Institute of Higher Education and Nursing Research, University of Lausanne, CHUV, Rte de la Corniche 10, Lausanne 1011, Switzerland.
BMC Pediatr. 2014 Jun 18;14:151. doi: 10.1186/1471-2431-14-151.
Pediatric rheumatic diseases have a significant impact on children's quality of life and family functioning. Disease control and management of the symptoms are important to minimize disability and pain. Specialist clinical nurses play a key role in supporting medical teams, recognizing poor disease control and the need for treatment changes, providing a resource to patients on treatment options and access to additional support and advice, and identifying best practices to achieve optimal outcomes for patients and their families. This highlights the importance of investigating follow-up telenursing (TN) consultations with experienced, specialist clinical nurses in rheumatology to provide this support to children and their families.
METHODS/DESIGN: This randomized crossover, experimental longitudinal study will compare the effects of standard care against a novel telenursing consultation on children's and family outcomes. It will examine children below 16 years old, recently diagnosed with inflammatory rheumatic diseases, who attend the pediatric rheumatology outpatient clinic of a tertiary referral hospital in western Switzerland, and one of their parents. The telenursing consultation, at least once a month, by a qualified, experienced, specialist nurse in pediatric rheumatology will consist of providing affective support, health information, and aid to decision-making. Cox's Interaction Model of Client Health Behavior serves as the theoretical framework for this study. The primary outcome measure is satisfaction and this will be assessed using mixed methods (quantitative and qualitative data). Secondary outcome measures include disease activity, quality of life, adherence to treatment, use of the telenursing service, and cost. We plan to enroll 56 children.
The telenursing consultation is designed to support parents and children/adolescents during the course of the disease with regular follow-up. This project is novel because it is based on a theoretical standardized intervention, yet it allows for individualized care. We expect this trial to confirm the importance of support by a clinical specialist nurse in improving outcomes for children and adolescents with inflammatory rheumatisms.
ClinicalTrial.gov identifier: NCT01511341 (December 1st, 2012).
儿科风湿性疾病对儿童的生活质量和家庭功能有重大影响。控制疾病和管理症状对于最小化残疾和疼痛至关重要。专科临床护士在支持医疗团队方面发挥着关键作用，识别出疾病控制不佳和需要治疗改变的情况，为患者提供治疗选择的资源，并提供获得额外支持和建议的途径，并确定实现患者及其家庭最佳结果的最佳实践。这突显了调查接受经验丰富的专科临床护士进行后续远程护理（TN）咨询以向儿童及其家庭提供这种支持的重要性。
方法/设计：这是一项随机交叉、实验性纵向研究，将比较标准护理与新型 TN 咨询对儿童和家庭结果的影响。研究对象为在瑞士西部一家三级转诊医院的儿科风湿病门诊就诊的、年龄在 16 岁以下、最近被诊断为炎症性风湿性疾病的儿童及其父母之一。由合格、经验丰富的儿科风湿病专科护士提供的 TN 咨询至少每月一次，包括提供情感支持、健康信息和决策辅助。考克斯客户健康行为交互模型为这项研究提供了理论框架。主要结局指标是满意度，将使用混合方法（定量和定性数据）进行评估。次要结局指标包括疾病活动度、生活质量、治疗依从性、TN 服务使用情况和成本。我们计划招募 56 名儿童。
TN 咨询旨在通过定期随访为疾病过程中的父母和儿童/青少年提供支持。该项目具有创新性，因为它基于标准化的干预理论，但同时允许个性化护理。我们预计该试验将证实临床专家护士的支持在改善炎症性风湿病儿童和青少年结局方面的重要性。
ClinicalTrials.gov 标识符：NCT01511341（2012 年 12 月 1 日）。
