Telemedicine and other care models in pediatric rheumatology: an exploratory study of parents’ perceptions of barriers to care and care preferences

Abstract

BackgroundThe 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.MethodsOver 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.ResultsSurvey 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).ConclusionAmong 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12969-017-0184-y) contains supplementary material, which is available to authorized users.

Telemedicine Healthcare Service Adoption Barriers in Rural Bangladesh

“…No conceptual or theoretical frameworks concerning the relationships between telemedicine barriers and adoption were found. Robust prior studies in telemedicine, e-Health, telehealth, and m-Health (Alaboudi et al, 2016;Bigna, Noubiap, Plottel, Kouanfack, & Koulla-Shiro, 2014;Boonstra & Broekhuis, 2010;Bullock et al, 2017;Cajita, Hodgson, Lam, Yoo, & Han, 2018;De Bustos, Moulin, & Audebert, 2009;Faber, van Geenhuizen, & de Reuver, 2017;Freed et al, 2018;Gravel, Légaré, & Graham, 2006;Jang-Jaccard et al, 2014;Johnson, 2001;Leaming, 2007;LeRouge & Garfield, 2013;Lin, Lin, & Roan, 2012;Lohmann, Muula, Houlfort, & De Allegri, 2018;Modi, Portney, Hollenbeck, & Ellimoottil, 2018;Moffatt & Eley, 2011;Ramtohul, 2015;Rogove, McArthur, Demaerschalk, & Vespa, 2012;Scott Kruse et al, 2018;Scott & Mars, 2013;Van Dyk, 2014;Whitten, Holtz, Meyer, & Nazione, 2009) were used to develop and test the hypotheses regarded as mutually exclusive and exhaustive when considered from a model parsimony perspective. These seven broad categories of barriers are encapsulated in the study's conceptual model (see Figure 1).…”

A Mixed-methods Approach to Evaluating the Usability of Telemedicine Communications

“…Like other HIT, usability is a critical determinant of telemedicine acceptance and use by end target-users. Usability integrates multidimensional aspects of the user experience, including a potential user's awareness of the telemedicine service [15,16], a user's subjective perception of the quality of the healthcare service [17][18][19], social aspects of the telemedicine platform [20,21], suitableness for the context of use [18,22], as well as features and functions of the user interface [23,24]. A major means of healthcare providers' promotional and marketing efforts is done through their consumer-oriented website [25].…”

Telemedicine in pediatric rheumatology: this is the time for the community to embrace a new way of clinical practice

“…Virtual care models with remote clinics and video visits (e-visits or telemedicine) have become widespread practice overnight. The adoption of telemedicine in pediatric rheumatology has been limited historically [ 1 ] and the importance of physical examination cited as a barrier [ 2 ]. Furthermore, regulatory complexity, decreased reimbursement rates and technical limitations have hampered robust development of telemedicine.…”

“…family doctor, pediatrician, physiotherapist or nurse) or training parents to facilitate the examination. Families express preference for in-person visits, even when travel is inconvenient [ 2 ] Challenges in developing rapport especially with new patients Complex or medically serious visits need in person assessment [ 14 ] Participation in research studies which historically have required in person evaluations (might require creative solutions) Shortfalls in network, hardware and software capabilities, either on the provider or patient end can cause inability/ difficulty with connecting, or poor video resolution Equipment and training of providers is often costly and time-consuming, with decreased provider acceptance [ 15 ]. Equity issues: Limited access for some families with poor or no internet access or limited data plans, low bandwidth capacity, limited language proficiency, health literacy and technological literacy [ 15 ] Lack of or inadequate insurance coverage Geographic boundaries may be bound to different telehealth rules based on government and hospital restrictions Internet and software platforms may not have security to ensure privacy of video or healthcare data [ 15 ].…”