Abstract
Background:
Children often have difficulty accessing subspecialty care, and telemedicine may improve access to subspecialty care, but information is lacking on how best to implement telemedicine programs to maximize acceptance and, ultimately, maximize impact for patients and their families.
Methods and Materials:
To understand how subspecialty telemedicine is perceived and to identify design elements with the potential to improve telemedicine uptake and impact, we conducted and analyzed semi-structured interviews with 21 informants, including parents and caregivers of children with subspecialty care needs and adolescent and young adult patients with subspecialty care needs.
Results:
Although informants saw the potential value of using telemedicine to replace in-person subspecialty visits, they were more enthusiastic about using telemedicine to complement rather than replace in-person visits. For example, they described the potential to use telemedicine to facilitate previsit triage encounters to assess whether the patient was being scheduled with the correct subspecialist and with the appropriate level of urgency. They also felt that telemedicine would be useful for communication with subspecialists after scheduled in-person visits for follow-up questions, care coordination, and to discuss changes in health status. Informants felt that it was important for telemedicine programs to have transparent and reliable scheduling, same-day scheduling options, continuity of care with trusted providers, clear guidelines on when to use telemedicine, and preservation of parent choice regarding method of care delivery.
Conclusions:
Parents and patients articulated preferences regarding pediatric subspecialty telemedicine in this qualitative, hypothesis-generating study. Understanding and responding to patient and caregiver perceptions and preferences will be crucial to ensure that telemedicine drives true innovation in care delivery rather than simply recapitulating prior models of care.
Introduction
Nearly one quarter of U.S. children in need of subspecialty care report difficulty accessing that care. 1 Numerous barriers contribute to this problem, including inadequate supply and uneven geographic distribution of pediatric subspecialists, 2 –5 and inadequate communication between subspecialists and referring providers. 6 –9 Telemedicine, the remote provision of medical care using real-time audio-visual consultation, is a potentially valuable strategy to address these barriers. Several studies demonstrate that telemedicine is as safe and efficacious as in-person care and can improve diagnosis and outcomes. 10 –15 In turn, there is growing acceptance of telemedicine among healthcare professionals, with the American Academy of Pediatrics recently recognizing telemedicine as an important strategy for increasing access to pediatric subspecialty care. 16
Despite this enthusiasm, experts raise concern that the expansion of some forms of telemedicine carries risks of unintended consequences, including the potential to disrupt continuity of care, depersonalize the patient-clinician relationship, and create unnecessary over-use of healthcare resources. 17,18 Although many of these unintended consequences might be mitigated by specific implementation strategies, these strategies are not well elucidated by the current literature. More broadly, much of the literature on telemedicine focuses on feasibility and acceptability of individual visits, rather than telemedicine's impact on longitudinal patient-centered measures (including process measures, intended outcomes, and unintended consequences). 18 To move toward assessing the relationship between telemedicine and patient-centered outcomes, it is first necessary to understand how patients view telemedicine and what they hope to gain through telemedicine-enabled healthcare. This patient- and family-centered approach 19 –21 is necessary to ensure that pediatric subspecialty telemedicine programs maximize potential benefits while minimizing potential harms from the perspective of the end users.
Thus, to better understand patient and family preferences for subspecialty telemedicine and to identify relevant patient-centered outcomes for future work, we performed a stakeholder-informed qualitative analysis of semi-structured interviews. Building off prior conceptual models of subspecialty care, 6,22 –24 this qualitative, hypothesis-generating study examined patient and family perspectives on the potential impact of telemedicine on care processes and outcomes, and we identified design elements and contextual factors impacting perceived usefulness.
Materials and Methods
Study Design
We performed a qualitative study of patient and family perceptions of telemedicine by using semi-structured interviews.
Stakeholder Advisory Group
Before initiating our research, we convened a six-member stakeholder advisory group, 25,26 with the goal of increasing relevance and reliability of results by incorporating a range of perspectives into study design and result interpretation. This group had a balanced representation of patient representatives (patients and parents) and system representatives (payers, providers, and administrators), and it included representatives who self-reported high and low access to pediatric subspecialists. Through in-person meetings and interval e-mails, the group revised the interview guide, advised on participant recruitment, refined the preliminary codebook, and reviewed final themes, tables, and manuscript drafts. Overall, two-thirds of more than 90 stakeholder recommendations regarded methods, with the remaining recommendations related to result interpretation and dissemination.
Interview Content
The interview guide was developed based on prior conceptual models of subspecialty care, 6,23,24 and it was refined through pilot interviews and stakeholder input. Telemedicine was defined as one specific form of remote care: the delivery of care through audio-visual videoconferencing. The final interview guide discussed in-person and telemedicine-enabled subspecialty care, with current analysis focused on telemedicine-related prompts. These prompts included prior telemedicine experience, perceived uses, benefits, costs, concerns, and preferences for incorporation of telemedicine into subspecialty care. The interview guide also addressed current experiences receiving subspecialty care, which were reported separately. 22 The guide was designed for interviews to last ∼30 to 60 min and is provided in the Appendix.
Recruitment
Telephone interviews were conducted from March to September 2015. We recruited subjects through Pediatric PittNet, a practice-based research network of 23 pediatric and adolescent primary care practices in a six-county region of Western Pennsylvania. Practices participating in Pediatric PittNet are primarily served by one pediatric referral center, which has pediatric subspecialty telemedicine capabilities. Eligible participants were parents/caregivers of children (ages 0–21 years old) ever referred to subspecialty care as well as adolescent patients (14–17 years old) and young adult patients (18–21 years old) ever referred to subspecialty care. To recruit a diverse representation of informants, we solicited participation from a sample of practices both near and far from subspecialty care. Clinical staff at participating sites identified eligible participants during primary care office visits and provided these potential participants with study contact information. To recruit additional caregivers, we asked participating caregivers to identify any additional potential interviewees, a strategy known as “snowball sampling.” To recruit additional patients, we sought caregiver permission to contact eligible children of caregiver participants. Participants received a $25 gift card via mail. All interviews were conducted by a trained investigator with experience in qualitative data collection (L.E.A.). All subjects provided verbal informed consent or assent. The University of Pittsburgh Human Resource Protection Office provided ethical review and approval.
Qualitative Analysis
Interviews were digitally recorded, transcribed, and stripped of personal identifiers. Interview transcripts were analyzed by two investigators (K.N.R. and L.E.A.) using thematic content analysis. 27 A preliminary codebook was developed after reviewing the first five interviews, including a priori codes from prior literature and newly emerging codes. To enhance reliability, the codebook was then reviewed by the stakeholder advisory group, with revisions made based on their feedback. Subsequently, all interviews were coded by using qualitative data software (NVivo 10; QSR International, Melbourne, Australia). Interviews continued until we reached thematic saturation. 28 To increase result trustworthiness, we again reviewed key themes with our stakeholder advisory group at the conclusion of coding.
The results are organized into four domains: (1) potential impact of telemedicine on care processes (i.e., actions that comprise healthcare), (2) potential impact of telemedicine on outcomes (i.e., effects of healthcare), (3) design elements potentially impacting telemedicine acceptability and effectiveness, and (4) contextual factors potentially influencing telemedicine impact.
Results
We interviewed 21 informants (18 parents, 1 grandparent guardian, 1 adolescent patient, and 1 young adult patient; Table 1), with thematic saturation achieved with the 11th interview. The diagnoses that prompted subspecialty consultation included acute conditions (e.g., bone fracture), common chronic conditions (e.g., asthma and autism), and complex and/or rare chronic conditions (e.g., cystic fibrosis, genetic syndrome, spina bifida, and tumor). Self-estimated travel time to usual subspecialists ranged from 5 to 120 min. Respondents reported receiving subspecialty care through in-person visits, telephone, patient portals, and electronic messaging systems; none reported use of telemedicine. All respondents reported being either “comfortable” or “very comfortable” with technology.
Informant Demographics
One informant declined to answer the indicated questions.
Potential Impact Of Telemedicine on Subspecialty Care Processes
Informants discussed the potential impact of telemedicine on processes of subspecialty care (Table 2). Informants believed that telemedicine could increase access to care, but they described different potential implications of this greater ease of access. Some informants envisioned using telemedicine visits to replace current in-person subspecialty visits:
“But I think where we're at now, we're in a maintenance every three months visit to the doctor. I think it could be done on a computer versus having to drive all the way to her office for every visit.”
Potential Impact of Telemedicine on Pediatric Subspecialty Processes and Patient-Centered Outcomes
In contrast, others described using telemedicine to augment current in-person subspecialty visits by providing opportunities to receive care that would have otherwise been missed or delayed:
“There are times when she's too weak to get up, and I've had to cancel appointments. Instead of cancelling, I would have loved to have had the ability to say, ‘Hey, she can't get up today. I don't want to cancel. Here…you know, let's video-conference and discuss what's going on.’ And I can pull her in for the conference.”
Informants felt that telemedicine could also improve scheduling and triage processes, thereby increasing the value of in-person visits. Specifically, they envisioned telemedicine encounters before in-person visits to allow assessment of whether an in-person visit is needed, who is the most appropriate subspecialist to see, and how urgently further care is needed:
“A screening process method seems like a great use of [telemedicine]. Maybe she's having an issue but I'm not sure. Maybe you're the right specialist but maybe you're not. If you could do [telemedicine] appointments where you could just ask some questions and it could be determined if she does need to go come in or not, or if she needs to contact another specialty, that would be helpful.”
Informants also suggested that telemedicine could improve communication and care coordination during the encounter by allowing additional family members or physicians to participate.
“You could have different providers possibly all in that conference, and depending on what it was maybe you would want kind of like a whole team approach to sit down and talk about this. So that kind of gives people flexibility with scheduling and even the logistics of meeting.”
Finally, informants discussed using telemedicine to communicate with subspecialists between scheduled encounters if additional questions arose or their child's status changed.
“If she's going through something, they would be able to see exactly right then and there what's going on, instead of me having to fly down there to see them, and for them to just send me home.”
However, informants expressed concern about the impact of telemedicine on their relationship with subspecialists:
“But I think the biggest thing is still feeling you have that relationship with your doctor … making sure like you still within a year's time take that time and actually make an appointment to see that individual face-to-face, and kind of have that relationship then that way … like you're not losing some of the benefits that you get from going to an appointment.”
Potential Impact of Telemedicine on Subspecialty Care Outcomes
In addition to discussing processes of care, informants discussed the potential impact of telemedicine on multiple patient-centered outcomes ( Table 2 ), including family costs/burden (e.g., travel burden and foregone work), health outcomes (e.g., functional status and symptom management), and parental knowledge/anxiety.
Informants discussed the potential for telemedicine to reduce the costs of subspecialty care, particularly the “opportunity costs” from missed work and school, as well as the family burden from additional stresses such as traveling to appointments and occupying children in waiting rooms:
“It would kind of be nice to just do it by video, because I wouldn't have to take off of work or whatever—or go there. Like that would be more convenient.”
“For me, with doctors' appointments, it's the waiting room that's brutal … So any situation in which I can minimize or avoid a waiting room and still get to communicate with the doctor is a win.”
Among health outcomes, informants envisioned both potential benefits and harms, including not only the possibility of more timely diagnoses and more comprehensive care but also the possibility of missed diagnoses:
But there's such a fine line with that, because what I might feel is ok … just like when we took him … for his regular visit … we knew he was breathing kind of heavy, but we had no idea that it was to the extent that it was that they ended up admitting him. So, I kind of think that you still run a slight risk when you just, when you don't take your child to the doctor [in-person].
Informants also discussed a potential reduction in parental anxiety due to increased access to subspecialty care:
“[Telemedicine] would definitely make our lives easier, it would reduce the anxiety.”
However, some envisioned new sources of anxiety due to increased reliance on family reporting rather than direct examination:
“I suppose the fact that they can't really see him, I guess, and if I can't really say for sure what's wrong with him … if I couldn't explain what's going on with him, I might make it sound not as bad as it actually is or I might make it sound worse…”
Design Elements Potentially Impacting Telemedicine Implementation
Informants discussed policies and protocols surrounding telemedicine use that could influence telemedicine adoption and impact (Table 3). Some of these issues related to features of the technology itself (i.e., reliability, quality, and privacy):
“I would just hope that they had all of their privacy things in order, no breaches in confidentiality.”
Design Elements of Telemedicine Potentially Enhancing Impact on Patients and Families
Beyond these technologic concerns, informants discussed policies and protocols surrounding how families access care via telemedicine. Several of these features related to scheduling and appointment logistics. For example, informants desired transparent scheduling processes to reduce uncertainty and time spent waiting:
“Knowing the timeframe of those things … am I going to know when you're going to call back or is it kind of like, you know, when the refrigerator guy comes? It's going to be between 1:00 and between 8:00, good luck.”
Informants also expressed concern about the reliability of work processes associated with telemedicine visits (e.g., would prescriptions really be sent to the pharmacy?). Informants desired telemedicine visit options that were potentially timelier than their experience with in-person care (i.e., same day), and the ability to engage in visits with little or no travel (i.e., from work or home). Some informants also requested guidelines for telemedicine use to reduce uncertainty about when to use it:
“I think a clear-cut outline of the tool that it's going to be would be very useful on [hospital web]site, and even having a toll-free number where you could discuss it with somebody to see if it is something that qualifies for that type of environment.”
In addition, informants desired access to telemedicine that enhanced, rather than undermined, continuity with specific providers:
“I would want to know that it's someone in that practice, someone who's familiar with them, and not just like an answering service type thing … I would want to know that it's not generic people, but people who were apprised of his individual case.”
Additional design elements discussed included family cost, subspecialist buy-in, and family ability to exercise choice regarding telemedicine use.
Contexts Potentially Impacting Telemedicine Adoption by Patients and Families
Informants discussed the potential for chronic diagnosis and acute medical needs to impact the appropriateness of telemedicine for a given child, a given diagnosis, or a given visit (Table 4). For example, informants suggested that telemedicine might be particularly advantageous for children dependent on technology (i.e., chronically ventilated), immunocompromised, or with developmental/behavioral concerns. Parent/family factors impacting appropriateness or interest in telemedicine included travel time, comfort with technology, Internet access, and insurance coverage.
Contextual Factors Impacting Telemedicine Perceived Usefulness by Patients and Families
Discussion
Through stakeholder-guided qualitative analysis, we identified patient and family perspectives on telemedicine for subspecialty care, including potential impact on processes and outcomes, design elements modifying potential impact, and child and family factors influencing perceived value. These perspectives may be valuable for developing and implementing telemedicine-based subspecialty services and in guiding assessment of such services.
In terms of implementation, our results suggest that the use of telemedicine should be considered more broadly—not only as a replacement for in-person visits but also for other uses. At present, outpatient telemedicine often follows similar scheduling processes and visit expectations as in-person visits, 18 and informants identified potential advantages of using telemedicine in place of some in-person visits. However, they also discussed more innovative uses of telemedicine. Specifically, they spoke of using telemedicine not to replace an in-person visit but to optimize the value of an in-person visit through previsit telemedicine communication and postvisit telemedicine follow-up. These findings suggest that telemedicine programs may be missing opportunities to improve care if they are neglecting these potential uses. Notably, regulatory issues such as whether telemedicine can be used in the absence of a preceding in-person visit to establish a doctor-patient relationship 16,29 –31 may create barriers to some more innovative uses of telemedicine.
It is worth noting that other communication strategies such as telephone consults and store-and-forward telemedicine might achieve these same goals of enhancing previsit and postvisit care coordination. Our results emphasize that families desire greater accessibility of subspecialists outside of in-person care and that they view telemedicine as one potential means of achieving this. Our results cannot determine which strategy is optimal for enhancing family-subspecialist communication, but differences in reimbursement across these strategies may influence which strategy is sustainable.
Informants also discussed other key aspects of implementation. Optimizing the technology itself was of interest to patients and their families, and it is a shared concern of pediatric providers. 17,32 –34 However, informants were also interested in nontechnological aspects of implementation, including timely and transparent scheduling, reliable workflow, continuity with trusted providers, clear indications for use, and preservation of family choice. Although some of these concerns have been raised by providers, 33 others have not been described, such as preserving family choice and providing families with guidance on appropriate indications. Attention to these concerns has the potential to influence not only the effectiveness of telemedicine but also whether it is used in the first place.
Our results also provide guidance for evaluation efforts. Past evaluation of outpatient subspecialty telemedicine often compared telemedicine visits with in-person visits, 10,11 and such head-to-head comparisons have been important for establishing safety and efficacy. To understand the overall impact on patients, however, a more salient comparison may be longitudinal comparisons of care where telemedicine is an option (i.e., both telemedicine and in-person encounters available) versus care where telemedicine is not an option. This evaluation paradigm acknowledges that, at least from the perspective of parents and patients, telemedicine's greatest value may not be in directly replacing in-person subspecialist visits but instead in providing more comprehensive, continuous communication and care before, during, and after in-person visits.
Also related to evaluation efforts, our study expands the domains by which telemedicine should be evaluated beyond those often examined in prior outpatient subspecialty telemedicine studies. For example, informants emphasized the potential reduction in opportunity costs, family burden, and family anxiety. Patient and family opportunity costs have traditionally been unvalued or undervalued, 35 although they are clearly substantial. 36 Incorporating a fuller range of outcome measures in evaluation will provide a greater understanding of the benefits and harms of telemedicine for those seeking pediatric subspecialty care.
Our study has several limitations. First, as a qualitative study, our results should be viewed as hypothesis generating, with further work needed to test and prioritize the preferences identified. Second, we recruited more caregivers than patients, but our analysis was not intended to compare these groups, and it instead focused on summarizing the range of perspectives among patients and caregivers, which our sample allowed us to do. Third, although we did not exclude participants with telemedicine experience, our sample consisted entirely of individuals experienced in the receipt of subspecialty care but without telemedicine experience. As such, informants may overestimate or underestimate the strengths and weaknesses of telemedicine. However, because potential users of pediatric subspecialty telemedicine far exceed actual users currently, we believe that the perspectives of these potential users are particularly valuable. Fourth, we recognize that our analysis is limited to telemedicine as defined for our informants (“audio-visual videoconferencing”) as opposed to other forms of telemedicine. Finally, our analysis cannot comment on the feasibility of informant recommendations from the viewpoint of subspecialists and healthcare systems.
Conclusions
Overall, families and patients identified uses for telemedicine that went beyond replacement of traditional in-person visits, resulting in a vision of telemedicine-enhanced pediatric subspecialty care that is vastly more responsive to patient and family needs than current systems. Much of this vision hinges on implementation details: how families access telemedicine and for what purpose. Informants identified design elements with the potential to impact the effectiveness of telemedicine programs, including timeliness, location, transparency, reliability, continuity, cost, family choice, and guidelines for use. Integration of telemedicine offers an opportunity to transform pediatric subspecialty care, but understanding and responding to patient and caregiver perceptions and preferences will be crucial to ensure that telemedicine is used in ways that take advantage of its strengths instead of simply repeating prior models of care delivery.
Footnotes
Acknowledgments
The authors thank the Pediatric Care Delivery stakeholder advisory group, including Pamela DeGeorge, Kathleen Dempsey, Deborah Moss, Amy Philips-Haller, and Mary Ann Rigas, for contributing their time and wisdom during this study. This work was supported, in part, by grants from the Agency for Healthcare Research and Quality (K12HS022989, Dr. Ray) and the Children's Hospital of Pittsburgh of the UPMC Health System (Dr. Ray) and by the National Institutes of Health (UL1TR000005). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funders. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the article.
Disclosure Statement
No competing financial interests exist.