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Defining supportive care needs for retinoblastoma: A Pilot Study - 5657

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Author’s Name(s): Natalie Chen, Kaitlyn Flegg, Ivana Ristevski, Roxanne Noronha, Efy Zouridaki, Mawj Al Hammadi, Katherine Paton, Helen Dimaras

Author’s Disclosure Block: Natalie Chen, none; Kaitlyn Flegg, none; Ivana Ristevski, none; Roxanne Noronha, none; Efy Zouridaki, none; Mawj Al Hammadi, none; Katherine Paton, none; Helen Dimaras, none 

Abstract Body
Purpose: Survivors and caregivers affected by retinoblastoma (RB) experience unique stressors related to vision loss, eye appearance after surgery/radiation, and secondary cancers. Enhancing psychosocial support has been a priority for the RB community, but the supportive care needs (SCNs) of survivors and caregivers remain largely unknown. This study aims to identify the proportion and predictors of unmet SCNs amongst RB survivors and caregivers. Study Design: Cross-sectional quantitative study, with approval from the SickKids Research Ethics Board. Methods: Participants included RB survivors ≥16 years and caregivers of children with RB. Eligible participants were invited to respond to an electronic survey that (i) collected demographic and clinical information and (ii) assessed SCNs and distress using validated questionnaires. Descriptive statistics were generated for survivors and caregivers; caregiver-survivors were included in both groups to reflect dual roles. Univariate analysis was conducted to identify associations between distress levels, demographic or clinical variables with the degree of unmet SCNs. Results: There were 93 participants (29 survivors, 59 caregivers, 5 caregiver-survivors). The proportion of participants with ≥1 unmet SCN was 79% (survivors) and 95% (caregivers). The most common SCN was related to uncertainty about the future (survivors, unmet among 88%) and knowing whom to direct questions to (caregivers, unmet among 33%). Predictors that were found to have a significant association with degree of unmet SCNs in both survivors and caregivers included age and distress levels. Older survivors (p=0.020) and caregivers (p=0.040) had a smaller degree of unmet SCNs, while survivors (p=0.047) and caregivers (p=0.0039) with clinically significant distress experienced greater unmet SCNs. Gender was found to be a significant predictor in survivors only, with women (p=0.030) experiencing a greater degree of unmet SCNs. Time since diagnosis was a significant predictor in caregivers only, with those with a longer time since diagnosis (p=0.011) possessing a smaller degree of unmet SCNs. No other significant demographic or clinical predictors (including vision satisfaction/rating, disease laterality, family history of RB, or enucleation) were determined. Conclusions: Most RB survivors and caregivers reported ≥1 unmet SCN. Predictors including age and time since diagnosis were determined to have a negative association with the degree of unmet SCN, while distress levels and identifying as a woman had a positive association. It is pertinent for clinical and research teams to consider how these predictors may impact the degree of unmet SCNs that survivors and caregivers can have when providing tailored support to members of the RB community.

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