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

Published online by Cambridge University Press:  14 June 2023

Jessica Tan Open the ORCID record for Jessica Tan [Opens in a new window] ,
Jordana K. McLoone ,
Claire E. Wakefield ,
Natasha Nassar ,
Richard J. Cohn  and
Christina Signorelli Open the ORCID record for Christina Signorelli [Opens in a new window]
Jessica Tan
Affiliation:
Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
Jordana K. McLoone
Affiliation:
Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
Claire E. Wakefield
Affiliation:
Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
Natasha Nassar
Affiliation:
Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia Children’s Hospital at Westmead Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia
Richard J. Cohn
Affiliation:
Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
Christina Signorelli*
Affiliation:
Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, Randwick Clinical Campus, UNSW Sydney, Sydney, NSW, Australia
*
Corresponding author: Christina Signorelli; Email: c.signorelli@unsw.edu.au
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Abstract

Background

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.

Methods

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.

Results

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%, χ2 = 13, p < 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.

Conclusion

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.

Keywords

Childhood cancerSurvivorshipNeuroblastomaLate effectsHealth-care useQuality of life
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 2 , April 2024 , pp. 296 - 305
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Copyright
© The Author(s), 2023. Published by Cambridge University Press.

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