Gregersen Pernille Axel, Funding Mikkel, Alsner Jan, Olsen Maja H, Overgaard Jens, Urbak Steen F, Staffieri Sandra E, Lou Stina
Department of Experimental Clinical Oncology, Aarhus University Hospital, Aarhus, Denmark.
Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
BMJ Open Ophthalmol. 2021 Sep 12;6(1):e000760. doi: 10.1136/bmjophth-2021-000760. eCollection 2021.
To explore living with heritable retinoblastoma, specifically survivors' perceived role of regular follow-up at a retinoblastoma survivorship clinic.
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.
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.
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.
探讨遗传性视网膜母细胞瘤幸存者的生活状况，特别是幸存者对视网膜母细胞瘤幸存者诊所定期随访作用的认知。
从奥胡斯大学医院视网膜母细胞瘤幸存者诊所招募遗传性视网膜母细胞瘤成年幸存者。10名幸存者参与了个体探索性半结构式访谈。进行了主题数据分析。
确定了与视力、社交生活、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、心理社会支持和遗传知识。与视网膜母细胞瘤相关的身体和心理社会问题影响着幸存者的日常生活；然而，过上正常生活的机会差异很大，大多数人没有受到重大限制。强调需要专门管理和协调员是视网膜母细胞瘤幸存者诊所的主要价值所在。
尽管报告总体生活正常且日常生活活动没有重大限制，但我们的数据证实遗传性视网膜母细胞瘤会影响日常生活的多个方面。独特的是，本研究表明视网膜母细胞瘤幸存者诊所的主要价值在于医疗保健系统中有一名专门的联系人兼协调员，在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且必要的管理和指导。遗传性视网膜母细胞瘤幸存者的需求复杂且广泛，医疗保健系统支持幸存者的具体作用应得到优先考虑、专门化且多学科化。
