Consultant and researcher Magnus Aasved Hjort believes that people who survive childhood cancer should receive far better support as adults.

It often starts when the child is in nursery.

Their skin is paler than usual. Bruises may appear even though the child has not hurt themselves. Some begin to limp and complain of pain in their arms and legs. Some children also have difficulty breathing and become lethargic.

Acute leukaemia is caused by the uncontrolled growth of immature blood cells that crowd out healthy blood cells. It is the most common form of cancer affecting children.

The vast majority of those affected are between two and five years old. To survive, the child must undergo extremely intensive treatment for around two years.

The first year is spent largely in hospital around the clock, where chemotherapy is administered intravenously and into the central nervous system.

Very high survival rates

“Some decades ago, all children who developed acute leukaemia died. Today, we are actually able to save the lives of more than 90 per cent of them. The fact that we can save so many is a major medical success story,” says Magnus Aasved Hjort, Associate Professor of Paediatric Oncology at NTNU.

Hjort is also a consultant at the Department of Paediatric Cancer and Blood Disorders at the Children and Young People’s Clinic at St. Olav’s Hospital.

Research conducted by Hjort and his team shows that surviving cancer at such a young age can come at a cost in later life.

A recently published study involved 132 people aged 18–40 who had survived childhood cancer. Participants were recruited from Oslo University Hospital and St. Olav’s Hospital in Trondheim. They completed questionnaires
about cognitive functioning, psychological symptoms and fatigue.

The results showed that:
49 per cent had clinical symptoms of depression.
41 per cent had clinical symptoms of anxiety.
43 per cent reported significant fatigue.
28 per cent reported difficulties with various cognitive functions at clinically relevant levels.

The researchers found these levels to be substantially higher than levels reported in some previous studies, and within healthy controls.

Significantly more struggle with mental health problems

In Norway, around 7 to 10% of the adult population experience depression during their lifetime, while the prevalence of anxiety is between 15 and 20%.

The study indicates that depression and anxiety are considerably more prevalent among adults who have survived childhood cancer.

“It is surprising that so many experience anxiety and depression,” says Anna Franzén, a medical student at NTNU. Franzén participates in the Medical Student Research Programme, where this study forms part of a planned PhD trajectory.

“It is well known that many childhood cancer survivors experience various health problems later in life, but the fact that so many of these children struggle with their mental health as adults is new knowledge. Follow-up studies will be needed to understand how these difficulties develop over time,” says Franzén.

She points to various aspects of the prolonged and intensive treatment required for survival that can cast a shadow over adult life.

They survive, but life is put on hold

“The children are very young when they become seriously ill, and they are at a vulnerable stage in the development of their social, mental and cognitive skills. We believe that chemotherapy itself is an significant cause of the problems that arise later in life, but spending such a long time in hospital can also mean that other important aspects of development are put on hold,” says Franzén.

Time that that could have been spent learning to interact with other children in nursery or school is put on hold. Time that should have been spent learning to play football or dance ballet is put on hold. Time that should have been spent beginning to read and write is put on hold.

Everything except survival is more or less put on hold for two years. That is a long time for a young child.

“Outside the hospital, life and their friends race ahead. We try to let them spend as much time as possible in nursery or school so that they can develop their social skills as much as possible, but we have to take their weakened immune systems into account,” says Hjort.

Difficulty concentrating

The study shows that 28% reported difficulties with various cognitive functions at clinically relevant levels.

These include significant problems with concentration, attention, planning, initiating tasks and completing them.

“These functions are also extremely important for regulating emotions and thoughts. This means that a person may be less able to manage negative thoughts and therefore more vulnerable to developing anxiety and depression,” says Franzén.

She emphasises that cognitive difficulties do not only affect mental health. They can also have consequences for functioning at school and at work, as well as for financial independence.

“It has been documented that this can reduce the quality of life for cancer survivors,” says Franzén.

Hjort points out that as more children survive cancer, there is a growing population of adult childhood cancer survivors.

Follow-up should continue throughout life

“Today, children are followed up by a paediatric oncology department until they turn 18. After that, all follow-up within the specialist healthcare service ends. What we have identified here is a need for more follow-up so that these people have the opportunity to participate in society on an equal footing with others,” says Hjort.

He believes that a dedicated late-effects clinic for childhood cancer survivors should be established.

“I collaborate extensively with hospitals internationally. In Sydney, for example, all children who have had cancer are offered follow-up at a specialised outpatient clinic for the rest of their lives. That is clearly how it should be in Norway as well,” Hjort says.

The study is funded by the Norwegian Cancer Society and is led by NTNU’s Department of Psychology, where Professor Trude Reinfjell is the project leader.