School of Health and Welfare, Halmstad University, Halmstad, Sweden.
Department of Oncology, Sahlgrenska University Hospital and Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
BMJ Open. 2022 Jan 7;12(1):e048325. doi: 10.1136/bmjopen-2020-048325.
Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship.
This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience.
The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.
急性淋巴细胞白血病（ALL）是儿童中最常见的癌症类型。尽管治疗方法有所改进，生存得到了显著改善，晚期效应和晚期死亡率风险降低，但幸存者的健康相关生活质量（HRQOL）可能会受到影响。为了在临床实践中引入新的干预措施，以支持积极的 HRQOL 结果，我们需要更多地了解这一人群的 HRQOL 是如何构建和受到刺激的。本研究旨在从长期角度探讨儿童 ALL 治疗后成年人的 HRQOL 如何受到影响，以及可能影响这种关系的因素。
该年轻成人 ALL 幸存者队列允许在全国范围内调查影响 HRQOL 结果的因素。从瑞典儿童癌症质量登记处获得合格参与者。数据收集包括对 2012 年收集的数据进行随访（n=224）和招募新的合格参与者加入队列（n=601）。该队列将涵盖 1985 年至 2007 年间诊断为儿童 ALL 的年龄在 0 至 15 岁之间的幸存者。数据将使用经过验证的多维自我管理工具收集，旨在测量 HRQOL（SF-36）、社会支持、心理韧性和适应力。
该研究将按照瑞典伦理审查局获得的伦理许可进行（编号 2019-05181）。研究结果的传播将通过研究论文和报告进行，报告对象为国家患者组织和该目标群体的国家咨询护士网络，以及瑞典国家儿童癌症长期护理计划工作组。结果还将在哥德堡 Sahlgrenska 医院的成人儿童癌症幸存者随访诊所得到实际应用。
