[Press and Publications] Obtaining a Diagnosis of Childhood Cancer - The Parents' Perspective


Greater partnership between parents and doctors essential, university research finds

A report by University of Leicester researchers published in The Lancet offers new insights into the experiences of parents whose children are diagnosed with cancer.

A research team from the University's Department of Epidemiology and Public Health and the Children's Hospital at the Leicester Royal Infirmary conducted interviews with 20 parents of children with cancer.

They found that the first signs of cancer in children are often vague and non-specific. Symptoms such as tiredness, “crankiness” and stomach ache were initially seen by many parents as common minor illnesses.

Parents said that they sought urgent medical attention when children fail to improve, or when they began to develop new and alarming symptoms such as weight loss and difficulty with urination. But some parents reported difficulty in persuading doctors that there was something wrong with their child, and also said they experienced long delays in getting appointments with specialists.

GPs often tended to assume that children’s symptoms were due to minor illnesses when they first took their child to the doctor, parents reported. The researchers point out that this is not unreasonable, as many of the very early symptoms of cancer are virtually indistinguishable from other common childhood illnesses. GPs were able to detect cancers such as leukaemia relatively quickly, using a blood test.

Children who had cancers that were more difficult to diagnose had greater problems in being taken seriously by doctors, parents said. Two children in the survey were never referred to specialists. Another five reported long delays in getting hospital appointments, and said that the children deteriorated while they waited.

Some parents began to resort to visits to A&E or to private doctors to try to get the attention they felt their child needed. Some children were only diagnosed when a medical crisis, such as kidney failure, developed.

Commenting on their reactions to the diagnosis of cancer in their child, parents said that how they felt was affected by their experiences of obtaining the diagnosis. Those who had been diagnosed quickly felt shocked and numb. Some of these who had experienced delays experienced feelings of vindication and felt that now something could be done for their child.

“Many of the very early symptoms of childhood cancer mimic those of common minor illnesses, and there is no easy way of telling them apart at the early stages,” authors Dr Mary Dixon-Woods and Dr David Heney said. “What our work does is to show the importance of partnership between doctors and parents in working towards a diagnosis when a child keeps returning with symptoms that seem to be getting worse.

"Most of the time there will be nothing seriously wrong with the child, but very occasionally it will turn out that the child has cancer. We need to have ways of dealing with these rare and difficult to diagnose health problems, and our study shows how doctors can learn from patients. The publication of this paper in The Lancet, a leading medical journal, shows the willingness of doctors to listen”.

The researchers added that the improved survival of childhood cancer has been one of the success stories of the past 50 years. In the early 1950’s there were hardly any survivors from childhood leukaemia, but nowadays 75 to 80% of children are expected to survive the condition.

Note to editors: Further information is available from: Dr Mary Dixon-Woods, Lecturer in Health Policy, Department of Epidemiology and Public Health, University of Leicester, 22-28 Princess Road West, Leicester LE1 6TP (telephone 0116 252 3204/252 3156, Fax 0116 252 3272, Email md11@leicester.ac.uk).

Dr David Heney, Senior Lecturer in Paediatric Oncology and Medical Education, Children’s Hospital, Leicester Royal Infirmary, Leicester LE1 5WW (telephone 0116 258 5309).

Also available for media interviews: Dr Bridget Young, email by1@le.ac.uk, tel 0116 252 3214.

The report, entitled Parents’ Accounts of Obtaining a Diagnosis of Childhood Cancer by Mary Dixon-Woods, Michelle Findlay, Bridget Young, Helen Cox and David Heney will appear in The Lancet, 3 March 2001.

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Last updated: 28 February 2001 16:03
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