More children are surviving cancer than ever before thanks to advances in treatment and technology. However, for about 70% of childhood cancer survivors, the effect of the disease and treatment 30 years later is sufficient to significantly affect their quality of life, according to a a new study led by the University of Florida (UF) in the US.

Lead author I-Chan Huang, associate professor of health outcomes and policy in the UF College of Medicine, says:

“The prevalence of these symptoms accounts for a huge variance in physical, mental and social domains of quality of life among survivors. 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.”

According to an Institute of Medicine report on childhood cancer survivorship and improving care and quality of life, 1 in every 640 adults aged 20 to 39 is a childhood cancer survivor. This equates to about 1 in 1,000 of the total US population.

For the study, Prof. Huang, who is also a member of the Institute for Child Health Policy at UF, worked with researchers at St. Jude Children’s Research Hospital in Memphis, TN. They report their findings in a recent online edition of the Journal of Clinical Oncology.

The researchers analyzed data from 1,667 childhood cancer survivors taking part in the St. Jude Lifetime Cohort Study, which is looking at the long term impact of surviving childhood cancer.

The survivors had all been treated for cancer at St. Jude in their childhood at least 10 years previously, and were all aged 18 and over.

The study data came from surveys that the participants filled in. These were designed to measure quality of life, assess toxicities related to cancer treatment and ongoing symptoms.

The symptoms were categorized into 12 classes, including heart-related, lung-related, head pain, movement-related, back and neck pain, pain in other parts of the body, disfigurement (for instance hair loss), sensation abnormalities, learning and memory, depression, anxiety, and “somatization” (where mental factors such as stress, anxiety, lead to physical symptoms).

The most common symptoms the survivors reported were head pain, back and neck pain, pain in other parts of the body, sensation abnormalities, and disfigurement.

The researchers found the survivors’ ratings of their mental and physical quality of life went lower and lower for each additional symptom they reported.

About 70% of the survivors reported experiencing at least one late effect from their cancer.

They reported late effects up to 40 years after the diagnosis in childhood.

About 25% of participants reported six or more late effects.

Also, the longer the time, the more symptoms were reported, as the researchers note:

“Longer time since diagnosis was associated with higher cumulative prevalence in all symptom classes.”

The study did not ask the childhood cancer survivors about sleep disturbance or fatigue, and if it had, Prof. Huang suggests the percentage experiencing effects impacting quality of life later in adulthood could be even higher.

He suggests the next step should be to develop a toolkit so clinicians can use these results to help cancer survivors improve their quality of life.

One of the problems doctors currently face is that while tools exist that help them assess patients’ quality of life, there are not any that help them and their patients decide how best to use the information.

This and pressures on time and staffing, may be why Prof. Huang, in a recent national survey of pediatricians and subspecialists, found only 16% of clinicians use quality of life measures in their practice.

Prof. Huang concludes:

We need to provide clear guidance about quality of life and a different structure to use patient-reported outcomes in clinical settings.”

He says the key step is to develop a way to diagnoze quality of life of individual cancer patients and survivors.

His team is already working on a classification system that uses individual attributes of poor quality of life, of which symptoms form a key part.

A grant from the National Cancer Institute helped fund the study.

In June 2013, St. Jude researchers working on the Lifetime Cohort Study, reported how they found childhood cancer survivors are at increased risk for chronic diseases through adulthood.