Unmet Needs of Adult Survivors of Childhood Cancers: Associations with Developmental Stage at Diagnosis, Cognitive Impairment, and Time from Diagnosis

Abstract

Purpose: Adult survivors of childhood cancers (ASCCs) are a unique and growing population. Because these individuals were diagnosed in childhood, their developmental stage at diagnosis may influence medical sequelae and perception of their cancer diagnosis and potentially result in long-term complications and challenges. Our aim was to determine how developmental stage, time since diagnosis, and cognitive impairment relate to Canadian ASCC distress and unmet needs.

Methods: Canadian ASCCs aged 19-77 years (N = 115) diagnosed between ages 0 and 5 (n = 25), 6 and 12 (n = 22), or 13 and 18 (n = 68) completed demographic, neurocognitive self-report, depression, and anxiety and unmet needs questionnaires.

Results: The developmental stage predicted distress, β = -0.29, p = 0.01. Survivors diagnosed in middle childhood reported significantly more distress than those diagnosed in adolescence. Shorter time since diagnosis predicted greater psychosocial needs, β = -0.24, p = 0.05, and greater distress, β = -0.22, p = 0.05. Greater memory impairment predicted higher need across outcomes, β = -0.36-0.61, p < 0.05. In adjusted analyses for unmet needs, endorsement of cancer affecting education and/or work importantly altered outcomes.

Conclusion: Our results indicate that greater self-reported memory impairment increases childhood cancer survivors' care needs. We additionally suggest that supportive care interventions might best target those reporting work or education interruption due to cancer. Identification of ASCCs who report work/school interruptions may provide a quick screen for health providers to assess possible need for intervention. ASCCs still experience unmet needs long into survivorship.

Keywords: adult survivors of childhood cancer; cognitive impairment; developmental stage; distress; education; unmet needs.