Falling through the cracks. A thematic evaluation of unmet needs of adult survivors of childhood cancers

Abstract

Objective: The population of adult survivors of childhood cancers (ASCCs) is growing, resulting in unique long-term challenges. This study explored experiences of perceived unmet ASCC survivorship needs.

Methods: We invited ASCCs to complete surveys sent through the cancer registry. Four open-ended questions allowed participants to write in comments. We analyzed responses to these open-ended questions thematically, employing a process of constant comparison.

Results: Our sample included 94 ASCCs who completed open-ended questions (61 female; aged 20-78 years, mean age = 34.47, SD = 11.84, mean = 23.27 years post diagnosis). Identified themes included (1) overlooked experiences of distress; (2) lack of counseling: system, patient, and family barriers; (3) difficulty negotiating future life milestones exacerbated by lack of knowledge; and (4) dissatisfaction with service provision: past and present. Prevalent issues identified by participants included lack of supportive care to address needs, distress due to missed developmental milestones as a result of cancer, lack of knowledge about late-term and long-term effects of cancer treatment, and concern over absence of organized long-term follow-up.

Conclusions: Adult survivors of childhood cancers continue to experience unmet needs during their cancer diagnosis, treatment, and long into survivorship due to the treatment for cancer and ongoing side effects. Solutions could focus on addressing the needs of survivors to bridge system gaps and barriers. Specifically, there is a need to improve psychological interventions and transitions from pediatric to adult-care facilities.

Keywords: cancer; psychooncology; qualitative; surveys; survivor; unmet needs, oncology, adult survivors of childhood cancer, pediatric oncology, late effects.