Scale helps to measure the utility of genetic counseling in tackling fear of cancer

"Excessive concern about cancer can result in two kinds of behaviour. Some people undergo excessive and unnecessary diagnostic tests, while others do not want to take any, out of fear that they will discover they have cancer," says Esther Cabrera, lead author of the study and director of the School of Health Sciences at the Mataró-Maresme Technocampus (Barcelona).

Genetic counselling, in the case of patients with a family history of the disease, is the right kind of tool for reducing these worries. However, until now there has been no tool in the Spanish language for evaluating the effectiveness of this initiative, nor any instrument to evaluate the fear of suffering from cancer.

"I could say that genetic counselling works well, but I couldn't measure this," says Ignacio Blanco, another author of the study and director of the Genetic Counselling Unit at the Catalan Institute of Oncology (ICO) in Barcelona. Now he has access to the 'Escala de Preocupación por el Cáncer' (EPC), an equivalent of the Cancer Worry Scale that shows him "that the degree of patients' concern does not increase following this counselling -- quite the contrary," he adds.

The study, published in Medicina Clínica, shows that the EPC is a valid and reliable scale for evaluating concern about cancer in healthy people. It is a translation and a cultural adaptation of the English-language Cancer Worry Scale: six questions that measure concern on a scale ranging from 6 (the least) to 24 (the highest level).

From psychology to general medicine

The research study was carried out on 212 healthy women without any family history of breast cancer who attended the ICO Genetic Counselling Unit. Before the experts studied their family trees, the patients answered the test questions. Several days after the genetic counselling, the researchers once again distributed the scales to analyse the effectiveness of this tool.

One of the advantages of this tool is that it can be used in any of the branches of medicine that a patient seeks help from -- psychology, oncology or even general medicine. "The scale can be used in primary healthcare as a filtering instrument among the healthy population to identify individuals with high levels of concern about cancer," the researchers say.

The simplicity of the questions (for example, "How worried are you about the possibility of developing cancer one day?") and the answers ("Not at all worried/A bit worried/ Quite worried/Very worried") make it possible to easily objectify "something that is difficult to measure," explains Esther Cabrera.

The tool has shown itself to be effective in alerting healthcare professionals to certain healthy patients who are unwilling to undergo preventive testing. "On many occasions, their fears are related to their decision about whether or not to take preventive measures that would help them avoid cancer or diagnose it a very early stage," Cabrera points out.

The researchers add that the tool will be useful for comparing and understanding the factors that affect the degree to which different groups of people worry. This would also make it possible to customise educational initiatives to improve people's quality of life.