Press Release Details

Difficult Legacy for Adolescents and Young Adults with Cancer

Abstract

The Medical Oncology Group of Australia meeting in Hobart today heard of the plight of adolescents and young adults with cancer. The morning session was devoted to discussion regarding the specific problems faced by these young people in coping with cancer treatment and its aftermath.

Complete Article

11 Aug 2005

A unique program at the Peter MacCallum Cancer Institute in Melbourne has been set up to examine the issues that face teenagers and young adults suffering from cancer.

The OnTrac programme is a multidisciplinary group comprising of psychologists, doctors, social workers, an education adviser, music therapist and an art therapist who work with young people who have been diagnosed and treated for cancer. A focus group aged between 14 - 21 years were asked to identify the problems they faced in dealing with cancer diagnosis and treatment. A number of key issues were identified. These were provision of information, psychosocial support, fertility and relationships and post-treatment issues.

Information
In terms of information, all felt that they were not given adequate information. All used the World Wide Web to search through additional information. Most of them felt that information was provided to their parents and not themselves and in some circumstances they felt ignored or referred to in the third person. In many cases they felt that this was because their parents were trying to protect them from adverse information. They felt unanimously that they wanted comprehensive information given to them. All of the young teenagers and adults involved wanted to participate in decision-making regarding their treatment, treatment outcome and prognosis and they would all prefer to have received a comprehensive timetable regarding their treatment plan.

Psychosocial support
All of the adolescents and younger adults surveyed reported psychological problems. Only 50% of them had seen a social worker and few sought formal psychological support. They all felt that nursing staff provided them with informal psychological support and in most cases the patient responded to particular nurses. They felt that having patients of similar age around them was beneficial and that being with others of different ages was more challenging. In all cases the importance of nursing staff was very clear. The attitude of nursing staff impacted significantly on their coping skills. They all felt that continuity and consistency of nursing staff was just as important as they often identified with a particular nurse. The big issue for many was that they felt treated differently by friends after their diagnosis.

The fertility and relationships
All of the surveyed young people felt that future fertility was a significant issue. They felt that the issue of fertility was not as important to their treating team as it was to them. They subsequently found difficulty in forming new relationships and had grave questions regarding if and how to tell new friends and partners about their diagnosis of cancer.

Post-treatment
All of the surveyed young adults expressed ongoing concerns regarding their post-treatment care. Many of them worried about health issues. The big problem for them was uncertainty as to who to discuss their health concerns with. They were not necessarily happy to discuss the issues with their general practitioner.

There was also a reluctance to complain about symptoms such as tiredness and depression to their treating specialist because of the perceived importance of the treating specialist (‘the Professor’). They were worried that these general symptoms would be regarded as too trivial to warrant discussion with their specialist. This also highlights a growing awareness of the incidence of post-treatment depression in cancer survivors.

For many, they felt that the end of their cancer treatment meant a complete withdrawal from the support networks which they had come to rely upon. Many described what they felt was a honeymoon period of joy that their treatment was finished, followed by a period of emotional crash.

Susan Palmer drew attention to possible limitations of the research so far. She pointed out that there were a small number of adolescents and young adults in the study. Given the emotional turmoil associated with the diagnosis and treatment of cancer, many of the young people in this situation are not receptive to the information that is given i.e. they are told but they do not hear. Research is continuing as to the best way to help and support adolescents and young adults in coping with cancer and its treatment.

The Medical Oncology Group of Australia warmly appreciated this presentation and it was the subject of much discussion afterwards. The Medical Oncology Group of Australia is the professional body of Australian cancer specialists that works to keep the medical community abreast of the most up-to-date cancer treatments. Its membership is responsible for many clinical trials designed to improve cancer treatments for patients here in Australia.

For more information and interviews please contact:
Janine Hoffman
0412 175 956