• This record comes from PubMed

Results of VOICE: a global survey of disease-specific knowledge and perspectives of real-world patients with CLL

. 2023 Nov 28 ; 7 (22) : 6819-6828.

Language English Country United States Media print

Document type Journal Article

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.

See more in PubMed

Stauder R, Eichhorst B, Hamaker ME, et al. Management of chronic lymphocytic leukemia (CLL) in the elderly: a position paper from an International Society of Geriatric Oncology (SIOG) task force. Ann Oncol. 2017;28(2):218–227. PubMed

Ou Y, Long Y, Ji L, et al. Trends in disease burden of chronic lymphocytic leukemia at the global, regional, and national levels from 1990 to 2019, and projections until 2030: a population-based epidemiologic study. Front Oncol. 2022;12 PubMed PMC

Yao Y, Lin X, Li F, Jin J, Wang H. The global burden and attributable risk factors of chronic lymphocytic leukemia in 204 countries and territories from 1990 to 2019: analysis based on the global burden of disease study 2019. Biomed Eng Online. 2022;21(1):4. PubMed PMC

Chen Q, Jain N, Ayer T, et al. Economic burden of chronic lymphocytic leukemia in the era of oral targeted therapies in the United States. J Clin Oncol. 2017;35(2):166–174. PubMed PMC

Seymour JF, Kipps TJ, Eichhorst B, et al. Venetoclax-rituximab in relapsed or refractory chronic lymphocytic leukemia. N Engl J Med. 2018;378(12):1107–1120. PubMed

Shanafelt TD, Wang XV, Kay NE, et al. Ibrutinib-rituximab or chemoimmunotherapy for chronic lymphocytic leukemia. N Engl J Med. 2019;381(5):432–443. PubMed PMC

Surveillance, epidemiology, and end results (SEER) program. SEER cancer stat facts: leukemia--chronic lymphocytic leukemia (CLL). National Cancer Institute. https://seer.cancer.gov/statfacts/html/clyl.html

Kabadi SM, Goyal RK, Nagar SP, Kaye JA, Davis KL. Treatment patterns, adverse events, and economic burden in a privately insured population of patients with chronic lymphocytic leukemia in the United States. Cancer Med. 2019;8(8):3803–3810. PubMed PMC

Jain N, Thompson P, Ferrajoli A, Nabhan C, Mato AR, O'Brien S. Approaches to chronic lymphocytic leukemia therapy in the era of new agents: the conundrum of many options. Am Soc Clin Oncol Educ Book. 2018;38:580–591. PubMed

Chesser AK, Keene Woods N, Smothers K, Rogers N. Health literacy and older adults: a systematic review. Gerontol Geriatr Med. 2016;2 PubMed PMC

Eek D, Blowfield M, Krogh C, Chung H, Eyre TA. Development of a conceptual model of chronic lymphocytic leukemia to better understand the patient experience. Patient. 2021;14(1):75–87. PubMed PMC

Bamigbola O, Warwick L. A comparative study of unmet information needs of patients with lymphoma and CLL: North America and Europe. J Clin Oncol. 2022;40(suppl 16)

Drupad H, Surve S. Patient perspectives of chronic lymphocytic leukemia & disease related outcomes--a qualitative study. HemaSphere. 2021;5(S2):716.

Koffman B, Dennison B, Kennard K, et al. The experiences of 1147 chronic lymphocytic leukemia (CLL) patients (pts) [abstract] J Clin Oncol. 2018;36(suppl 15):7532.

Mansfield C, Masaquel A, Sutphin J, et al. Patients' priorities in selecting chronic lymphocytic leukemia treatments. Blood Adv. 2017;1(24):2176–2185. PubMed PMC

Medicamentos La Administración Nacional de Medicamentos, Alimentos y Tecnología Médica. https://www.argentina.gob.ar/anmat/regulados/medicamentos

Australian Register of Therapeutic Goods (ARTG) Department of Health and aged care therapeutic goods administration. https://www.tga.gov.au/products/australian-register-therapeutic-goods-artg

Medicamentos. Agência Nacional de Vigilância Sanitária https://www.gov.br/anvisa/pt-br/assuntos/medicamentos

Oficina Virtual Invima. Instituto Nacional de Vigilancia de Medicamentos y Alimentos. https://app.invima.gov.co/ovirtual/

Latest Articles. State Institute for Drug Control (SUKL) https://www.sukl.eu/

National registers of authorised medicines. European Medicines Agency. https://www.ema.europa.eu/en/medicines/national-registers-authorised-medicines#human-medicines-section

Comisión Federal para la Protección contra Riesgos Sanitarios. Government of Mexico. https://www.gob.mx/cofepris/

DIGEMID - Portal Institucional La Dirección General de Medicamentos, Insumos y Drogas. https://www.digemid.minsa.gob.pe/webDigemid/

Pharmacopoeia Department State Institute for Drug Control (SUKL) https://www.sukl.sk/hlavna-stranka-1/english-version/pharmacopoeia/pharmacopoeia-department?page_id=5252

Centro de información de medicamentos (CIMA). Ministerio de Sanidad. https://cima.aemps.es/cima/publico/home.html

Medicines. Turkish Medicines and Medical Devices Agency (Titck) https://www.titck.gov.tr/faaliyetalanlari/ilac

Drugs@FDA: FDA-Approved Drugs. U.S. Food & Drug Administration. https://www.accessdata.fda.gov/scripts/cder/daf/index.cfm

Main page. Egyptian Drug Authority. https://www.edaegypt.gov.eg

Koffman B, Mato A, Byrd JC, et al. Management of CLL patients early in the COVID-19 pandemic: an international survey of CLL experts. Am J Hematol. 2020;95(8):E199–E203. PubMed PMC

Pavia CS, Wormser GP. Passive immunization and its rebirth in the era of the COVID-19 pandemic. Int J Antimicrob Agents. 2021;57(3) PubMed PMC

Find record

Citation metrics

Loading data ...

Archiving options

Loading data ...