MDS Has Significant Mental Health Impact on Patients, Caregivers

More than one-third of patients with myelodysplastic syndromes (MDS) and their caregivers had “concerning levels of depression and/or anxiety,” according to research presented at the 64th American Society of Hematology Annual Meeting and Exposition.

Katherine DiNardo, MD, of the Duke University School of Medicine, and colleagues conducted the research to address the “limited data about the effects of MDS on mental health, and on patients’ social and emotional well-being,” as well as the limited information about “how caring for patients with MDS impacts the well-being and health of caregivers themselves.”

Dr. DiNardo and colleagues administered the PHQ-4 survey, the FACT-An survey, and the Caregiver Self-Assessment (CSA) Questionnaire, with 133 patients and 25 caregivers completing the surveys. The mean time since diagnosis was five years, with 44% of patients receiving at least one disease-modifying therapy and around 25% self-reporting high-risk disease. Slightly more than half (52%) of patients were aged 60 years or older, with 48% of caregivers being aged 60 or older. Nearly all caregivers (84%) were female.

The study did not include patients with MDS who already received a bone marrow transplant or had an additional hematologic condition, nor caregivers who had a hematologic condition from the study.

More than one-third (36%) of patients and caregivers had moderate or severe scores on the PHQ-4, which indicate “concerning levels of depression and/or anxiety,” according to Dr. DiNardo and colleagues.

Several factors were significantly associated with worse mental health as measured by PHQ-4 scores, including functional impairment (P<.05), high-risk MDS (P<.05), and transfusion dependency (P<.001). However, “good support networks” had a significant positive impact on mental health (P<.001), as did “lack of financial concerns” (P<.001), according to the researchers.

However, “in certain instances, the burden of MDS was reported to be even more severe by caregivers than patients,” with caregivers reporting a “a larger impact of MDS on their lives than patients, particularly in regard to planning and uncertainty about the future,” Dr. DiNardo and colleagues wrote.

Most caregivers (60%) reported a “high degree of distress” on the CSA Questionnaire and reported lower average emotional, social, and functional well-being, but higher physical wellbeing, on the FACT survey, according to the study’s authors.

They also found that the COVID-19 pandemic led to moderate or significant worsening of mood in 30% of patients with MDS and 48% of caregivers, “especially in regard to worsening social isolation and inaccessibility of resources and travel,” Dr. DiNardo and colleagues wrote.

“MDS has a significant impact on the mental health of patients and their caregivers, and patients with high-risk disease, functional impairment, or transfusion dependence are at elevated risk for anxiety and depression,” Dr. DiNardo and colleagues concluded. “The mental health of caregivers also suffers in a manner similar to, and sometimes worse than, patients themselves, suggesting that caregivers could benefit from intervention and outreach from health care professionals as well. Further investigation is needed to identify the helpfulness of specific tools and interventions that may improve mental health and quality of life in this patient population.”

Reference

DiNardo KW, Houk A, Shim C et al. The mental health burden and quality of life impact of myelodysplastic syndromes in patients and their caregivers. Abstract #3626. Presented at the 64th ASH Annual Meeting and Exposition; December 10-13, 2022; New Orleans, Louisiana.