A recent study suggests that monitoring anxiety and distress levels during watch-and-wait disease management time frames may improve the patient experience.
The management of chronic blood cancers often entails observation periods before and after treatment, known as “watch-and-wait” periods, and a recent study suggests that monitoring patients’ anxiety and distress levels during these time frames may improve the patient experience.
The study, published in the European Journal of Oncology Nursing, found that anxiety and distress were common among surveyed patients and were more significant than the physical symptoms of chronic hematological malignancies.
Patients surveyed for the analysis had a range of hematological malignancies: chronic lymphocytic leukemia (n = 10), follicular lymphoma (n = 8), marginal zone lymphoma (n = 5), and myeloma (n = 12). Although these cancers are generally treatable, they are not curable, the study authors noted.
“Immediate treatment may not improve outcomes for chronic hematological cancers, and an advantage of observation is that the potentially harmful side effects of chemotherapy are deferred or avoided altogether, which is particularly beneficial in patients with comorbidities,” the authors wrote. “It is, however, contrary to treatment-delay avoidance policies seen for cancer and may be incongruent with lay-expectations.”
With less clinician contact and knowing that their cancer is incurable, patients may face difficulties or survival impacts, the authors added.
The study was conducted to see how patients view the watch-and-wait approach to treatment, and experiences varied.
A total of 35 patients, 10 of whom were accompanied by relatives, participated in semi-structured in-depth interviews. Patients were all part of the Hematological Malignancy Research Network in the United Kingdom and ranged in age from 40 to 80 years at diagnosis. Interviews ranged from 45 to 90 minutes, and most took place in patients’ homes.
Of the patients interviewed, 7 started and stayed on watch-and-wait management, whereas the rest received at least 1 treatment, and 6 received multiple lines of chemotherapy and stem cell transplantation.
Patients reported a range of feelings about the watch-and-wait approach. Some indicated feeling acceptance and reassurance of their cancer’s indolence right away, whereas others were concerned about deferring treatment. The pathways for watch-and-wait management also varied across cancer types and patients, which was a source of distress and ongoing anxiety for some.
“We found that ‘dwelling on’ the cancer and on the uncertainty and unpredictability of watch and wait resulted in increased anxiety, which could be more problematic than any physical symptoms,” the authors wrote. “Difficulties were enhanced in patients who felt responsible for monitoring their symptoms but struggled to do this, and some were particularly anxious prior to appointments, fearing progression.”
Intense shock at diagnosis was a common sentiment, and many patients had a limited understanding of blood cancers. Patients with myeloma—a disease with nearly inevitable progression and a shortened lifespan—seemed to experience greater distress, the authors noted. Personal traits such as coping mechanisms and the frequency of clinician contact had an effect on reported distress, however. Infrequent clinician contact may exacerbate feelings of uncertainty due to minimal opportunities to ask questions and receive reassurance.
Patients used a range of methods to manage these difficulties. Some undertook activities to improve their well-being, and some opted to seek input from their friends or relatives. Patients who were receiving treatment reported feeling supported by clinical nurse specialists. Some patients felt that health care providers (HCPs) may underestimate the impact of a blood cancer diagnosis.
“Under-recognition of the impact of chronic hematological cancers by HCPs may be due to clinical staff viewing the needs of patients in terms of disease aggressiveness and treatment needs [or] comparing patients with chronic hematological cancers to those with more acute cancer subtypes that require intensive chemotherapy,” the authors wrote. “The impact of this has been reported by others.”
Overall, the study authors concluded that although patients had varied reactions to a chronic hematological cancer diagnosis and the watch-and-wait approach, the findings suggest it is important to monitor issues such as distress and anxiety in patients over time to identify and resolve difficulties early.
McCaughan D, Roman E, Sheridan R, et al. Patient perspectives of ‘watch and wait’ for chronic haematological cancers: findings from a qualitative study. Eur J Oncol Nurs. Published online May 13, 2023. doi:10.1016/j.ejon.2023.102349