Although the territory of high-tech and high-cost communication devices were previously more difficult to attain, videoconferencing is now readily available in more and more community settings. Today, most health care professionals have dedicated phone line access (ISDN) in their offices, which is the technology required, along with a video camera and viewing station, that to enable the provision of videoconferences with remote specialty care providers.
The medical home model has crystallized health care's commitment to providing comprehensive care to children and their families. As health care providers strive to provide quality care in the child's home community whenever possible, telemedicine appears to be a critical part of that comprehensive care, increasing access to pediatric specialists and services (Marcin et al., 2004; Spooner & Gotlieb, 2004). On average, about one-quarter of the young children followed by health care providers experience feeding difficulties (Mays & Volkmar, 1993). Most of these children will respond well to suggestions offered to parents on feeding methods, food choices, approach, and behavioral recommendations.
However, when children need more specialty care than health care providers can offer, it is unlikely that the necessary care will be available in the community. The numbers of complex feeding disorders in any given community is too small to necessitate a comprehensive feeding program in each community. The answer is an ISDN phone connection away.
Numerous models effectively bring specialty care closer to patients' homes through the use of telemedicine. For example, in Boston beginning in 1996, Beth Israel Deaconess Hospital's Baby CareLink was one of the first applications of teleconferencing to reduce family burden and improve understanding of a child's follow-up care (Halamka, 2001). In Georgia, California, and Texas (among others), telemedicine has made care and consultation for children with special needs accessible to rural communities (Karp et al., 2000; Marcin et al., 2004; Robinson, Seale, Tiernan, & Berg, 2003). There are also models of teleconferencing being used to facilitate training, communication, and follow-up. These pilot projects have demonstrated the value of telemedicine in providing pediatric specialty care and have paved the way for applications to lower the incidence of developmental disorders in pediatric populations.
In the case of specialty programs found in only a few centers across the United States, the mandate to make the program accessible to families is very clear. These programs are designed to treat low frequency, high complexity pediatric disorders that cannot be effectively treated in each geographic community. Enhancing the availability of these programs to distant communities serves to improve health care outcomes while at the same time limiting its costs.
Since its inception in 1995, the Feeding Disorders Program at Children's Hospital, Richmond, VA has served children and families from distant geographic areas. These children are in some cases dependent on feeding tubes for nutrition, and in other cases, unable to eat age-appropriate food textures; or not growing well, or demonstrating behaviors, making it impossible for their families to feed them adequately. In addition to their feeding difficulties, most of the children have other chronic medical conditions (such as cerebral palsy, short gut syndrome) that complicate their care. Their families have exhausted resources in their home communities. Their community health care providers seek effective consultation and treatment options that will allow these children to eat effectively, thereby enhancing their health, independence, and psychosocial functioning.
Despite the obvious need, traveling hundreds or thousands of miles for an intensive treatment program several times per week is costly, and does not ensure that children will be able to maintain gains once they return home. To address these issues, it was determined that a pilot application of teleconferencing would be carried out to assess its value in extending program access to diverse communities. Goals of this pilot program are listed in Table 1. The goals are family-centered, with a focus on providing needed services in a convenient, low cost, and effective manner.
Pilot Project Method
Planning began in 2001 to evaluate the feasibility of adding a teleconferencing option at Children's Hospital that would enable health care providers and families to have remote access to the specialty team of the Pediatric Feeding Disorders Program. The planning group included representatives from information technology, psychology, case management, and program manager to identify the needs and goals of the teleconference.
Preliminary planning for implementing the program was extensive. The planning group:
* Conducted a site visit to the University of Virginia Medical Center's Telemedicine program. This consisted of observing telemedicine conferences in progress as well as gathering information about equipment needs.
* Developed informed consent to make sure family members understood that the teleconference was observed by multiple team members and to assure that information was kept confidential. This document was modified from the informed consent that family members typically sign when they are treated in the medical facility.
* Clarified legal and medical record issues. This involved consultations with the hospital's legal representative to discuss any potential concerns. The director of the medical records department was also consulted to determine how the teleconference would be documented and how this would become part of their medical record at the hospital.
* Pilot-tested equipment at the local facility. A local site with the necessary equipment was identified, and a pilot clinic was set up. The nurse practitioner, psychologist, and dietitian conducted the clinical interview and observed the child feeding. The network administrator and case manager were also present. The families that participated provided feedback, which supported further work on the project.
* Secured grant support was necessary to purchase the equipment and fund the clinicians' and case manager's time when participating in the teleconferences.
* Purchased and tested equipment to make sure it was compatible with the authors' network system and to assure disconnection would not occur in the middle of the appointment.
* Developed evaluation forms for families and feeding team members to complete after each teleconference. This was important for assessing the positive and negative feedback used to improve the process.
* Developed information packets to determine appropriate candidates. This was developed by the case manager and the psychologist.
* Completed room preparation for optimal viewing on the receiving end. Lighting and background wall color were adjusted for best contrast. This involved consulting with the head of the hospital facilities department for recommendations of paint color and installation of adjustable lighting.
Each teleconferencing visit during this pilot study required careful planning. Numerous details had to be thoroughly addressed to ensure a smooth process. Details included having adequate clinical information, identifying a remote site convenient to parents, testing the connection prior to the scheduled appointment, arranging schedules to enable health care providers to accompany families to the teleconferencing visit, and planning for needed materials, including food and utensils, adequate seating (for example, high chair, booster seat), and quiet toys available for the child during the session.
From September 2002 to October 2004, the teleconferencing pilot project served 15 children with complex feeding disorders referred from locations from 300 to 3,500 miles away. Twelve children were seen for initial evaluation, and three children for follow up. The six girls and nine boys ranged in age from 8 months to 10 years old; 80% of the children were younger than 5 years old.
Children, families, and health care professionals participated in teleconferences from a site close to their homes with the remote team at Children's Hospital. Remote sites varied from pediatric clinics to universities. As Table 2 indicates, the children seen resided in 11 states and one foreign country. Typical participants at the remote sites included the child patient, two parents/ family members, and the child's health care provider(s). In several cases, a speech therapist attended the session as well as the treating physician.
Follow up to the sessions was accomplished by phone and with a detailed letter to the child's treating health care provider documenting findings and recommendations. In 50% of the initial screenings, additional recommendations were made for improving treatment in the child's home community. In the other 50%, admission to the comprehensive day treatment program at Children's Hospital was required to accomplish treatment goals.
Additional follow up with the families participating in the teleconferencing was accomplished through administration of a questionnaire by phone or fax (according to family preference) during the several days following the teleconference. This questionnaire included queries about the family's comfort with the teleconference, ways in which it had an impact on their child's care, level of satisfaction, and whether they would choose teleconferencing again. For the first four patients participating, similar questionnaires were completed by remote health care providers and by the Children's Hospital team to provide input into ways to improve the process for the remainder of the pilot project.
Participants, both families and health care providers, reported a high level of satisfaction with the teleconferencing option for care. Costs were reduced dramatically for families due to minimizing travel. Clinical outcomes demonstrated decreased reliance on feeding tubes for nutrition and improved skills and confidence for community-based providers in supplying ongoing care.
Reduced burden to families. The costs of care are a significant barrier to families when their children require specialty care from distant locations. Costs savings in this project were captured by using an online travel search engine (Travelocity.com) to identify the cost of preplanned coach air travel for the child and one family member from the airport closest to the family to the Richmond, VA, airport. Added to this cost were local per diems of $74 for one night overnight lodging and $64.50 per day (full rate for parent, 50% of standard for child) for meals for 2 days (Virginia Commonwealth University, 2006). This was compared to local travel costs of 30 miles round trip car travel at 0.365/mile. Due to the variability in salaries and work schedules, missed work time was not included in the calculations, though typically, one-half day was missed for the telemedicine consultations as compared to 2 full days for children who must travel to the Children's Hospital Feeding Clinic. For participants within the United States, costs of travel to the program for transportation, food, and lodging alone averaged $917, as compared to less than $20 for a locally based teleconferencing session. For many, if not most, of the families, this cost differential made the difference between access and no access.
Family satisfaction. Satisfaction with the care provided by the teleconferencing consultations included ratings on a 1 (very dissatisfied) to 5 (very satisfied) Likert-type scale assessing three components:
1. How satisfied were participants with teleconferencing?
2. How comfortable did they feel using this modality?
3. How effective was the communication between their home community health care provider and remote medical team? Participants were also asked how likely they would be to use teleconferencing in the future for their children. As Table 3 indicates, families were very satisfied with this consultation modality. All 15 families stated that they would use teleconferencing again, with many adding comments such as 'Of course,' and 'Saved time and money.'
Families made additional comments about the reduced burden of care. Some of these comments suggested an increase in satisfaction of care due to the reduction of stress often accompanied with long-distance travel. 'It was easier to stay in town than having to pack up everything and come out.' Families also recognized teleconferencing could help them avoid the high level of physical demands that long-distance travel can produce, especially for children with complex medical needs. 'He would have been real tired if he had to travel out there.' Other comments suggested satisfaction with the ease in which families were able to access the health care providers not typically offered in their communities. 'It was easier to gain access to [specialty] physician.'
Team members and community care providers were pleased with the modality as well. Many commented on how much easier teleconferencing was than phone consultation due to the face to face communication and ability to ensure that both local and remote provider were observing the same feeding behavior. Community care providers noted the value of having a convenient method of consulting specialty care providers. Children's Hospital Feeding Team members appreciated the teleconferencing option as a method for getting information, believing that they were able to get a more comprehensive picture of the child from this modality than via written records or phone calls.
Clinical outcomes. As mentioned previously, half of the initial consultations resulted in recommendations that enabled the child to be treated effectively in their home community. These included recommendations for additional tests (such as gastrointestinal studies, swallow studies), a specific therapeutic approach (such as Beckman oral motor exercises), behavioral interventions or medication.
Six children were recommended to travel to the intensive day program at Children's Hospital for an approximate 6-week stay. These children had treatment goals that included discontinuing their tube feeding, expanding their range of accepted foods, and transitioning from supplemental formulas to a regular diet. A typical patient among them was a 3-year-old girl who on baseline was taking in an average of 338 calories per treatment day by mouth, of an overall daily caloric requirement of 1,326 calories. Behavioral observations showed that this child accepted 56% of bites offered to her at a meal, and swallowed her food only 44% of the time. Thirty-five percent of the time she made negative vocalizations during a bite. These behaviors made mealtime a stressful and negative experience for all family members. By discharge, this child was eating an average of 1042 calories per treatment day, accepting 91% of bites offered, and swallowing food effectively 99% of the time. Her negative vocalizations had decreased from 35% to 2%, greatly improving her and her family's enjoyment of mealtime.
Other children demonstrated similar successes, with improvement in the age appropriateness of their eating behavior and the range of foods accepted, increased jaw strength and swallowing ability, decreased in supplemental and/or tube feeding, and decreased family burden as feeding behaviors and success improved.
Problems. Although all participants viewed the teleconferencing positively, some problems did occur. Scheduling was an issue for remote site health care providers, as they often had to travel to a location separate from their primary office. Technical difficulties with the teleconference connection were experienced in several instances, resulting in at least brief interruptions in the flow of the conference as the two sites had to be reconnected.
The Agency for Health care Quality and Research (AHQR) and the American Academy of Pediatrics (AAP) Center for Child Health Research sponsored a meeting in September 2000 and concluded that pediatric research using information technology needs to address certain topics. Among the issues discussed, AHQR placed emphasis on using telemedicine to increase the availability of pediatric health care and improve the medical assessment of children, while taking into consideration the children's needs. Shiffman, Spooner, Kwiatkowski, and Brennan (2001) emphasize that the research also should give attention to the expense and effectiveness of the technology used. The current project addresses just these issues, demonstrating that for the low incidence population of children with severe feeding disorders, teleconferencing can improve access to specialty services and improve the clinical outcomes of these children.
What's next for teleconferencing for children with complex feeding disorders? In all likelihood, the next leaps to be expected include expanding teleconferencing into more health care providers' offices, rural communities, and schools (Whitten, Cook, Shaw, Ermer, & Goodwin, 1998), enhancing the use of teleconferencing to train professionals at a distance, and improving the reimbursement picture for teleconferencing when it occurs across state lines (Lobe, 2004). For specialty programs, such as the treatment of complex feeding disorders, it is a disservice to develop a high-intensity, low-volume program for every metropolitan community. A better use of health care resources is to share the knowledge via the rapidly expanding technology options available today.
Although this pilot project demonstrates that teleconferencing can be used effectively to improve medical care and reduce family burden, the issues of funding telemedicine have yet to be adequately addressed (Farmer & Muhlenbruck, 2001). This barrier remains. The current pilot project, like other inter-state telemedicine applications to date, was externally funded. Federal guidelines for payment across state lines are needed to facilitate the availability of this modality in the future as it becomes more commonplace and funding sources become less available.
In conclusion, relatively few children in any one health care provider's office or community will require specialty care for complex feeding disorders. Those who need specialty care that is unavailable in their community often continue for long periods on tube feedings. More intensive specialized intervention can enable these children to progress in their feeding capabilities. The availability of a teleconferencing option for screening and follow-up care enables community-based pediatricians to provide comprehensive care, and to maintain excellent communication and follow up when treatment at a distant specialty program is required.
Acknowledgment. The support of Nordstrom in funding equipment purchase and clinician time during this project is gratefully acknowledged.
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Betsy Clawson, MS, PhD, LCP, is a Behavioral Coordinator, the Children's Hospital, Richmond, VA.
Martha Selden, PT, is Program Manager, the Children's Hospital, Richmond, VA.
Mandy Lacks. is a Feeding Technician, the Children's Hospital, Richmond, VA.
Ann V. Deaton, PhD, is a Faculty Member, the Children's Hospital, Richmond, VA.
Brian Hall, MCP, is a Network Administrator at Children's Hospital, the Children's Hospital, Richmond, VA.
Robert Bach, BA, is a Research Assistant, the Children's Hospital, Richmond, VA.
Table 1. Goals of Teleconferencing Goal 1: Provide a resource to community-based physicians to provide necessary care after local resources have been exhausted. Goal 2: Provide sufficient information to recommend the next steps in the child's feeding treatment, whether community-based or center-based. Goal 3: Minimize costs for families. Goal 4: Maximize generalization and effective medical follow up in the patient's home community. Goal 5: Ensure that the treatment team is comfortable with the availability of adequate clinical information and the technology of teleconferencing. Goal 6: Ensure that families are adequately informed about what to expect from the teleconference, both the format of the conference and the range of possible outcomes resulting from the teleconference. Goal 7: Maximize the efficiency and effectiveness of treatment teams at both sites of the teleconference. Goal 8: Have adequate information on the basis of a teleconference consultation to justify authorization by the insurer of the next steps of care needed. Goal 9: Enable the child to receive effective treatment for feeding disorders as soon as I possible. Table 2. Participants' Remote Locations Location n Colorado Indiana 1 Maine 1 Minnesota 1 Missouri 1 Nebraska 1 Nevada 1 New York 2 Oklahoma 1 Texas 1 West Virginia 1 England 1 Table 3. Parent Ratings of Satisfaction with Teleconferencing Experience and Likelihood of Using Again Satisfaction Comfort Communication Would Use Again Initial visit n=12 4.4 4 3.8 12 of 12 Follow-up n=3 4.7 4.7 5 3 of 3