PURPOSE

Due to their heightened risk of developing late-occurring adverse outcomes, pediatric cancer survivors are advised to receive follow-up care in specialized Survivor Clinics. However, little is known about the impact of attending such clinics on psychosocial adjustment, knowledge, and morbidity. This study assesses the differences between those who attended a Survivorship Clinic and those who did not on knowledge, perception of risk, and psychosocial adjustment.

METHODS

We assessed 102 survivors who attended our Long-Term Follow-Up (LTFU) Clinic and 71 survivors never seen in a specialized clinic (non-LTFU). Participants were diagnosed at least 5 years prior to the assessment, were at least 20 years old, and had no evidence of active disease. Groups were matched on gender, age at cancer diagnosis, diagnosis, and race.

RESULTS

On average, participants were currently 30 years of age and had been diagnosed with cancer around age 12. Most common reasons that non-LTFU survivors did not attend the clinic were "not aware" (71 %) or "not interested" (16 %). Survivors in each group were able to accurately report their cancer diagnosis, but few knew specific treatment information. There were no significant differences regarding survivors' perceptions of risk of future health problems with both groups similarly underestimating their risks. A significant minority in each group reported psychological or emotional problems (16-18 %), post-traumatic stress disorder (4.2-6.9 %), and/or psychological distress (7.8-19.7 %).

CONCLUSIONS

Survivors are in need of continued education about their specific cancer treatments, recommended follow-up practices, the importance of survivorship care, and their specific risks for late effects.

IMPLICATIONS FOR CANCER SURVIVORS

Among those childhood cancer survivors who do attend a Survivor clinic, a majority are in need of continued education about their specific cancer treatments, recommended follow-up practices, and risk of late effects. As many survivors of pediatric cancer appear to be unaware of the existence of Survivor clinics, improved methods of transitioning survivors after completion of treatment are needed.