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WEDNESDAY, March 23 (HealthDay News) -- Double informant data indicate that a considerable percentage of adult survivors of childhood central nervous system tumors have long-term unmet health care needs (HCNs), according to a study published online March 8 in Cancer.
Emma Hovén, Ph.D., from the Karolinska Institute in Stockholm, Sweden, and colleagues assessed the HCNs of adult survivors of childhood central nervous system tumors. Data were provided by 529 survivors and 550 parents. HCNs were evaluated using a questionnaire encompassing medical care, care coordination and communication, illness education, and psychosocial services, and were classified as no need, met need, or unmet need. The 15-item health utilities index mark 2/3 was used to assess functional later effects in survivors.
The investigators found that 41 percent of survivors had current unmet HCNs, which were most frequently reported in the psychosocial services domain (40 percent of survivors). Unmet needs were also reported in the domains of illness education (35 percent of survivors), care coordination (22 percent), and medical care (15 percent). Those survivors who experienced late effects had a greater percentage of unmet needs and an increase in HCNs. The level of agreement between survivors and parents was satisfactory with respect to HCNs, but varied from poor to satisfactory with respect to unmet needs.
"Identified unmet HCNs indicate that the domains of Illness Education and Psychosocial Services are primary targets for improvement. Furthermore, the results of the current study verify the importance of adequate psychological services being regularly integrated into ordinary long-term follow-up," the authors write.
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