Quality of Life and Productivity Impact of Myelodysplastic Syndromes (MDS): The Patient Perspective

One of the most important clinical features of myelodysplastic syndromes (MDS) is the presence of chronic anemia which is directly related to fatigue. Patients' experiences of fatigue associated with chronic anemia are well-documented in the literature; however, consensus on measurement of fatigue is lacking. To understand the effect that fatigue has on the health-related quality of life (HRQL) of MDS patients, and the economic burden of the disease, a qualitative interview study was completed.

Following a targeted review of the existing literature, 60-minute face-to-face in-depth qualitative interviews were conducted with MDS patients (n=17) in the US. All patients interviewed had a documented diagnosis of MDS according to the World Health Organization (WHO) 2008 classification. Interviewer questions were open-ended and focused on patients' HRQL and indirect costs associated with the disease. The 12-item Short-Form Health Survey (SF-12v2^®) was administered after the interview to gain further insight into the impact on patients' HRQL. Qualitative data was analyzed using a grounded theory approach that combined semi-quantitative and qualitative methods.

The mean age of patients interviewed was 70.8 years; 59% of patients were male. The sample included patients of each WHO 2008 classification; the most common diagnosis was refractory cytopenia with multilineage dysplasia (47%). Based on the International Prognostic Scoring System (IPSS), 59% and 41% of patients were diagnosed with low and high risk MDS, respectively, with 76% of patients currently taking treatment for their MDS. Current treatments included erythroid growth factor support (53%; not approved for MDS in the US), hypomethylating agents (18%), and lenalidomide (6%). One patient reported transfusion-dependence (≥2 transactions in the past eight weeks) – however the number of patients receiving occasional transfusions was not recoded. This qualitative study found that MDS is associated with a considerable financial impact to patients. Based on the qualitative interviews with patients, the indirect financial costs reported (i.e., decreased work activities) were equally as burdensome to patients as their direct medical cost for treatment. Seven patients (41%) discussed the impact of MDS on their ability to work, either as a result of fatigue or their constant need for treatment. Patients reported being unable to complete work activities, taking time out of work for medical appointments, and reduced productivity during working hours. Patients also reported financial impacts associated with travel to medical appointments (n=11, 65%), and caregiver assistance with daily activities that patients had difficulty completing as a result of their disease (n=5, 29%). A total of 30 HRQL concepts within 11 domains (Table 1) were spontaneously reported by patients during the interviews, with the largest HRQL impairment being physical activity (n=16, 94%) directly related to patients' fatigue. These results are consistent with findings from the SF-12v2^® questionnaire, on which patients scored a mean Physical Functioning domain score of 37.5 (SD 30.28) on a scale from 0–100 where a higher score indicates a better health status. MDS patients also frequently reported the social (n=12, 71%), sleep (n=11, 65%), functional (n=10, 59%), and emotional (n=9, 53%) impacts of the disease.

These qualitative findings provide additional insight on the HRQL and financial impact of MDS which has been considered yet not fully articulated in the literature for these patients. Specifically, in addition to decline in HRQL, fatigue and the constant need for treatment in MDS appear to impact patients' work activities as well as their productivity within society.

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