Unmet needs in adulthood to childhood brain cancer

Patients treated in childhood for tumours of the central nervous system (CNS) have persistent and unmet primary health care needs in adulthood, a comprehensive study from Karolinska Institutet, which examined a whole cohort of patients in Sweden.

The results are presented in an upcoming issue of the American scientific journal cancer. The study was included 526 adults, the former child of cancer patients and 550 parents. The researchers studied the current health care needs of patients, on the basis of reports of patients and parents. Permanent maintenance and support requirements have been in multiple domains, such as medical care, psychosocial support services, identifies need for knowledge about the disease and its consequences, and coordination of care and support.

The survivors gave one or more current 40 percent, and that their health care needs exceeded the accepted average for the general population, and 41percent so far had not health-care needs. Relatively often needs with regard to the area of medical care were more satisfied (unfulfilled to 20 percent of patients reported), compared to other areas. The most reported unmet needs for psychosocial services (40 percent), information (35 percent) were followed by lack of adequate disease. In the considerable proportion of needs, female survivors, those who were adult survivors with not health care in the diagnosis of disciples, and those with a poorer available general health status more reported unmet needs.

"Our results show that the survivors of CNS tumors documented needs of health care or follow-up required, which continue into adulthood", says Associate Professor Krister k Boman, a Swedish national research project causes of which is the current study part. "We have also notes that that, as in the case for these survivors of CNS tumors, monitoring, maintenance and support services do not always adequately given the needs of this group address".

According to the researchers, provides the method of collecting data from patients and their parents against the errors that sometimes arise when patients themselves underestimate their own problems and needs to support. To improve the future reviews of today's young adult patients needs, follow-up has early intensified are, and long-term monitoring and follow-up must on extended to adulthood, the researchers conclude.

"The CNS-tumor treatments are change and improve, i.e. positive advances in treatments, but probably also undesirable late long-term effects, which are today unknown." "Our results show that the knowledge they must continuously be updated to correspond to the conditions for each new generation of survivors", says Krister k Boman..

The study was funded by the Swedish Childhood Cancer Foundation and is a part of a current major national research project on the effects, the requirements for intervention and follow-up of patients and families after cancer in childhood CNS.

Sources: Karolinska Institutet, AlphaGalileo Foundation.