Late effects linked to poor quality of life in long-term childhood cancer survivors

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Improved treatments and technologies are leading to more children than ever who survive cancer. Unfortunately, about 70% of these children experience late effects from their disease and treatment
30 years after their cancer diagnosis. These effects significantly impact their quality of life.

“The prevalence of these symptoms accounts for a huge variance in physical, mental, and social domains of quality of life among survivors,” said lead author I-Chan Huang, PhD, of the University of Florida Health College of Medicine in Gainesville. “If we think symptoms are the key to patients' quality of life, then if we can better manage their symptoms, we can improve their daily functional status and quality of life.”

The study, which was conducted with St. Jude Children's Research Hospital in Memphis, Tennessee, and published in the Journal of Clinical Oncology (2013; doi:10.1200/JCO.2012.47.8867), analyzed data from 1,667 childhood cancer survivors who participated in a St. Jude study looking at the long-term effects of cancer survival. The researchers used a patient-reported survey to measure quality of life. A specific symptom scale was designed to assess toxicities related to cancer treatment as outlined in the Children's Oncology Group guidelines.

The most common symptoms patients reported were head pain, pain in the back and neck, pain in areas other than the back and neck, disfigurement such as hair loss, and sensation abnormalities.

According to the research findings, participants' ratings of their own physical and mental quality of life dipped lower and lower for each additional symptom that they reported. Participants also reported more symptoms over time, with survivors reporting late effects up to 40 years after they were initially diagnosed with cancer. Approximately 1 in every 600 adults age 20 to 39 years is a survivor of childhood cancer.

About 70% of participants reported experiencing at least one late effect from their cancer. One-quarter of participants reported experiencing six or more late effects. Because the study did not account for fatigue or sleep disturbances, the actual percentage of survivors who experience late effects from cancer that affect quality of life could be even higher, Huang said.

The next step, Huang noted, is developing a tool kit to help physicians use this information in practice to help cancer survivors improve their quality of life. Although tools have been devised to make it easier for doctors to measure a patient's quality of life when they visit the doctor, physicians often don't know what to do with this information.

Because of this uncertainty and limited time and staff, only 16% of clinicians use quality-of-life measures in practice, according to a recent national survey Huang conducted on pediatricians' and subspecialists' attitudes and the barriers to assessing pediatric quality of life. Helping physicians calculate and interpret quality-of-life scores and better use this data to communicate with patients in decision-making processes is important, because the measures take into account health issues that affect patients' day-to-day lives.
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