Quality of life for non-Hodgkin lymphoma patients a complex phenomenon

January 11, 2013 – The DCRI’s Sophia Smith, PhD, and Amy Abernethy, MD, used mail-in surveys to conduct an in-depth analysis of cancer patients’ perceived quality of life.

Doctors should be alert to conditions that could affect quality of life for long-term survivors of non-Hodgkin lymphoma, according to a new study by DCRI researchers.

The study, conducted by the DCRI’s Sophia Smith, PhD; Amy Abernethy, MD; and colleagues from the University of North Carolina at Chapel Hill and the University of California at Los Angeles, appears in the January 10 issue of the Journal of Clinical Oncology.

To date, there has been little research into the long-term quality of life of patients with non-Hodgkin lymphoma, even though it is one of the most common types of cancer and has a high survival rate. The average non-Hodgkin patient may experience alternating periods of worsening and improving symptoms. These changes can make it difficult for clinicians to help improve and maintain a patient’s quality of life.

To improve clinicians’ understanding of how the disease affects quality of life for these patients, the researchers developed a follow-up to a 2005 survey of 866 non-Hodgkin patients who had been diagnosed at least two years earlier. That survey found that 39 percent reported symptoms of post-traumatic stress disorder and other mental health issues. For the follow-up survey, the researchers mailed a new questionnaire to 682 of the original participants. The new survey, conducted in 2010, contained questions about the patients’ perceptions of their physical and mental well-being.

Of the 682 patients that were sent the survey, 566 responded. On average, the respondents were diagnosed about 15 years earlier. The majority of respondents were white and female. Thirty-two percent described their quality of life as high or improved since the 2005 survey, but 42 percent said their quality of life had declined since then. Patients who received only biological therapies (rather than chemotherapy) were more likely to report an improvement in their physical health. Patients who were older and suffered from additional maladies were more likely to say their quality of life was poor. Respondents who had more severe physical symptoms, lacked social support networks, and received bone marrow transplants were also more likely to report poor quality of life.

The researchers concluded that the perception of quality of life is a complex phenomenon that is influenced by multiple factors and can change over time. There is no single strategy for addressing quality of life issues in non-Hodgkin patients, they said. Instead, doctors should be alert to the presence of additional ailments or to the absence of support systems in a patient’s life. These may indicate a need for additional, personalized treatment and care.