Section of Pediatric Hematology Oncology, Department of Pediatrics, Indiana University, Indianapolis, USA.
Center for Pediatric and Adolescent Comparative Effectiveness Research, Indiana University, Indianapolis, USA.
J Telemed Telecare. 2021 Aug;27(7):431-435. doi: 10.1177/1357633X19883558. Epub 2019 Nov 6.
Sickle cell disease (SCD) is the most common inherited haematological disease, with potentially devastating complications. Improvements in therapies have increased the life span of patients with SCD, but this is contingent on receiving timely evidence-based medical care, including regular evaluations with haematologists, disease-specific education and psychosocial care. Our objective was to evaluate the feasibility of utilizing telemedicine for the provision of subspecialty paediatric SCD care in a rural medically underserved area.
This was a cross-sectional, observational, feasibility study. All patients 0-21 years old with SCD seen at Riley Hospital for Children Comprehensive Pediatric Sickle Cell Clinic who lived within 30 miles of the spoke telemedicine facility were eligible for recruitment. The Telehealth Satisfaction Scale (TeSS) was adapted for the SCD population and administered at each visit.
Ten SCD patients, ranging in age from 10 months to 18 years old, initiated telemedicine visits during this timeframe. Some 60% were lost to follow-up or did not attend >50% of scheduled visits prior to beginning telemedicine visits. Following initiation of telemedicine, all Hb SS patients were started and/or maintained on hydroxyurea. Nine out of 10 patients who participated during this timeframe had a 100% follow-up rate. All who participated rated the comfort and ease of using the telehealth system as good or excellent and would do a telemedicine visit again.
This study provides critical information to determine the feasibility and acceptability of a telemedicine intervention to aid in SCD care. To our knowledge, this is the first study to examine the effectiveness of telemedicine to deliver comprehensive paediatric SCD care. Future research with a larger sample size is needed to confirm findings of our study, including expansion of telemedicine sites to include more urban areas.
镰状细胞病（SCD）是最常见的遗传性血液疾病，可能会导致严重的并发症。治疗方法的改进提高了 SCD 患者的预期寿命，但这取决于能否及时获得循证医学护理，包括定期接受血液学家评估、疾病特异性教育和社会心理护理。我们的目标是评估在农村医疗资源不足地区利用远程医疗提供儿科 SCD 专科护理的可行性。
这是一项横断面、观察性的可行性研究。所有在 Riley 儿童医院综合儿科镰状细胞诊所就诊、居住在距离远程医疗设施 30 英里范围内的 0-21 岁 SCD 患者都有资格参加。Telehealth Satisfaction Scale（TeSS）经过改编，适用于 SCD 人群，并在每次就诊时进行评估。
在这段时间内，共有 10 名 SCD 患者（年龄从 10 个月到 18 岁不等）开始远程医疗就诊。大约 60%的患者在开始远程医疗就诊前失去了随访或未能参加超过 50%的预约就诊。在开始远程医疗就诊后，所有 Hb SS 患者均开始使用或维持使用羟基脲治疗。在这段时间内参与研究的 9/10 名患者的随访率达到 100%。所有参与者均表示使用远程医疗系统感到舒适和方便，并且愿意再次进行远程医疗就诊。
这项研究提供了重要信息，以确定远程医疗干预措施在 SCD 护理中的可行性和可接受性。据我们所知，这是第一项研究远程医疗在提供全面儿科 SCD 护理方面的有效性。需要进行更大样本量的未来研究来证实我们研究的结果，包括扩大远程医疗站点以包括更多的城市地区。
