Results of VOICE: a global survey of disease-specific knowledge and perspectives of real-world patients with CLL
Language English Country United States Media print
Document type Journal Article
PubMed
37722356
PubMed Central
PMC10679812
DOI
10.1182/bloodadvances.2023010879
PII: 497952
Knihovny.cz E-resources
- MeSH
- Leukemia, Lymphocytic, Chronic, B-Cell * therapy drug therapy MeSH
- Physicians * MeSH
- Humans MeSH
- Outpatients MeSH
- Duration of Therapy MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Geographicals
- Australia epidemiology MeSH
- United States MeSH
The Virtual Opinions poll Independent Centered on CLL patients' Experience (VOICE) evaluated patients' knowledge about chronic lymphocytic leukemia (CLL), their perspectives on diagnosis and treatment, and their unmet needs. Clinicians and patient advocacy group representatives developed and distributed the survey from March through December 2022 in 12 countries, and 377 patients with ≥1 line of previous CLL treatment responded from Europe, Latin America, the United States, Australia, Egypt, and Turkey. A majority of them (90%; 336/374) relied on their physicians for information regarding CLL and treatment. If at high risk, respondents prefer oral medications to intravenous (78%; 232/296), fixed duration treatment over treatment until progression (69%; 185/270), outpatient over inpatient treatments (91%; 257/283). Over three-fourths of respondents (78%; 286/368) wanted to be involved in treatment decisions, but a minority actually participated (44%; 138/313). COVID-19 vaccinations were widely available (97%; 273/281), but one-fifth (19%; 63/331) were unaware that CLL increases vulnerability to infections. Most patients' physicians explained their treatment options (84%; 297/355), and 90% (271/301) understood their treatment. Notably, >10% would continue treatment normally if they experienced cardiac problems or arrhythmias, whereas 23% would consider stopping treatment if they developed skin cancer. Treatment-associated side effects affected 27% to 43% of patients. These results in a global patient population highlight gaps in patients' knowledge of risk groups, their susceptibility to infections including COVID, and the side effects of common treatments. Such knowledge can guide the appropriate targeting of patient education initiatives by clinicians, advocates, and policymakers.
4th Department of Internal Medicine University Hospital Hradec Králové Hradec Králové Czech Republic
Asociación Leucemia Mieloide de Argentina Buenos Aires Argentina
Associaçäo Brasileira De Linfoma E Leucemia São Paulo Brazil
Department of Hematology Antalya Research and Training Hospital Antalya Turkey
Department of Hematology Fundacion para Combatir la Leucemia Buenos Aires Argentina
Department of Hematology Hospital Star Medica Lomas Verdes Mexico City Mexico
Department of Internal Medicine 3 University of Ulm Ulm Germany
Department of Malignant Hematology H Lee Moffitt Cancer Center and Research Institute Tampa FL
Health Services Leukaemia Foundation Brisbane Australia
Hematology Unit Department of Internal Medicine Cairo University Giza Egypt
Hospital Médico Policial Churruca Visca Buenos Aires Argentina
Hospital Nossa Senhora da Conceição Porto Alegre Brazil
Lymphoma Service Alfred Hospital and Monash University Melbourne Australia
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