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General Discussions

Rare Cancers

By Lisa Schulmeister, MN, RN, ACNS-BC, OCN, FAAN
The 50th annual ASCO meeting, held earlier this month (June 2014), included posters and presentations on a wide variety of topics. One of the abstracts (e20577, available here) that caught my eye was a study of the long-terms effects of treatment of rare cancers. What made this study unique was that data were gathered from the patients themselves.

Researchers from around the United States sought to describe physical and mental health outcomes of patients enrolled in the Rare Cancers Genetic Registry. They surveyed 321 registrants who had been treated for rare hematologic (31%), genitourinary (21%), gastrointestinal (18%), sarcoma (15%), head/neck (11%) or gynecologic (4%) cancers. Median time since diagnosis was 3 years and 69% were no longer receiving treatment. Four outcomes were assessed, reflecting overall physical and mental health, psychological distress, and loneliness. Rare cancer registrants' mean physical health score was significantly poorer than in the general United States population, with registrants who were older at diagnosis, unpartnered, and still receiving treatment reporting poorer physical health. Registrants' mean mental health score was better than in the general population, but younger diagnosis age and unpartnered status were associated with poorer mental health. They also reported greater psychological distress and there was higher distress levels reported by currently treated and unpartnered registrants. Loneliness varied significantly by cancer type, and was higher among less educated and unpartnered registrants. The main finding of this study is that increased psychological surveillance may be warranted for unpartnered patients with rare cancers.
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