Department of Child Health Nursing, BLDEA's Shri B.M. Patil Institute of Nursing Sciences, Vijayapur, India.
SVIMS College of Nursing, Tirupati, India.
J Pediatr Hematol Oncol Nurs. 2024 May-Jun;41(3):199-211. doi: 10.1177/27527530231214542. Epub 2024 Apr 22.
Iron chelation, blood transfusions, and complication management are typical hospital requirements for children with beta-thalassemia major. This affects their health-related quality of life (HRQoL). The purpose of this study was to evaluate how the Supportive and Coping strategies, Ongoing Assessment, Prevention of Complications, and Empowerment (SCOPE) Program impacted the HRQoL and overall health of children with thalassemia. The study employed a quasi-experimental pretest-posttest control group with a sequential follow-up design. A nonprobability purposive sampling technique was used to include 80 children with beta-thalassemia major in the sample, ranging in age from 6 to 18. Data were gathered using a Demographic Profile, PedsQL Version 4.0, and a Clinical Profile. The children in the intervention group received the SCOPE Program over the course of 6 months. The data collection included a pretest and a posttest with four follow-up evaluations. During the pretest, children with thalassemia had a very low HRQoL. However, the final assessment after the intervention showed a significant difference in the mean scores between the two groups in the areas of physical functioning ( = .001), emotional functioning ( = .0001), social functioning ( = .001), and school functioning ( = .001). Growth indicators also demonstrated a notable improvement in the intervention group of children. The SCOPE Program may be a thorough and efficient intervention for enhancing the general health of children with thalassemia. It can be used as a cooperative, well-organized, family-focused care strategy. Further study with a larger sample size is suggested.
铁螯合、输血和并发症管理是重型β地中海贫血儿童的典型医院需求。这会影响他们的健康相关生活质量（HRQoL）。本研究旨在评估支持和应对策略、持续评估、预防并发症和赋权（SCOPE）计划如何影响地中海贫血儿童的 HRQoL 和整体健康。该研究采用了准实验前后测试对照组的顺序随访设计。采用非概率目的抽样技术，选取年龄在 6 至 18 岁之间的 80 名重型β地中海贫血儿童作为样本。使用人口统计学概况、儿科生活质量量表 4.0 版本和临床概况收集数据。干预组的儿童在 6 个月的时间内接受 SCOPE 计划。数据收集包括前测和后测，以及四次随访评估。在前测中，地中海贫血儿童的 HRQoL 非常低。然而，干预后的最终评估显示，两组在身体功能（ = .001）、情绪功能（ = .0001）、社会功能（ = .001）和学校功能（ = .001）方面的平均得分存在显著差异。生长指标也显示干预组儿童有显著改善。SCOPE 计划可能是一种全面有效的干预措施，可提高地中海贫血儿童的整体健康水平。它可以作为一种合作、组织良好、以家庭为中心的护理策略。建议进一步进行更大样本量的研究。
