The Mental Health Burden and Quality of Life Impact of Myelodysplastic Syndromes in Patients and Their Caregivers

DiNardo, Katherine W; Houk, Alice; Shim, Christine; Backor, Kristen; Sloan, Erika; Sweere, Jolien; Schuermeyer, Isabel N; Hughes, Mary K.; LeBlanc, Thomas W.

doi:10.1182/blood-2022-155893

Cited by 4 publications

(5 citation statements)

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“…More effective treatments such as alloHSCT are available to few patients and present a significant treatment burden. A recently published study suggested that MDS has a significant impact on the QoL and mental health of patients with MDS and their caregivers [ 30 ]. Interestingly, the burden of MDS was found to be more severe for caregivers than for patients in some areas, such as planning and uncertainty about the future.…”

Section: Discussionmentioning

confidence: 99%

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Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

Frank,

Olshan,

Iraca

et al. 2023

Oncol Ther

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Introduction Patients with higher-risk myelodysplastic syndromes (MDS) face considerable challenges in disease management and often require caregiver support. Reports on the burden of caring for patients with advanced cancer suggest that caregivers receive insufficient support. Our research aimed to identify key challenges for caregivers of patients with higher-risk MDS. Methods Online bulletin board is a qualitative research methodology which enables data collection via a web-based platform. A mix of moderator-led discussion guide and interparticipant discussion provides the caregiver insights as online dialogue, which then undergo content analysis to extract key findings. Results Sixteen caregivers participated from the USA ( n = 5), UK ( n = 6) and Canada ( n = 5). Content analysis identified the caregiver experience in higher-risk MDS as multifactorial, with seven key categories of caregiver burden: caregiver role and burden, mental health, family dynamics, disease experience, treatment experience, healthcare professional (HCP) interactions and information and education. Conclusion There is significant impact and burden on caregivers of patients with higher-risk MDS, which varies depending on disease stage, choice (or lack of choice) of treatments, and the personal situation of the caregiver. Emotional stress occurs mostly at diagnosis/prognosis stage and when told to ‘watch and wait’, which is amplified when HCPs are perceived to lack knowledge/expertise about MDS. There is a need for better education about MDS for HCPs, patients, caregivers and the general community; a need for improved communication between patients/caregivers and HCPs; and a high unmet need for better mental health and emotional support for both patient and caregiver.

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Section: Discussionmentioning

confidence: 99%

“…Interestingly, the burden of MDS was found to be more severe for caregivers than for patients in some areas, such as planning and uncertainty about the future. The study also reported lower average emotional, social, and functional well-being among caregivers compared with patients, but higher physical well-being [ 30 ].…”

Section: Discussionmentioning

confidence: 99%

Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

Frank,

Olshan,

Iraca

et al. 2023

Oncol Ther

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“…Patients with high-risk disease, functional impairment, and transfusion dependence carry higher risks of anxiety and depression. Caregivers may suffer similar to worse mental health outcomes when compared to MDS patients [ 98 , 99 ].…”

Section: Myelodysplastic Syndromes and Myeloproliferative Neoplasmsmentioning

confidence: 99%

Advancing Palliative Care Integration in Hematology: Building Upon Existing Evidence

Robbins-Welty

Webb

Shalev

et al. 2023

Curr. Treat. Options in Oncol.

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Patients with hematologic malignancies and their families are among the most distressed of all those with cancer. Despite high palliative care-related needs, the integration of palliative care in hematology is underdeveloped. The evidence is clear that the way forward Current Treatment Options in Oncology includes standard-of-care PC integration into routine hematologic malignancy care to improve patient and caregiver outcomes. As the PC needs for patients with blood cancer vary significantly by disease, a disease-specific PC integration strategy is needed, allowing for serious illness care interventions to be individualized to the specific needs of each patient and situation.

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“…International societies also support the incorporation of health-related QOL assessment and PROs 90 . The routine assessment of PROs in clinical trials will better characterize the therapeutic impact on our patients and their caregivers, who report a poor QOL and mental health burden 91 . Financial toxicity is described in approximately 40% of patients 92 and is a significant source of distress for patients with MDS.…”

Section: Response Assessment For Hr-mdsmentioning

confidence: 99%

“…90 The routine assessment of PROs in clinical trials will better characterize the therapeutic impact on our patients and their caregivers, who report a poor QOL and mental health burden. 91 Financial toxicity is described in approximately 40% of patients 92 and is a significant source of distress for patients with MDS. Investigations into the role financial toxicity on QOL and mental health are essential given the high cost of novel therapies in the current era.…”

Section: Measurable Residual Diseasementioning

confidence: 99%

Evolution of Therapeutic Benefit Measurement Criteria in Myelodysplastic Syndromes/Neoplasms

et al. 2023

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Myelodysplastic syndromes/neoplasms (MDS) are heterogeneous, clonal myeloid neoplasms characterized by ineffective hematopoiesis, progressive cytopenias, and an increased risk of progression to acute myeloid leukemia. The diversity in disease severity, morphology, and genetic landscape challenges not only novel drug development but also therapeutic response assessment. The MDS International Working Group (IWG) response criteria were first published in the year 2000 focusing on measures of blast burden reduction and hematologic recovery. Despite revision of the IWG criteria in 2006, correlation between IWG-defined responses and patient-focused outcomes, including long-term benefits, remains limited and has potentially contributed to failures of several phase III clinical trials. Several IWG 2006 criteria also lacked clear definitions leading to problems in practical applications and interobserver and intraobserver consistency of response reporting. Although the 2018 revision addressed lower-risk MDS, the most recent update in 2023 redefined responses for higher-risk MDS and has set out to provide clear definitions to enhance consistency while focusing on clinically meaningful outcomes and patient-centered responses. In this review, we analyze the evolution of the MDS response criteria, limitations, and areas of improvement.

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The Mental Health Burden and Quality of Life Impact of Myelodysplastic Syndromes in Patients and Their Caregivers

Cited by 4 publications

References 0 publications

Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

Advancing Palliative Care Integration in Hematology: Building Upon Existing Evidence

Evolution of Therapeutic Benefit Measurement Criteria in Myelodysplastic Syndromes/Neoplasms

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