Adult survivors of childhood CNS tumors have persistent, unmet health care needs

Patients treated in childhood for tumours of the central nervous system (CNS) have persistent and unmet health care needs even in adulthood, according to a comprehensive study from Karolinska Institutet which investigated an entire cohort of patients in Sweden.

The findings are presented in an upcoming issue of the American scientific journal Cancer. The study included 526 adults that were former child cancer patients, and 550 parents. The researchers studied the current health care needs of the patients, based on reports from patients and parents.  Persistent care and support needs were identified within several domains, such as medical care, psychosocial support services, need for knowledge about the disease and its consequences, and coordination of care and support services.

Among the survivors, 40 percent reported that their health care needs exceeded the assumed average for the general population, and 41percent had one or several current unmet health care needs.  Relatively frequent needs related to the area of medical care were more often satisfied (unmet reported by 20 percent of the patients), compared to other areas. The most commonly reported unsatisfied needs were those concerning psychosocial services (40 percent), followed by lack of sufficient illness information (35 percent). In the considerable proportion of adult survivors with unmet health care needs, female survivors, those who were younger at diagnosis, and those with a poorer present general health status reported unmet needs to a greater extent.

"Our findings show that survivors of CNS tumours have documented health care needs or follow-up needs that continue into adulthood", says Associate Professor Krister K. Boman, who leads a Swedish national research project of which the current study is a part. "We also have indications that, as was the case for these survivors of CNS tumours, monitoring, care and support services do not always adequately address the needs of this particular group".

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

"The CNS-tumour treatments are changing and improving, which means positive progress in treatments, but probably also undesirable long-term late effects that are unknown today. Our findings show that knowledge of these needs to be continuously updated to match the conditions of each new generation of survivors", says Krister K. Boman.