BACKGROUND: The Rare Disease Act of 2002 defined conditions affecting less than 200,000 people in the United States as "rare"; all hematological malignancies qualify. Patients and caregivers often seek out information about rare diseases online.

METHODS: We designed 3 online patient and caregiver education programs focused on different rare hematologic malignancies: acute myeloid leukemia (AML) in 2017, hairy cell leukemia (HCL) in 2019, and peripheral T-cell lymphoma (PTCL) in 2020. These programs were each initially launched live-virtually and then made available on demand for up to 1 year. Program features included interactive panels with physicians, other health care professionals (HCPs), patient advocates, and patients; patient-story vignettes; polling and live Q&A. Through survey-based educational evaluations, we assessed the perceived impact of the online programs on patient and caregiver communication skills, shared decision-making (SDM), and health related behaviors, via a mix of qualitative and quantitative questions, all administered online both prior to, immediately post, and 2 months following program participation.

RESULTS: As of August 4, 2020, 1,221 individuals had participated in the educational programs via the online platform (AML 262, HCL 725, PTCL 234), and there were 12,237 views of the educational programs via Facebook (AML 8,673, HCL 2,261, PTCL 1,303). 153 patient and caregiver education participants completed the follow-up survey. Prevalent themes at 2 months follow-up across programs included improved communication with HCPs (33%), disease and care related knowledge improvement (30%), behavioral changes (e.g., exercise/diet) (19%), and empowerment and increased shared decision making (15%). Some examples of knowledge improvement included: guidance for better HCP communication, and disease and protocol knowledge. Examples of SDM/communication change included confidence to raise questions, engaging in more treatment decisions, and being honest with HCPs about issues that arise during care. Examples of behavioral impact included increased focus on diet, exercise, and sleep.

CONCLUSIONS: Education on rare hematologic malignancies improved patient and caregiver perceived knowledge, communication skills and health-related behaviors. Online education can be a helpful tool to reach individuals living with rare cancers and their caregivers, and assist them in learning how to best engage in a partnership role in managing their health.


Kreitman:PlatformQ: Honoraria. Steensma:Arena: Current equity holder in publicly-traded company; Onconova: Consultancy; BMS/Celgene: Consultancy; Takeda: Consultancy; H3 Biosciences: Research Funding; Astex Pharmaceuticals, Otsuka: Consultancy; Arrowhead Pharmaceuticals: Current equity holder in publicly-traded company; Aprea Therapeutics: Research Funding; CRISPR: Current equity holder in publicly-traded company. Horwitz:GlaxoSmithKline: Consultancy; Daiichi Sankyo: Research Funding; C4 Therapeutics: Consultancy; Beigene: Consultancy; Portola: Consultancy, Research Funding; Mundipharma: Consultancy; Innate Pharma: Consultancy; Corvus: Consultancy; Trillium: Consultancy, Research Funding; Seattle Genetics: Consultancy, Research Funding; Millenium/Takeda: Consultancy, Research Funding; Kyowa Hakka Kirin: Consultancy, Research Funding; Infinity/Verastem: Research Funding; Forty Seven: Consultancy, Research Funding; Celgene: Consultancy, Research Funding; Aileron: Consultancy, Research Funding; ADCT Therapeutics: Consultancy, Research Funding; Affirmed: Consultancy; Vividion Therapeutics: Consultancy; Verastem: Consultancy, Research Funding; Myeloid Therapeutics: Consultancy; Miragen: Consultancy; Kura Oncology: Consultancy; Janssen: Consultancy; ASTEX: Consultancy.

Author notes


Asterisk with author names denotes non-ASH members.