Two years into the pandemic, CLL caregivers continued to cope with distress, live in isolation, and lose in-person care opportunities. They experienced increasing caregiving burden, shock, and devastation when a vaccine did not work for their loved one with CLL. They felt cautiously optimistic about Evusheld and frustrated in dealing with unsupportive individuals. They needed reliable ongoing information about COVID-19 risk mitigation and information about and access to vaccines and monoclonal antibodies.
CLL Society and the Leukemia and Lymphoma Society (LLS) partnered to support the survey development and data collection. The article was published in the Journal of Clinical Medicine in February 2023.
As a chronic disease, CLL contributes to long-term physical, emotional, and financial stress for patients and caregivers. In addition, as the COVID-19 pandemic unfolded, it became clear that CLL patients were more likely to get sick and die from COVID-19, to remain unprotected by vaccines, and thus need to maintain social distancing precautions. This increased the stress on patients and caregivers.
METHOD AND PARTICIPANTS
The study is based on an online survey of caregivers drawn from existing LLS and CLL Society databases. A total of 575 caregivers participated in the online survey. In addition, a subset of 12 spousal caregivers received an in-depth, semi-structured interview. The online survey was completed in February-March 2022; the interviews were conducted in April – May 2022.
RESULTS
- CLL caregivers reported that they struggled with the following:
- Coping with distress, e.g., fear and uncertainty
- Living in isolation, apart from family and friends
- Losing in-person care opportunities and in-home help
- Increasing caregiving burden, both financial and instrumental
- Realizing that the vaccine might not or did not work for their loved one with CLL
- Feeling cautiously hopeful about Evusheld
- Dealing with unsupportive or skeptical individuals
- CLL caregivers identified that they needed:
- COVID-19 risk information targeted to CLL patients
- Vaccination information regarding efficacy, access, timing
- Information about what to do to be safe, e.g., masks, sanitizers, etc.
- A constant flow of objective, scientific, reliable information
- Information about access to monoclonal antibody treatments, e.g., Evusheld, Remdesivir
CLL caregivers suffered distress, isolation, loss of care opportunities, increasing care burden, shock if vaccines did not work for their loved one, cautious hope about the impact of monoclonal antibodies, and frustration in dealing with unsupportive individuals. They needed timely, objective information about how to mitigate the risk of COVID-19 and the efficacy and availability of vaccines and monoclonal antibody treatments.
LINKS AND RESOURCES
You can read the full article here: Understanding the Impact of COVID-19 on Chronic Lymphocytic Leukemia (CLL) Caregiving and Related Resource Needs
You can find additional resources for caregivers and information specific to the COVID-19 pandemic here:
- CLL Society’s COVID-19 Action Plan
- COVID-19 Weekly Updates
- COVID-19 Official Statements
- COVID-19 Virtual Community Meetings (On-Demand)
- Mental and Physical Health Resources
- Caregiver Section
Linda Lannom
Linda Lannom holds an M.A. in Sociology and a law degree. For 20 years, she supported the Biostatistics Branch of the National Cancer Institute, managing case-control studies, cohort studies, and intervention trials in the U.S. and abroad. She and her husband, Larry, founded the Washington, DC, area CLL Society Support Group in 2017 and co-facilitated it until 2018 when they moved to Ohio. In 2019 they founded the Oberlin, OH, CLL Society Support Group, which they co-facilitate.
