More research is needed on how a chronic lymphocytic leukemia diagnosis can affect patients and their caregivers.
Chronic lymphocytic leukemia (CLL) not only changes the life of the person receiving the diagnosis, but the lives of their caregivers and family members as well. Researchers recently analyzed studies that looked at the physical, psychological, social and spiritual well-being of CLL caregivers and patients, with the hopes of developing an educational tool to empower patients and their loved ones.
“It is well established that a diagnosis of cancer contributes to significant burden, particularly related to (quality of life), on both the patient and the caregiver,” the authors wrote. “However, in this scoping review, only one study focused on effects in caregivers; the remaining studies focused on QOL effects only in patients with CLL.”
In a review of 75 relevant studies published between Jan. 1, 2015 and June 15, 2020, the researchers found that physical well-being was the most frequently evaluated quality of life (QOL) domain, followed by psychological and then social. Only one study included spiritual wellbeing of patients and their caregivers after a CLL diagnosis.
More attention should be paid to spiritual well-being, especially in end-of-life care, according to the authors and the single spiritual article they found.
“This study demonstrated that the somatic, psychic and spiritual end-of-life care following allogeneic stem cell transplantation could be optimized,” the authors wrote. “The transplant team is challenged to realize the necessity of switching the curative concept into a palliative ambition… These results support the consideration of spiritual well-being that may require a palliative versus curative approach for patients with CLL.”
Regarding the physical aspect, studies discussed topics including nutrition, fatigue, geriatric considerations, new therapies, side effect management – namely high blood pressure and cardiovascular events – and sexual health.
“Together, these articles highlight patients’ needs for education in the areas related to physical QOL, including treatment modalities, adverse event management, symptom burden and effects on health-related QOL, and nutrition interventions to impact CLL risk, with a particular focus on the subset of elderly patients,” the authors wrote.
Psychological studies mainly focused on depression and anxiety, with some looking at sexuality and only one investigating health utility scores in family caregivers for patients with leukemia. “Taken together, these articles demonstrate patients’ needs for support in the areas related to the psychological QOL component, including the effects of cancer-related stress and symptoms of health-related QOL, and effects of a diagnosis on both patients and caregivers in terms of health-related QOL,” the authors said.
Social studies tended to look at the financial hardships that patients with CLL often face, as well as family caregivers having lower health utility scores than the rest of the population, “which highlights the importance of addressing the concerns of this population.”
Ultimately, more work needs to be done to better understand – and improve – the quality of life of both patients with CLL and their caregivers.
“Overall, these findings clearly highlight the needs of patients with CLL related to the physical, psychological, social and spiritual QOL domains and the importance of including this information as part of a patient education tool that is provided to patients and their caregivers to be used at CLL diagnosis and throughout the continuum of care,” the authors wrote.
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