden of their MPN. Regarding the types of support that patients desire the most, physician education/training on managing their MPN was the most commonly reported (n=151; 84.8%), followed by education from other patients via support groups (n=140; 78.6%), emotional support from others (n=123; 69.1%), and support (i.e., consideration, understanding) in the workplace environment (n=93; 52.2%). Finally, the majority (n=153; 85.9%) of patients that responded to this survey were working prior to their MPN diagnosis; however, nearly half (n=78; 43.8%) of those that reported working had to alter their job situation due to their MPN (e.g., stop working at full capacity or with limitation, accepted a job that was more compatible with illness, had to quit job, or lost their job). Table 1 describes select results of this survey by MPN sub-type.

Conclusions: The results of this survey describes common symptom- and QoL-related issues encountered by a younger than average and predominantly female group of MPN patients recruited entirely through Facebook advocacy/support groups. The findings of this survey should be interpreted with this in mind. Our results confirm that fatigue is the most common symptom these patients experience and that the chronic burden of the disease itself negatively impacts overall QoL. MPN patients' social life is greatly impacted and so is their working capacity with nearly half of those that reported working prior to their MPN diagnosis having some sort of job alteration post-diagnosis, ranging from working at a lesser capacity to losing their job altogether. It is clear that there are specific areas of focus that this group of MPN patients would like help with regarding disease management and overall QoL, including education from physicians and patients, general emotional support, and support in the workplace. MPN patients have long-term issues that need to be addressed that go beyond disease status and symptoms, with this unique group of patients demonstrating that these issues center around the impacts of their illness on general quality of life, social life, and work capacity and environment.

Mesa:AbbVie: Research Funding; Blueprint: Consultancy; Bristol Myers Squibb: Consultancy; Geron: Consultancy; Sierra Oncology: Consultancy, Research Funding; Celgene: Research Funding; CTI: Research Funding; AOP: Consultancy; LaJolla Pharmaceutical: Consultancy; Constellation Pharmaceuticals, Inc., a MorphoSys Company: Consultancy, Research Funding; Incyte: Consultancy, Research Funding; Promedior: Research Funding; Roche: Consultancy; Samus: Consultancy, Research Funding; Novartis: Consultancy; Genotech: Research Funding; Gilead: Research Funding; Imago: Research Funding.