Quality of life (QOL) is an important aspect of cancer care that deserves consideration during clinical decision-making.1 For example, patients with chronic lymphocytic leukemia (CLL) often have anxiety or depression symptoms due to their diagnosis, disease symptoms, or treatments.2,3 In addition, caregivers of patients with CLL also report psychological distress that can sometimes exceed that faced by the patient for whom they are providing care.3
Shared decision-making—the process whereby doctors, patients, and caregivers work together to align on the preferred course of treatment—and enhanced patient education have been shown to improve patient-reported outcomes and increase patient satisfaction with their care.3 One of the first steps in shared decision-making is understanding what considerations are most important to patients.3
In a recent study, investigators sought to analyze published research on patients with CLL and their caregivers to assess patients’ informational needs with regard to their physical, psychological, social, and spiritual well-being.3 Outcomes of this study will be used to develop a digital education platform designed to empower patients and their caregivers throughout the entire CLL patient journey.3
Overall, the researchers found 75 articles that were published between January 1, 2015, and June 15, 2020, that met the criteria for analysis.3 Of the included studies, more than half were conducted in the United States and most of the others were conducted in Europe.3 None of the studies explored the relationship between patients with CLL and their caregivers, and only 1 of the studies was designed to assess the health status of caregivers.3
Most of the included articles (92%) evaluated physical QOL in patients with CLL.3 In general, these articles highlighted the need for patient education in various areas related to physical QOL, including types of treatment, side-effect management, managing symptoms, and nutritional changes that may impact CLL risk, with a particular focus on elderly patients.3
Nearly 17% of the articles analyzed in this study evaluated psychological QOL.3 Articles covered psychological distress, depression, and anxiety, but also the importance of sexuality and body image for patients.3 Overall, these articles suggest that patients could use educational materials on dealing with the effects of cancer-related stress and symptoms, and both patients and caregivers could use support on the effects on health-related QOL of a CLL diagnosis.3
Social well-being was only covered by about 5% of articles, which focused on patient support networks and financial components.3 Among the main topics reported were the financial burden imposed by using the latest targeted therapies in CLL and the role that social media could play in capturing patient-reported outcomes.3 Given the importance of these aspects on a patient’s well-being, educational materials on social QOL represent an obvious unmet patient need.3
On the topic of spiritual well-being, only a single article (about 1%) was identified.3 That study showed that end-of-life care could be optimized, and suggested that supporting spiritual well-being may require a switch from intending to cure the disease to easing the burden of illness at the end of a patient’s life.3
Taken together, the results of this analysis provide a set of topics that could be used to better educate patients with CLL throughout their treatment journey.3 Further research on spiritual well-being, as well as the QOL impacts on caregivers, would be useful for helping to improve clinical practice.3
References
- Slater H. Quality-of-life preferences in treatment decision making. July 22, 2020. www.cancernetwork.com/view/quality-of-life-preferences-in-treatment-decision-making. Accessed September 29, 2021.
- Leukemia & Lymphoma Society. Anxiety and depression. www.lls.org/treatment/managing-side-effects/anxiety-and-depression. Accessed September 29, 2021.
- Gentry E, Passwater C, Barkett NL. Physical, psychological, social, and spiritual well-being of patients with chronic lymphocytic leukemia and their caregivers: a scoping review. J Oncol Nav Surviv. 2021;12:182-191.