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本文引用的文献

1
Hospitalizations among children with sickle cell disease enrolled in the Kumasi Sickle Cell Pan African Consortium (SPARCo) database: A cross sectional study.纳入库马西镰状细胞病泛非联盟(SPARCo)数据库的镰状细胞病患儿的住院情况:一项横断面研究。
Health Sci Rep. 2023 Sep 3;6(9):e1534. doi: 10.1002/hsr2.1534. eCollection 2023 Sep.
2
Transition in Sickle Cell Disease (SCD): A German Consensus Recommendation.镰状细胞病(SCD)的转变:德国共识推荐
J Pers Med. 2022 Jul 17;12(7):1156. doi: 10.3390/jpm12071156.
3
Establishing a Sickle Cell Disease Registry in Africa: Experience From the Sickle Pan-African Research Consortium, Kumasi-Ghana.在非洲建立镰状细胞病登记处:来自加纳库马西镰状细胞病泛非研究联盟的经验
Front Genet. 2022 Feb 24;13:802355. doi: 10.3389/fgene.2022.802355. eCollection 2022.
4
Self-care: A concept analysis.自我护理:一项概念分析。
Int J Nurs Sci. 2021 Sep 5;8(4):418-425. doi: 10.1016/j.ijnss.2021.08.007. eCollection 2021 Oct 10.
5
Quality of life of adolescents living with sickle cell anaemia in Ondo State, Nigeria.尼日利亚翁多州镰状细胞贫血青少年的生活质量
Pan Afr Med J. 2020 Apr 15;35:124. doi: 10.11604/pamj.2020.35.124.19082. eCollection 2020.
6
Paediatric to adult transition care for patients with sickle cell disease: a global perspective.镰状细胞病患者从儿科到成人的过渡护理:全球视角
Lancet Haematol. 2020 Apr;7(4):e329-e341. doi: 10.1016/S2352-3026(20)30036-3.
7
Sickle cell disease in Africa: an urgent need for longitudinal cohort studies.非洲的镰状细胞病:迫切需要进行纵向队列研究。
Lancet Glob Health. 2019 Oct;7(10):e1310-e1311. doi: 10.1016/S2214-109X(19)30364-X. Epub 2019 Aug 23.
8
A Medication Adherence App for Children With Sickle Cell Disease: Qualitative Study.用于镰状细胞病儿童的药物依从性应用程序:定性研究。
JMIR Mhealth Uhealth. 2019 Jun 18;7(6):e8130. doi: 10.2196/mhealth.8130.
9
Burden of Sickle Cell Disease in Ghana: The Korle-Bu Experience.加纳镰状细胞病负担:科尔勒-布医院的经验
Adv Hematol. 2018 Dec 2;2018:6161270. doi: 10.1155/2018/6161270. eCollection 2018.
10
The global burden of sickle cell disease in children under five years of age: a systematic review and meta-analysis.五岁以下儿童镰状细胞病的全球负担:系统评价和荟萃分析。
J Glob Health. 2018 Dec;8(2):021103. doi: 10.7189/jogh.08.021103.

加纳一家教学医院中儿科镰状细胞病患者向成人诊所过渡的准备情况

Transition Readiness of Pediatric Sickle Cell Patients to Adult Clinic in a Teaching Hospital, Ghana.

作者信息

Nartey Aaron Kwasi, Paintsil Vivian, Nyanor Isaac, Oppong-Mensah Yaa Gyamfua, Amuzu Evans Xorse, Ahmed Eunice Agyeman, Abubakar Suraj Yawnumah, Osei-Akoto Alex

机构信息

Kumasi Center for Sickle Cell Disease (KCSCD), Komfo Anokye Teaching Hospital, Kumasi, Ghana.

Sickle Cell Unit, Komfo Anokye Teaching Hospital, Kumasi, Ghana.

出版信息

Adv Hematol. 2025 Jul 10;2025:2843974. doi: 10.1155/ah/2843974. eCollection 2025.

DOI:10.1155/ah/2843974
PMID:40688097
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12271718/
Abstract

Successfully navigating the transition process has received little attention, especially in sub-Saharan Africa. This study assessed the transition readiness of pediatric sickle cell disease (SCD) patients in the Komfo Anokye Teaching Hospital (KATH), Kumasi-Ghana. A hospital-based cross-sectional study was conducted using a purposive sampling technique to recruit adolescents who were scheduled to be transitioned from the Pediatric to the Adult SCD Clinic at KATH. Two transition assessment tools were adopted and modified to suit our local setting. Majority of the patients (90%) scored above median mark for the items under the transition self-care importance and confidence and over 50% for most of the items under the disease knowledge and appointment keeping domains. The internal consistencies of the items were over 70% for all the three domains: disease knowledge, medication management, and appointment keeping. In multivariable regression models, older age, female gender, and higher education were associated with higher scores in all the three domains. Also, the sickle cell disease-SS (SCD-SS) status was associated with higher scores in disease knowledge and appointment keeping. Patients staying with both parents were associated with higher scores for the domains but only appointment keeping was statistically significant. Staying with other relations was associated with a lower score for appointment keeping and had significant association for medication management. The study revealed a high transition readiness among pediatric patients. In general, the patients had high confidence transitioning to an adult clinic and the ability to manage their own healthcare. However, patients were hesitant speaking about their SCD status. Staying with both parents was significantly associated with higher scores for appointment keeping. Also, staying with other relations significantly reduced the scores for medication management. We recommend setting up of an adolescent sickle cell support group to help reduce stigmatization and improve health outcomes.

摘要

成功应对过渡过程很少受到关注,尤其是在撒哈拉以南非洲地区。本研究评估了加纳库马西Komfo Anokye教学医院(KATH)儿科镰状细胞病(SCD)患者的过渡准备情况。采用目的抽样技术进行了一项基于医院的横断面研究,以招募计划从KATH的儿科SCD诊所过渡到成人SCD诊所的青少年。采用并修改了两种过渡评估工具以适用于我们当地的情况。大多数患者(90%)在过渡自我护理重要性和信心项下的项目得分高于中位数,在疾病知识和预约遵守领域的大多数项目得分超过50%。疾病知识、药物管理和预约遵守这三个领域所有项目的内部一致性均超过70%。在多变量回归模型中,年龄较大、女性和高等教育与这三个领域的较高得分相关。此外,镰状细胞病-SS(SCD-SS)状态与疾病知识和预约遵守方面的较高得分相关。与父母双方同住的患者在这些领域得分较高,但只有预约遵守具有统计学意义。与其他亲属同住与预约遵守得分较低相关,与药物管理有显著关联。该研究显示儿科患者的过渡准备情况良好。总体而言,患者对过渡到成人诊所具有很高的信心,并且有能力管理自己的医疗保健。然而,患者在谈论自己的SCD状态时犹豫不决。与父母双方同住与预约遵守得分较高显著相关。此外,与其他亲属同住显著降低了药物管理得分。我们建议设立一个青少年镰状细胞支持小组,以帮助减少污名化并改善健康结果。