A better understanding of the mental health of patients with myelodysplastic syndromes (MDS) and their caregivers is warranted, as research highlights that caregivers experience mental health issues similar to patients themselves and could benefit from intervention and outreach from health care professionals during the care journey. These findings were presented at the 49^th Annual Oncology Nursing Society (ONS) Congress by Isabel Scheurmeyer, MD, VA Northeast Ohio Healthcare System, Cleveland.

It has been noted that patients with MDS have significantly worse health-related quality of life (HRQoL) than the general population, though little is known about how caring for patients with MDS impacts the health and wellbeing of caregivers.

Patients were recruited from the patient database and social media outreach groups of the Aplastic Anemia and MDS International Foundation (AAMDSIF) and social media groups of other MDS-affiliated patients. Three validated surveys of self-reported outcomes were completed by patients and their caregivers between May 5 and October 6, 2021. Surveys consisted of the PH-4, the FACT-An, and the Caregivers Self-Assessment Questionnaire.

Among the 158 complete responses received, results demonstrated that 36% of patients and caregivers had moderate or severe scores on the PHQ-4, which indicated high levels of depression and/or anxiety. Functional impairment, high risk MDS, and transfusion dependency were associated with worse mental health as measured by elevated PHQ-4 scores. By contrast, positive support networks and lack of financial concerns positively impacted mental health. Furthermore, the burden of MDS was reported to be even more severe by caregivers than patients. It was noted that caregivers reported a larger impact of MDS on their lives than patients. Most caregivers (60%) reported a high degree of distress as per the Caregiver Self-Assessment Questionnaire.

“This study identifies certain subgroups that have higher risk for mental health issues, allowing HCPs to focus on those MDS patients with support and educational interventions,” concluded Dr Scheurmeyer and colleagues.

Source: 

Scheurmeyer I, Hughes M, Sloan E, et al. The impact of myelodysplastic syndromes (MDS) on the mental health of patients and caregivers. Presented at the Oncology Nursing Society Congress, Washington, D.C. April 24-28, 2024.