A study of patients with multiple myeloma in China found many do not have access to a caregiver and most have to travel to another city to receive treatment.
A new study is helping to paint a portrait of the factors that lead to lower quality of life after a patient has been diagnosed with multiple myeloma (MM).
The research, published in the journal CancerMedicine, is based on a survey of more than 400 people with MM in China. The authors found that difficulties experienced during the diagnosis and treatment process, psychosocial factors, and the effects of the disease and its treatment all have a significant negative effect on the health-related quality of life (HRQoL) of these patients.
Investigators from the First Affiliated Hospital of Sun-Yat Sen, including corresponding author Juan Li, PhD, noted that while QoL has been studied extensively in patients with MM, most of the research has been conducted on western populations, and such studies tend to be based on clinical trial data, which they said is not representative of the wider population of patients with MM.
In the current study, the authors sent out a questionnaire to people with MM in all 27 provinces of China. A total of 430 people responded, and they had an average age of 55.7 years.
The results of the survey showed a number of factors can affect HRQoL. Among them, patients who underwent autologous stem cell transplantation (ASCT) had higher HRQoL than those who did not have the transplant. However, toxicities were a major concern. A vast majority (91.5%) of patients on maintenance therapy said they intended to stop the treatment, mostly due to adverse events and the high cost of treatment.
“The application of ASCT has significantly improved the prognosis of patients with MM and prolonged the OS of patients,” Li and colleagues wrote. “However, as patient survival is prolonged, patients experience different levels of pain due to treatment-related toxicities.”
Patient HRQoL scores were improved when patients were diagnosed quickly, though the study found only 16.7% of patients were diagnosed within a month of the onset of symptoms. The reasons for the delayed diagnosis included lack of awareness of the severity of the condition, failure by the hospital to confirm the diagnosis quickly, and inability to pay for care.
Access to a caregiver benefited patients’ HRQoL, but more than one-third (38.4%) did not have a caregiver. More than half of the patients (56.3%) said they had to travel to another city to receive care, another factor that negatively impacted their scores on functional and symptom measures, though it did not impact overall HRQoL, the authors said.
Four in 10 patients in the study reported psychosocial challenges, such as anxiety and depression.
“Patients live with the uncertainty of a treatable but incurable cancer; they worry about how their illness will progress and are concerned about death and dying,” the authors said. “Overall, these findings suggest that patients need more psychological support during all phases of treatment.”
Basic demographic factors, like age and sex, yielded mixed results. In a univariate analysis, both factors appeared to be associated with HRQoL. However, when investigators performed a multiple linear regression analysis, neither factor emerged as an independent predictor of HRQOL.
The authors said these data should provide clinicians with tools to identify patients who are at risk of diminished HRQoL.
“Efforts should be made to identify persons at risk of low HRQOL earlier and improve the overall quality of life of these patients in China,” they concluded.
Li X, Liu J, Chen M, et al. Health-related quality of life of patients with multiple myeloma: A real-world study in China. Cancer Med. Published online September 2, 2020. doi:10.1002/cam4.3391