Objective To explore living with heritable retinoblastoma, specifically survivors’ perceived role of regular follow-up at a retinoblastoma survivorship clinic. Methods and analysis Adult survivors of heritable retinoblastoma were recruited from the Retinoblastoma Survivorship Clinic, Aarhus University Hospital. Ten survivors participated in individual explorative, semistructured interviews. Thematic data analysis was conducted. Results Five key themes relating to vision, social life, family, second cancer risk and the healthcare system were identified. Subthemes relating to the Retinoblastoma Survivorship Clinic included the retinoblastoma coordinator, cancer risk, psychosocial support and genetic knowledge. The retinoblastoma-related physical and psychosocial issues influenced survivors’ everyday living; however, the opportunity to live a normal life varied considerably, with the majority experiencing no major limitations. The need for specialised management and a coordinator was emphasised to be the main value of the Retinoblastoma Survivorship Clinic. Conclusion Despite reporting an overall normal life and no major limitations in daily living activities, our data confirm that heritable retinoblastoma impacts several aspects of daily living. Uniquely, this study demonstrates that the main value of the Retinoblastoma Survivorship Clinic was a specialised contact person and coordinator in the healthcare system, providing continuous and necessary management and guidance after retinoblastoma treatment, and for all aspects of health related to heritable retinoblastoma. The needs of heritable retinoblastoma survivors are complex and extensive, and the specific role of the healthcare system to support survivorship should be prioritised, specialised and multidisciplinary. Data ara availble upon request.

中文翻译：

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患有遗传性视网膜母细胞瘤以及在视网膜母细胞瘤生存诊所定期随访的感知作用：“这正是我一直想念的”

目的探讨遗传性视网膜母细胞瘤的生活，特别是幸存者在视网膜母细胞瘤生存诊所定期随访的感知作用。方法和分析 从奥胡斯大学医院视网膜母细胞瘤幸存者诊所招募可遗传性视网膜母细胞瘤的成年幸存者。十名幸存者参加了个人探索性的半结构化访谈。进行了专题数据分析。结果 确定了与视力、社会生活、家庭、二次癌症风险和医疗保健系统相关的五个关键主题。与视网膜母细胞瘤幸存者诊所相关的子主题包括视网膜母细胞瘤协调员、癌症风险、社会心理支持和遗传知识。与视网膜母细胞瘤相关的生理和社会心理问题影响了幸存者的日常生活；然而，过正常生活的机会差别很大，大多数人没有受到重大限制。强调需要专门的管理和协调员是视网膜母细胞瘤幸存者诊所的主要价值。结论 尽管报告总体生活正常且日常生活活动没有重大限制，但我们的数据证实可遗传性视网膜母细胞瘤影响日常生活的几个方面。独特的是，这项研究表明，视网膜母细胞瘤幸存者诊所的主要价值是医疗保健系统中的专门联系人和协调员，为视网膜母细胞瘤治疗后以及与遗传性视网膜母细胞瘤相关的所有健康方面提供持续和必要的管理和指导。遗传性视网膜母细胞瘤幸存者的需求复杂而广泛，医疗保健系统在支持生存方面的具体作用应该是优先的、专业的和多学科的。可根据要求提供数据。