Challenges Facing Children with Special Healthcare Needs and Their Families: Telemedicine as a Bridge to Care

Abstract

Telemedicine is an increasingly utilized mode of healthcare delivery, which improves access to care for vulnerable populations. Children with Special Healthcare Needs (CSHCN) and their families face significant challenges, such as geographic, financial, and sociocultural barriers, in accessing needed healthcare services. The literature supports telemedicine as an effective accepted bridge between CSHCN and their providers. A growing body of telemedicine projects also suggests cost-effectiveness when considering the direct and indirect costs the families of CSCHN incur in seeking healthcare services. These new systems of care should prioritize caring and family centeredness while reducing the burdens of CSHCN and their families.

Introduction

Children with Special Healthcare Needs (CSHCN) include “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”^1,2 CSHCN and their families face significant challenges accessing healthcare services within their communities. These challenges are compounded for CSHCN and families residing in rural, remote, and medically underserved areas.

Telehealth, including telemedicine, is increasingly utilized to provide much-needed healthcare services to individuals residing in these communities. The literature presents many different definitions of telemedicine, which have evolved to reflect technological developments over the years. For the purpose of this article, telemedicine for CSHCN is defined as the provision of healthcare utilizing an interactive communication system linking pediatric specialty providers to CSHCN, their families, and local providers in remote, rural, and medically underserved areas.^3,4

It is clear that ideal systems of care for CSHCN should be accessible, reduce financial burden, deliver both caring and family-centered care to build family–provider partnerships, and optimize health outcomes for CSHCN and their families. Telemedicine provides a solution or, at the least, an alternative to the traditional system of care for healthcare providers and communities attempting to address access and financial concerns of families of CSHCN. This article provides an overview of the challenges facing CSHCN, telemedicine as a clinical option, and the potential of telemedicine as a bridge to healthcare for CSHCN, families, and providers.

Challenges and Burdens of CSHCN

Children are identified as having special healthcare needs if they require healthcare services beyond that of other children.^1,2,5 Estimates from the 2010 National Survey of CSHCN indicate that 15.1% of U.S. children ages 0 to 17 have special healthcare needs and 23.0% of households with children include at least 1.⁶

The challenges and burdens reported by families of CSHCN are supported throughout the literature. Access to care is frequently cited as a burden on families of CSHCN, particularly as it relates to unmet needs. As early as 1992, Newacheck and Taylor⁷ reported that CSHCN and their families experienced substantial added burdens, including increased school absences, physician contact, and hospital days, all related to their chronic conditions. Their study estimated the cost of hospital and physician care related to chronic conditions for these children to be $7.5 billion annually.

Subsequent studies continue to emphasize these challenges and burdens. The 2009–2010 National Survey of Children with Special Healthcare Needs⁶ results indicated that almost 23.5% of CSHCN reported unmet needs for healthcare services. Nationally, 22.1% of parents paid more than $1,000 out-of-pocket in medical expenses per year for their CSHCN, 21.6% nationally reported family financial problems due to their CSHCN, and 25.0% nationally reported that they had to cut back or stop working due to the needs of their CSHCN.⁶ CSHCN have a much greater perceived need (53% vs. 18%) for specialty care; predisposing factors for having unmet needs for routine and specialty care include African American or multiracial background, mothers with less than a high school education, lack of insurance, and living below the federal poverty level.⁸

In a study of the prevalence and characteristics of CSHCN, van Dyck et al.⁹ noted the major impact on families to include financial burden (20.9%), spending large amounts of time arranging for and/or providing care for the CSHCN (14.9%), and reduction or loss of employment due to the CSHCNs condition and needs (29.9%). The 2005–2006 National Survey underscored these challenges with reports of healthcare-related financial problems (56.8%), medians of 2 h for the care coordination and 11–20 h for the provision of care, and significant unemployment due to the child's health (54.1%).¹⁰ Families of CSHCN with more severe conditions were most impacted.

An exploration of financial burden from 2001 to 2010 found that lack of adequate insurance coverage remains a driver of financial and nonfinancial hardships for CSHCN and their families.¹¹ Insurance coverage significantly reduces the chance of financial problems and burdens while improving access to care.^12,13 The 2001 National Survey of CSHCN demonstrated negative effects associated with underinsurance, including impaired access to medical homes, community-based systems of care, and transition-related services, as well as poorer outcomes overall.¹⁴ Yu and Singh's¹⁵ analysis of the 2005–2006 National Survey also highlighted that CSHCN from non-English primary language families faced significant barriers in access to quality care and were four times as likely to lack health insurance. Family members were nearly twice as likely to stop employment due to the child's condition, further exacerbating the economic burden.

The literature is consistent and clear in respect to the burdens placed on families of CSHCN across our society. These burdens are further complicated and compounded when combined with access to care issues for CSHCN within their communities.

CSHCN and Disparities in Access to Care

Historically, healthcare services for CSHCN have been challenging for families and providers alike in terms of availability and access. Families frequently face multiple barriers to care, including availability and access to providers, as well as financial, insurance, and geographic barriers to care.¹⁶ Problems with access to pediatric specialty care are compounded by a more frequent need by CSHCN for routine and urgent healthcare.¹

The literature highlights issues with access to pediatric specialty services for CSHCN. Access to healthcare (particularly pediatric specialty care) is especially challenging in rural areas and poses an even greater challenge for families of CSHCN in these communities.¹⁷ CSHCN in rural and medically underserved communities experience disparities in access because there are fewer pediatric specialty services available, and the services are frequently available only at a distance from their community.^1,18 This results in profound hardships for families and CSHCN, and it particularly impacts the most fragile children who are dependent upon life-sustaining medical equipment such as ventilators, supplemental oxygen, and feeding pumps. Transportation for medical appointments also becomes a disruptive burden for these families. Pediatric specialty appointments for families in rural areas can be expensive ventures involving overnight travel costs and loss of pay, which especially impact families of day laborers. These are burdens and costs they can least afford.¹⁹

An analysis of historical data from the National Health Interview Survey on Disability indicated that minorities were more likely to report inability to obtain needed care and be without health insurance coverage and a usual source of healthcare.²⁰ While disparities in access and utilization existed among all minorities, the gaps in access to primary care, specialty care, and ancillary healthcare services were greatest for Hispanic CSHCN. Access and utilization of specialty care were much lower among Hispanics and non-Hispanic blacks even when controlling for chronic conditions, insurance, and socioeconomic status. Access to specialty care was especially impacted among the near poor, those families between 125% and 200% of the federal poverty level.²¹

Studies of the association between a parent's language and access to care concluded that CSHCN with non-English speaking parents were more likely to experience unmet needs, barriers to access to care, including lack of access to a medical home.^15,22 Porterfield and McBride²³ identified parental income, education, and insurance to be associated with access to specialty care. Davidoff²⁴ noted that almost 20% of low-income CSHCN experienced an unmet need in accessing some form of healthcare services. A survey of families of CSHCN in 20 states found that specialty services were the most frequently needed (86.3%).²⁵ As the number of service needs increased for the CSHCN, reports of access problems and unmet needs increased significantly.

Telemedicine has been increasingly recognized as a means of improving access to specialty care services to underserved rural communities.²⁶ One study of parents/guardians of CSHCN in a rural, medically underserved area identified major barriers to pediatric specialty care as travel time greater than 1 hour for appointments (83%) and missing work for appointments (96%). Ninety-eight percent of the parents/guardians indicated they wanted to continue to receive their consultations utilizing telemedicine versus traveling to the pediatric specialty center in the future.¹ The American Academy of Pediatrics suggests that telemedicine minimizes this multidimensional burden.²⁷

Telemedicine as a Clinical Option

Telemedicine, as a mechanism for providing access to healthcare services, is proving to be an acceptable solution to healthcare access issues for patients, families/caregivers, and providers alike. Research over the last 15 years indicates positive patient/caregiver satisfaction with telemedicine services.^{1,4,26,28

–32} In two studies of telemedicine specific to CSHCN, the children and caregivers were found to be satisfied with telemedicine services.^1,29 Studies examining providers and telemedicine also indicated a high degree of satisfaction.^1,26 In fact, the more a physician worked with telemedicine, the more positive their attitudes were regarding telemedicine.²⁹

Research indicates that care provided utilizing telemedicine is acceptable and does not pose any adverse risk when compared to traditional face-to-face care.^1,3,33,34 While research indicates patient/caregiver satisfaction with telemedicine services,^{1,4,26,29,30,32

–35} further research is needed to evaluate telemedicine with respect to perceptions of personal and human connection, caring environments, quality of care, and health outcomes.⁴

Cost and Reimbursement

Costs, including expense and reimbursement problems, are frequently cited as significant barriers to healthcare delivery utilizing telemedicine.³⁵ Financial factors have been identified as playing a major role in deployment of telemedicine, with initial capital investment appearing to be the most important financial indicator in the decision-making process.³⁶ The lack of consistent insurance reimbursement has been a financial barrier to the deployment and sustainability of telemedicine programs. Currently, laws and policies regarding reimbursement for telemedicine services are inconsistent across the United States. As of 2014, 17 states had laws recognizing and assuring reimbursement for telemedicine services for both public (Medicaid-Title XIX) and private insurance; limited Medicaid coverage exists in 43 states.³⁷ Likewise, some private insurance companies provide coverage in some but not all states. At the national level, Medicare does provide limited coverage for telehealth services. Telemedicine projects are frequently initiated with grant and demonstration project funds; however, it has been difficult to continue projects as economically sustainable programs due to inconsistent or lack of reimbursement by public and private insurance.

There have been limited studies on the cost of telemedicine visits compared to traditional face-to-face specialty care. Most recently, a policy statement by the American Academy of Pediatrics²⁷ determined that telemedicine can lead to overall cost savings. In a systematic review of cost-effectiveness, only 55 of 612 articles presented actual cost benefit data.³⁸ While many articles noted that telemedicine is cost-effective, they equated benefits with program cost savings. The majority of the studies were small-scale, short-term, and pragmatic evaluations of telemedicine projects across varying healthcare systems; several relied on single-point estimates of cost. These limitations made it difficult to generalize findings from individual studies.

The cost-effectiveness of telemedicine includes the potential to lessen burden of disease, especially as costs are reduced as utilization of telemedicine increases in clinical sites.^39,40 Across eight rural clinical sites, De la Torre et al.⁴¹ found that telemedicine costs were directly dependent on the number of consults performed by site; differences in cost were correlated to utilization of services, with higher utilization resulting in lower costs. A cost analysis study of 10 school clinical sites and a university medical center pediatric ambulatory site suggested that when 200 or more consults were completed, telemedicine was cost competitive with traditional clinics.³⁵ Another study using telemedicine for ophthalmology found telemedicine to be cost-effective in reducing the burden of eye disease in terms of cost per Disability-Adjusted Life Year averted.⁴²

Few studies consider the cost burdens on families in terms of traditional face to face versus healthcare delivered utilizing telemedicine. A comparison of out-of-pocket travel costs for a traditional versus telemedicine visit at the tertiary center indicated monetary costs were reduced for families receiving telemedicine, thereby reducing financial burden.²⁹ An economic evaluation of the Queensland pediatric telemedicine program suggested that telemedicine reduced burdens on the family with decreased travel time, out-of-pocket expenses, and lost time from work.^43,44 In an examination of time and travel costs for 83 cases,⁴⁵ telemedicine provided cost savings to professionals as well as the family, with an average savings in family out-of-pocket costs of $125 per session. The Indian Health Service telepsychiatry demonstration project compared the cost of the telemedicine against transport to the clinical site and determined that telemedicine cost $200 per month less.⁴⁶ The sparsity of studies addressing the family cost burden component of cost-effectiveness for telemedicine compared to face-to-face care is evident and points to the need for further research in this area.

Current literature indicates the need to further research the cost-effectiveness and impact of telemedicine versus the cost of traditional face-to-face care within diverse and underserved populations.^{1,4,30,35,36,41,47
–49} The American Academy of Pediatrics²⁷ asserts the potential of telemedicine to improve efficiencies of care by increasing appropriateness of referrals to specialists and decreasing testing redundancies.

Telemedicine and Access to Care

In all of the research literature, the authors consistently note the role of telemedicine as a mechanism for addressing access to care issues by linking specialty providers to patients in rural, remote, and medically underserved communities.^{1,4,26

–29,33,34,36,41,50,51} Results of an integrative literature review⁴ suggested that patients are amenable to telehealth interventions as part of their healthcare. Telemedicine is seen as an increasingly viable solution effectively addressing access to care problems. A study of 182 consultations across specialty areas in rural, underserved California communities examined perceptions of residents before and after telemedicine programs were implemented.²⁶ Findings indicated a higher opinion of local healthcare quality and satisfaction by providers and families alike for those who had experienced telemedicine compared to those who traveled outside their community for healthcare.

Studies indicate that telemedicine is increasingly being utilized as a mode of healthcare delivery that improves access to care, particularly for vulnerable populations living in rural and remote communities. A systematic review of the literature suggests that telemedicine has been implemented in a variety of settings and provides access to care, and that patients and families are receptive to and satisfied with telemedicine.⁵² Methodological deficiencies identified in these studies included small sample sizes, low response rates, and simple survey tools without evidence of reliability and validity. Researchers note the need for further studies examining communication issues and the provider–patient relationship.

Telemedicine and CSHCN

Telemedicine has a fairly robust track record as a clinical tool for pediatric populations. Since 2000, the literature includes a growing number of articles describing demonstration projects related to telemedicine and children both within and outside of the United States. Projects have ranged from services for all children in communities and schools to those particularly focused on access to pediatric specialty care for CSHCN.

Many telemedicine projects have been implemented into school health and day care programs. Interviews and focus groups on the school telehealth project TeleKidCare indicated that teachers, nurses, and administrators involved all supported telemedicine as a mechanism to deliver healthcare to underserved children in their schools.^38,53 A subsequent case study concluded that the project changed the way healthcare was being delivered to children within the school system. In 2001, the seminal telemedicine project Health-E Access was implemented at five inner-city child care centers in Rochester, New York. A before and after design study using historical and concurrent controls indicated a 63% reduction in absences due to illness was attributable to telemedicine.³⁰ Ninety one point two percent of parents indicated that problems managed through telemedicine allowed them to stay at work, and 93.8% of parents indicated that the problem would have otherwise resulted in an office or emergency room visit for their child.

McConnochie et al.⁵⁴ evaluated a telemedicine model for diagnosis of common acute childhood illness and found that the reproducibility of the telemedicine diagnosis did not differ from the traditional face-to-face evaluation, with the exception of upper respiratory infections and ear symptoms. Furthermore, a follow-up study found that the safety and effectiveness of the Health-E Access program matched that of care for children in regular childcare and schools.³⁴

The literature also offers limited but promising evidence supporting effective telemedicine interventions for CSHCN and their families. A demonstration telemedicine project in Georgia connected pediatric specialists at a tertiary clinic with a rural clinic to improve access and reduce burdens on families and CSHCN in the rural community.²⁹ Results indicated caregiver and provider satisfaction with telemedicine with increasingly positive results as usage increased across clinical settings. Telemedicine was also more successful as part of an integrated service delivery model compared to telemedicine-only visits. A telemedicine project for CSHCN in an underserved rural community in California found that families faced significant barriers and hardships accessing specialty care before implementation of telemedicine.¹ These barriers and hardships included extensive travel time, lost time from work, frequent reliance on local emergency departments, and parental self-regulation of their child's medications. In a 3-year period, 55 CSHCN received 130 telemedicine consults by pediatric specialists; providers and families of CSHCN reported high levels of satisfaction with telemedicine. In fact, the overwhelming majority of parents (98%) stated that they wanted to continue receiving pediatric specialty visits through telemedicine versus traveling to the tertiary center. Telemedicine was found to reduce travel, work loss, and financial burdens on the families. These results further emphasized the importance of telemedicine in reducing access to care issues for CSHCN, presenting a viable solution for rural communities.

A publicly funded telehealth program providing care for children with diabetes and other endocrine disorders in remote and rural areas resulted in family satisfaction, decreased mean interval between visits (from 149 days at onset to 89 days in year 2), reduction in emergency room visits (from 8 to 2.5 per year), decreased hospital days/length of stay (from an average of 13 per year and 47 days to 3.5 a year for 5.5 days), and total program cost savings of $27,860 per year.⁵⁵ A Florida telemedicine network established to provide rapid clinical assessments of children when there were allegations of child abuse connected nurses and physicians at community hospitals with experts at the major medical center hub site.⁵⁶ An anecdotal evaluation reported that while the nurses went through phases of adjustment, they soon became comfortable with the technology and felt it did not interfere with the nurse–patient relationship. An Australian telepediatric program provided over 1,500 specialty consultations in 25 pediatric subspecialty areas and found improved access to specialty care clinics, increased specialty visits, and high satisfaction.⁴³ A Belfast telemedicine study of 66 newly diagnosed CSHCN with major Congenital Heart Disease (CHD) indicated that providing videoconferencing support for families of children with CHD is technically feasible and safe.⁵⁷ In addition, it was noted that videoconferencing offered additional benefits to telephone support, including reassurance to families and the ability to make clinical management decisions.

Telemedicine is increasingly being used for delivering behavioral and mental health services to children. A tertiary child and adolescent psychiatry outreach pilot program in rural Australia concluded that telemedicine provided access to effective tertiary psychiatric services for children and adolescents living in isolated areas, which resulted in cost savings while supporting rural health professionals and enriching rural mental health services.⁵⁸ Harper⁴⁵ described a project providing interdisciplinary telemedicine evaluations for CSHCN in rural Iowa that included treatment protocols for CSHCN with physical as well as behavioral conditions. Parents of CSHCN in the telemedicine group thought telemedicine was as effective as those receiving face-to-face consultations. A pilot project delivering cognitive behavioral therapy (CBT) through telemedicine for childhood depression indicated that all parent and child CBT skills were successful through telemedicine and that remission rates from depression did not differ between the telemedicine and face-to-face treatment groups.⁵⁹ An Iowan Indian Health Service regional mental health clinic used telemedicine to provide behavioral health services to American Indian children and adolescents; findings indicated success in providing access to behavioral healthcare, and families were both receptive to and satisfied with services.⁴⁶

Key Constructs: Family-Centered Care and Caring

As telemedicine programs are implemented for vulnerable populations such as CSHCN and their families, leaders and practitioners should consider the domains of family-centered care and caring into the clinical planning process. Families are intricately involved with their children's daily lives, especially as key partners in caring for their child's special healthcare needs. In 2005, the Maternal Child Health Bureau recognized family–provider partnership as the foundation of family-centered care and defined family-centered care as inclusive of the following principles: families and professionals working together in the best interest of the child with the child assuming a role in this partnership as they grow, respect of skills and expertise brought to the relationship from both families and professionals, trust, communication, and sharing of information, decision-making together, and a willingness to negotiate.⁶⁰

The importance of family-centered care has been recognized through several studies over the years. Denboba et al.⁶⁰ found family-centered partnership predictive of improved outcomes in respect to several health measures, including access to specialty care, missed days from school, satisfaction, and unmet needs for services for the CSHCN and family. Family-centered models of care have also been found to be predictive of enhanced satisfaction with services by families of CSHCN.⁶¹ Kuo, Bird, and Tilford⁶² conducted a secondary analysis of the 2005–2006 National Survey of Children with Special Healthcare needs and found that family-centered care is associated with improved clinical outcomes and reduced burden. While telemedicine can assure access to pediatric specialty care, it is critical that research determines whether this delivery model meets the criteria of family-centered care for CSHCN.

Caring has long been a concept central to the focus of nursing care and certainly to the delivery of healthcare services in general. Swanson⁶³ postulates that caring equals compassion and competence. The introduction of telemedicine as a mode of healthcare delivery to traditionally “hard to reach” populations residing in rural, remote, and medically underserved areas introduces concerns among healthcare providers and recipients alike regarding the potential loss of the human caring factor as well as competence of the provider delivering the healthcare service.

Conclusion

The review of the literature substantiates the challenges facing families of CSHCN in terms of financial burdens and access to pediatric specialty care. These challenges are compounded further when combined with such issues as poverty and residing in rural medically underserved areas of the country. It is clear that systems of care for CSHCN should be accessible and construed by recipients as caring and family centered to build family–provider partnerships and optimize health outcomes for CSHCN and their families. Systems of care for CSHCN should be designed to be caring and family centered, and to reduce the burdens and challenges faced by CSHCN and their families.

Telemedicine is increasingly being utilized as a mode of healthcare service delivery to promote access to care for CSHCN in rural and medically underserved communities. Advances in telemedicine for CSCHN will inform systems of care for other vulnerable groups, including correctional populations, those living with chronic illness, and those who experience distance and access to specialty providers as an ongoing issue. This warrants further investigation as we design systems of care for CSHCN, with the ultimate goals of being caring and family centered, as well as reducing burdens from the family perspective.

To date, there is a lack of research regarding telemedicine compared to traditional face-to-face care in respect to family financial burden/cost, caring, and family-centered care for CSHCN. Future studies need to consider these factors as telemedicine projects expand beyond direct clinical settings to incorporate components such as care coordination, home care, including disease management, and remote monitoring for chronic health conditions. Greater evidence surrounding these novel delivery systems is necessary to improve provider and family knowledge, as well as scope of practice and reimbursement policies.

Telemedicine is rapidly advancing and offers an alternative way to access care for vulnerable populations, particularly those in remote, rural, and medically underserved communities. To promote acceptance by healthcare providers and recipients of healthcare, it is critical to provide research-based evidence that healthcare services provided through telemedicine are cost-effective, caring, and family centered.

Footnotes

Disclosure Statement

No competing financial interests exist.

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