Neuroblastoma survivors' self-reported late effects, quality of life, health-care use, and risk perceptions

• Published in: Palliative & supportive care Vol. 22; no. 2; p. 296
• Main Authors: Tan, Jessica, McLoone, Jordana K, Wakefield, Claire E, Nassar, Natasha, Cohn, Richard J, Signorelli, Christina
• Format: Journal Article
• Language: English
• Published: England 01.04.2024
• Subjects: Adolescent; Adult; Cancer Survivors; Female; Humans; Male; Neoplasms - therapy; Neuroblastoma - complications; Quality of Life; Self Report; Survivors; Young Adult; Late effects; Neuroblastoma; Survivorship; Health-care use; Childhood cancer; Quality of life
• ISSN: 1478-9523
• DOI: 10.1017/S1478951523000615

Survivors of childhood neuroblastoma are at risk of multiple treatment-related health problems (late effects), impacting their quality of life. While late effects and quality of life among Australia and New Zealand (ANZ) childhood cancer survivors have been reported, the outcomes of neuroblastoma survivors specifically have not been reported, limiting critical information to inform treatment and care. Young neuroblastoma survivors or their parents (as proxy for survivors <16 years) were invited to complete a survey and optional telephone interview. Survivors' late effects, risk perceptions, health-care use, and health-related quality of life were surveyed and analyzed using descriptive statistics and linear regression analyses. In-depth interviews explored participants' experiences, knowledge, and perception of late effects and information needs. Thematic content analysis was used to summarize the data. Thirty-nine neuroblastoma survivors or parents completed questionnaires (median age = 16 years, 39% male), with 13 also completing interviews. Thirty-two participants (82%) reported experiencing at least 1 late effect, most commonly dental problems (56%), vision/hearing problems (47%), and fatigue (44%). Participants reported high overall quality of life (index = 0.9, range = 0.2-1.0); however, more participants experienced anxiety/depression compared to the population norm (50% met criteria versus 25%,  = 13,  < 0.001). Approximately half of participants (53%) believed they were at risk of developing further late effects. Qualitatively, participants reported knowledge gaps in understanding their risk of developing late effects. Many neuroblastoma survivors appear to experience late effects, anxiety/depression and have unmet cancer-related information needs. This study highlights important areas for intervention to reduce the impact of neuroblastoma and its treatment in childhood and young adulthood.