Having a rare, chronic disease can impact one’s life significantly, whether it’s physically, spiritually, socially, or psychologically. Not only this, but those responsible for these patients’ care are affected as well. Researchers wanted to understand rare diseases’ impact on both groups in regard to chronic lymphocytic leukemia (CLL), so they undertook a project to analyze prior studies on CLL’s effects on quality of life (QOL).
About the Research
The goal of this research was to gain a better understanding of what CLL does to patients’ and caregivers’ QOL in order to develop helpful, education tools. As many prior studies only take patients into consideration when it comes to QOL, the researchers saw a need for further investigation.
They utilized 75 studies that had been published from the first of January, 2015 until the 15th of June, 2020. In their review, they found that QOL in relation to physical wellbeing was most often evaluated, followed by psychological and social wellbeing.
When it came to spiritual wellbeing, the researchers were only able to find one article. This points to a need for further research into the category, as spiritual wellbeing can be very important to some patients, particularly for those in end-of-life care. In regard to these findings, one of the researchers said,
“These results support the consideration of spiritual well-being that may require a palliative versus curative approach for patients with CLL.”
Turning to information on physical wellbeing, there were various studies that discussed a variety of topics: side effect management, fatigue, nutrition, new therapies, sexual health, and geriatric considerations. The researchers discovered that while many studies may exist on this topic, there is a need for education in certain areas. These include adverse event management, nutrition interventions to impact CLL risk, symptom burden, effects of health-related QOL, and treatment modalities.
Psychological studies typically focused on anxiety and depression, with a few diverging to sexuality and just one to caregivers’ QOL. This clearly demonstrates the need for further research into these topics. However, social studies did investigate family caregivers and their health scores, along with the financial burden of CLL.
In the end, it is clear that more research must be done on the quality of life of CLL patients and their caregivers. With a better understanding, materials can be developed to help educate patients.
Chronic lymphocytic leukemia is a rare cancer of the bone marrow and blood. Affected individuals do not have properly functioning bone marrow, as it produces abnormal white blood cells – specifically lymphocytes – which then crowd out healthy cells. Doctors are unsure as to why this happens; all they know is that a genetic mutation occurs for some reason within the blood-producing cells of the bone marrow. Regardless of the cause, CLL causes symptoms like night sweats, fever, fatigue, weight loss, enlarged spleen, pain in the abdomen, frequent infections, and enlarged but painless lymph nodes. After diagnosing this cancer, treatment options consist of chemotherapy, targeted therapy, and a bone marrow transplant.
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