Department of Adolescent Medicine, The Children's Hospital at Westmead, Locked Bag 4001, Westmead, Sydney, NSW, 2145, Australia.
Discipline of Child & Adolescent Health, Sydney Medical School, The University of Sydney, Sydney, Australia.
Trials. 2022 Oct 5;23(1):850. doi: 10.1186/s13063-022-06740-9.
Self-management support is increasingly viewed as an integral part of chronic condition management in adolescence. It is well recognized that markers of chronic illness control deteriorate during adolescence. Due to the increasing prevalence of long-term chronic health conditions in childhood and improved survival rates of previously life-limiting conditions in children and adolescents, significant numbers of adolescents are having to manage their chronic condition effectively as they transition to adult health care. Therapy adherence has been identified as a major challenge for young people living with a chronic condition such as cystic fibrosis, diabetes, or asthma requiring long-term pharmacological therapy and/or lifestyle modifications. Most systematic reviews on self-management interventions address adult populations. Very few intervention studies are directed at adolescents with a chronic condition who are transitioning to adult health services. This protocol describes a prospective randomized controlled trial of a standardized self-management intervention program delivered to adolescents aged 15-18 years prior to their transfer to adult care. This study has been designed to provide evidence regarding self-management programs for adolescents and is the first study to use the Flinders Program with this important, under-researched age group.
A randomized controlled trial is used to investigate the effectiveness of a modified adolescent-friendly version of an adult self-management program. This program is directed at improving self-management in an adolescent cohort 15-18 years of age with a chronic condition being treated in a specialist pediatric hospital. Participants will be randomized to either usual care or the modified Flinders Program plus usual care. Data collection will include measures of specific illness control, unscheduled hospital admissions, and questionnaires to record self-management competencies, quality of life, self-efficacy, and outcome measures specific to the chronic condition at baseline, 3 months, 6 months, and 12 months after delivery.
This study will provide a better understanding of the elements required for effective self-management programs in adolescents with a chronic condition and address some important knowledge gaps in current literature. The study will be carried out in collaboration with the Discipline of Behavioural Health at Flinders University, Adelaide, Australia, in order to inform the development of an adolescent version of the successful and validated Flinders Program™.
Australian and New Zealand Clinical Trials Registry (ACTRN12621000390886). Registered on April 8, 2021.
自我管理支持越来越被视为青少年慢性病管理的一个组成部分。众所周知，慢性病的控制指标在青少年时期会恶化。由于儿童期长期慢性健康状况的患病率不断增加，以及儿童和青少年以前危及生命的疾病的存活率提高，因此，许多青少年在过渡到成人保健时必须有效地管理自己的慢性病。治疗依从性已被确定为患有囊性纤维化、糖尿病或哮喘等慢性病的年轻人面临的主要挑战，这些疾病需要长期药物治疗和/或生活方式改变。大多数关于自我管理干预的系统评价都针对成年人群。只有很少的干预研究针对正在过渡到成人保健服务的患有慢性病的青少年。本方案描述了一项针对在转至成人护理之前年龄为 15-18 岁的青少年的标准化自我管理干预方案的前瞻性随机对照试验。这项研究旨在为青少年的自我管理计划提供证据，并且是第一个使用弗林德斯计划对这个重要但研究不足的年龄组进行研究的研究。
采用随机对照试验来研究改良的青少年友好型成人自我管理计划的有效性。该方案旨在提高在一家专门的儿科医院接受治疗的 15-18 岁患有慢性病的青少年群体的自我管理能力。参与者将被随机分配到常规护理组或改良的弗林德斯计划加常规护理组。数据收集将包括特定疾病控制、非计划性住院和调查问卷，以记录自我管理能力、生活质量、自我效能和与慢性病相关的特定结局测量，在基线、3 个月、6 个月和 12 个月后进行。
这项研究将更好地了解在慢性病青少年中实施有效自我管理计划所需的要素，并解决当前文献中的一些重要知识空白。该研究将与澳大利亚阿德莱德弗林德斯大学行为健康学科合作进行，以便为成功且经过验证的弗林德斯计划™的青少年版本的开发提供信息。
澳大利亚和新西兰临床试验注册（ACTRN12621000390886）。于 2021 年 4 月 8 日注册。
