Bullock Danielle R, Vehe Richard K, Zhang Lei, Correll Colleen K
Division of Pediatric Rheumatology, Department of Pediatrics, University of Minnesota, East Bldg Rm M668, 2450 Riverside Ave, Minneapolis, MN, 55454, USA.
Clinical and Translational Sciences Institute, University of Minnesota, 717 Delaware Street SE, Minneapolis, MN, 55414, USA.
Pediatr Rheumatol Online J. 2017 Jul 11;15(1):55. doi: 10.1186/s12969-017-0184-y.
The United States pediatric rheumatology workforce is committed to a mission of providing children access to pediatric rheumatology care. With a limited number and distribution of pediatric rheumatologists, telemedicine has been proposed as one way to meet this mission, yet the adoption of this modality has been slower than expected. The purpose of this study was to explore the parent perspective on barriers to accessing pediatric rheumatology care and to explore the acceptability of telemedicine and other alternative care models.
Over a period of six weeks, all new and return English-speaking parents/guardians of patients visiting a single center were offered an opportunity to complete a survey which assessed barriers to care and interest in alternative models of care. Responses were analyzed using descriptive statistics.
Survey response rate was 72% (159/221). Twenty-eight percent (45/159) traveled more than three hours to the pediatric rheumatology clinic, and 43% (65/152) reported travel as inconvenient. An overwhelming majority of respondents (95%, 144/152) reported a preference for in-person visits over the option of telemedicine. This preference was similar regardless of whether respondents reported travel to the clinic as inconvenient vs convenient (inconvenient 92%, 60/65; convenient 97%, 84/87; p = 0.2881) and despite those reporting travel as inconvenient also reporting greater difficulty with several barriers to care. Those familiar with telemedicine were more likely to report a preference for telemedicine over in-person visits (27%, 3/11 vs 3%, 4/140; p = 0.0087). The option of an outreach clinic was acceptable to a majority (63%, 97/154); however, adult rheumatology and shared-care options were less acceptable (22%, 35/156 and 34%, 53/156 respectively).
Among survey respondents, in-person visits were preferred over the option of telemedicine, even when travel was noted to be inconvenient. Telemedicine familiarity increased its acceptability. Outreach clinics were acceptable to a majority. Ultimately, the parent perspective can shape acceptable ways to address barriers and provide accessible care.
美国儿科风湿病医疗队伍致力于为儿童提供儿科风湿病护理服务。由于儿科风湿病医生数量有限且分布不均，远程医疗被提议作为实现这一使命的一种方式，然而这种模式的采用速度比预期要慢。本研究的目的是探讨家长对获得儿科风湿病护理的障碍的看法，并探讨远程医疗及其他替代护理模式的可接受性。
在六周的时间里，为前往单一中心就诊的所有讲英语的新患者及复诊患者的家长/监护人提供了完成一项调查的机会，该调查评估了护理障碍及对替代护理模式的兴趣。使用描述性统计分析回复。
调查回复率为72%（159/221）。28%（45/159）的人前往儿科风湿病诊所的路程超过三小时，43%（65/152）的人表示出行不便。绝大多数受访者（95%，144/152）表示更喜欢亲自就诊而非远程医疗。无论受访者报告前往诊所的行程是否不便，这种偏好都是相似的（不便 92%，60/65；方便 97%，84/87；p = 0.2881），尽管那些报告出行不便的人也表示在几个护理障碍方面困难更大。熟悉远程医疗的人比亲自就诊的人更有可能表示更喜欢远程医疗（27%，3/11 对 3%，4/140；p = 0.0087）。大多数人（63%，97/154）可以接受外展诊所的选择；然而，成人风湿病和共享护理选择的接受度较低（分别为 22%，35/156 和 34%，53/156）。
在调查受访者中，即使出行不便，他们也更喜欢亲自就诊而非远程医疗。对远程医疗的熟悉程度提高了其可接受性。大多数人可以接受外展诊所。最终，家长的看法可以塑造解决障碍并提供可及护理的可接受方式。
