Sunday, November 8, 2026

2:15 PM - 2:30 PM

Ballroom 1 and 2

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Overview

Amanda Moore

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Details

Purpose: Retinoblastoma is the most common primary intraocular malignancy in children under five years of age, with approximately 25 new patients diagnosed annually across Australia and Aotearoa New Zealand. Enucleation remains an important treatment for advanced disease, but may result in lifelong psychosocial, physical, and functional impacts. This systematic review aims to synthesise the evidence on the lived experience of enucleation for retinoblastoma on both individuals and their families. Methods: A systematic search of CINAHL, Embase, MedLine, and PsycINFO was conducted on 1 November 2025. Two independent reviewers screened titles and abstracts. Full texts were then sourced and further exclusions were made. Data extraction and quality appraisal then followed, with one further text included via citation chaining. Extraction domains included psychosocial, physical, social, educational, and financial impacts, along with coping strategies. Owing to the heterogenous nature of the data found, findings were synthesised thematically, without meta-analysis. Results: Of 3,486 records identified, 22 studies met the inclusion criteria. No eligible studies originated from Australia or Aotearoa New Zealand. Preliminary synthesis identified reduced self-esteem, bullying, altered appearance-related perceptions, and parental distress as common psychosocial impacts. Physical challenges included pain, prosthesis-related issues, and reduced wellbeing. Financial and employment impacts were rarely reported, few studies considered residual visual function, and evidence for effective support strategies was limited. Conclusions: The lived experience of enucleation for retinoblastoma remains underrepresented. Longitudinal qualitative research is scarce, particularly in Australian populations. Further research is needed to inform evidence-based, patient-centred care for children, survivors, and their families.

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Speaker