A Timelapse of Patient and Provider Care Perceptions and Educational Needs for CLL over Three Years of Tailored Educational Interventions

BACKGROUND: The chronic lymphocytic leukemia (CLL) care paradigm has undergone significant changes over the last decade resulting in a steady 5-year survival increase. With targeted regimens as the standard of care for most patients with CLL and a continuous release of new and long-term data, there was a distinct need to update both providers and patients/caregivers on new options, refining their use in practice, and empowering patients to be partners in their care.

METHODS: Over the last 3 years, digital education was provided to patients/caregivers on CancerCoachLive.com and providers on OMedLive.com. In 2020 patient-provider education was implemented; the outcomes informed the needs for the 2021 serialized learning initiative which utilized branched learning algorithms. The disparities among providers and patients prompted education on special topics in 2022. In total 11 programs were implemented utilizing multiple educational formats: 4 for patients/caregivers and 7 for providers. Each program was evaluated utilizing knowledge/competence questions which were administered pre-, immediate post-, and 2 months post-activity; in addition to polling questions and patients/provider-reported challenges in CLL management. Statistical significance was determined using Chi-Square for repeated knowledge and competence questions.

RESULTS: These educational activities were viewed by approximately 39,800 patients/caregivers and providers, as of August 1^st, 2022. The 2020 activity revealed significant misalignments in perceptions of care between patients and providers, including a strong preference from patients for discussions on treatment risks and benefits at the time of treatment decision-making. A thematic analysis of questions from each year's initiative provided insights into critical topics of concern for patients/caregivers: these included long-term and real-world data application, emerging fixed-duration regimens, side effect expectations, and clarification of indications for BTK inhibitors. Only 32% of providers demonstrated competence managing side effects associated with BTK inhibitors; and 38% were competent in selecting frontline treatment regimens for CLL.

These persistent gaps in frontline treatment considerations and adverse event management warranted a point-of-care case-based approach in 2021. As new data emerged, the 2021 initiative addressed disparities in care perceptions and was successful in improving competence in point-of-care decisions for patients with unfavorable genetic characteristics. A range of 23% to 72% increase from pre- to post-assessment was observed. Analysis of the branched learning algorithms employed revealed a greater need for education in the relapsed/refractory setting (54%) versus the newly diagnosed setting (46%) as there was greater interest in relapsed/refractory CLL setting determined by learner selection. Under each treatment setting, older patients with comorbidities and high-risk CLL were selected for initial viewing.

In 2022, patients and providers continue to identify their greatest barriers in care management and address long-term and real-world data application. Qualitative data representing practice impact for providers and behavioral changes among patients/caregivers will be shared.

CONCLUSIONS: This multi-year CLL educational initiative has been successful in improving care and aligning patients and providers on management preferences. The identification of persistent gaps over time has informed the educational design and content of subsequent years. This timelapse perspective provided insights of how new data released affected patient and provider challenges, behaviors, and educational needs.

O'Brien:Acerta, Alliance, Beigene Ltd, Caribou Biosciences Inc, Gilead, Kite, Loxo Oncology, Mustang, Nurix Therapeutics Inc, Pfizer, Pharmacyclics, Regeneron, Sunesis, and TG Therapeutics.: Research Funding; AbbVie, Alexion, Amgen, Aptose Biosciences, Astellas, AstraZeneca, Autolus, Bristol Myers Squibb, Celgene, DynaMed, Eli Lilly and Company, Gilead, GlaxoSmithKline, Janssen Oncology, Johnson and Johnson, Juno Therapeutics, MEI Pharma Inc, Merck, NOVA Resea: Consultancy. Mato:BeiGene: Honoraria, Research Funding; Pfizer: Research Funding; Octopharma: Honoraria, Research Funding; Janssen: Honoraria, Research Funding; Dava: Honoraria; Curio: Honoraria; DTRM Biopharma: Honoraria, Research Funding; Johnson & Johnson: Honoraria, Research Funding; Acerta: Research Funding; Genentech: Honoraria, Research Funding; PerView: Honoraria; PER: Honoraria; AstraZeneca: Honoraria, Research Funding; AbbVie: Honoraria, Research Funding; Genmab: Honoraria, Research Funding; Adaptive Biotechnologies: Honoraria; LOXO: Honoraria, Research Funding; Nurix: Research Funding; Pharmacyclics, LLC: Honoraria, Research Funding; TG Therapeutics, Inc: Honoraria, Research Funding; BMS: Honoraria; Medscape: Honoraria. Davids:AstraZeneca: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Janssen: Consultancy, Membership on an entity's Board of Directors or advisory committees; Adaptive Biotechnologies: Consultancy, Membership on an entity's Board of Directors or advisory committees; Research to Practice: Honoraria; BeiGene: Consultancy, Membership on an entity's Board of Directors or advisory committees; TG Therapeutics: Consultancy, Research Funding; Ono Pharmaceuticals: Consultancy; Novartis: Research Funding; Genentech: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Eli Lilly and Company: Consultancy, Membership on an entity's Board of Directors or advisory committees; AbbVie: Consultancy, Membership on an entity's Board of Directors or advisory committees, Other: Travel expenses, Research Funding; Bristol-Myers Squibb: Consultancy, Membership on an entity's Board of Directors or advisory committees; Merck: Consultancy; Verastem: Consultancy, Research Funding; Ascentage Pharma: Consultancy, Membership on an entity's Board of Directors or advisory committees, Research Funding; Takeda: Consultancy.