Home   |   Donate   |   Industry   |   Print Page   |   Your Cart   |   Sign In   |   Join Now
Keyword Search
Use of Telemedicine with HPN Consumers
Share |

Use of Telemedicine with HPN Consumers:


Jaime Mortimer, BA, RBT, OTS; Carol Smith, PhD, RN; Marilyn Werkowitch, BSN1; Donna Yadrich, MPA, BS; Noreen Thompson, MSN, RN; and Eve-Lynn Nelson, PhD, LP, FATA

This is a brief review of the equipment and processes we have found essential to our effective use of telehealth (also referred to as telemedicine) distance health care across our two decades of clinical trials, supported by the National Institutes of Health (NIH), with families managing home parenteral nutrition (HPN). The authors are research nurses, therapists, counselors, or telemedicine and telehealth technical experts at the University of Kansas Medical Center.

Our telehealth research interactions between HPN consumers in their homes and multidisciplinary professionals in their offices have tested clinical visual observations; individual and group psychological support; and information-sharing on relevant guidance of HPN procedures following guidelines. The various telehealth delivery systems used across our clinical trials and the technical lessons learned are summarized herein.

All HPN consumers and their significant others in each of our pilot studies or clinical trials gave their consent to participate. All our telehealth communications and any needed internet data plans were delivered via encrypted firewall-protected interactions for privacy, at no cost to participants.

Telehealth Technology

 A split screen image of clinicians using Zoom software
for video and audio conferencing.Courtest of KU Center

for Telemedicine & Telehealth

Telehealth (or telemedicine) is health-care services remotely delivered via telecommunications technologies, including videoconferencing, imaging, and internet websites. Recently, computer tablets, such as iPads, or cell phones with wire or wireless internet connections are being used for audio-visual exchanges. The U.S. Department of Health and Human Services defines telehealth as “the use of electronic information and telecommunications technologies to support and promote long-distance clinical health care, patient and professional health-related education, public health and health administration” (www.healthit.gov/telehealth, accessed 5/1/18). Systematic reviews of the telehealth studies conducted across the United States, Europe, Canada, and Australia report consistently improved health services and increased access to specialists in rural areas. The majority of hospital-based telemedicine studies have focused on diagnostic accuracy, clinical decisions, and improving clinical outcomes. There are similar results in home-based telemedicine reports. Randomized clinical trials have shown benefits of the telehealth and internet information for HPN consumers’ health status. Beyond providing clinicians the opportunity to “see” and “talk” to patients who are geographically far away (and vice versa), telehealth benefits clinical care in the areas of symptom monitoring and disease management, as well as patient teaching, counseling, and social support.



Telehealth equipment ranges from large in-clinic video-screens to home computers, mobile tablets, and cell phones. The earliest “visual” equipment our research team used was a small box called a “videophone.” It plugged into a telephone wall jack and included a one-piece flip top with a four-inch color high-resolution screen and a built-in speaker. The device allowed two-way audiovisuals, so the nurse and patient (the HPN consumer) could see each other at the same time. No additional software or service provider was required; the consumer just had to plug in the videophone and use it.

An HPN consumer in the study would place the small videophone eight to twelve inches away from him- or herself while conducting his or her daily HPN infusion procedures. In this way, the nurse was able to clearly observe the consumer performing handwashing procedures, cleaning the skin around their HPN catheter site, and maintaining sterility of infusion connections and hubs.

This visual assessment has been advanced with the latest zoom-lens technology. In our later studies using these technologies with consumers’ permission, professionals have verified being able to visually observe consumers, verbally guide HPN infusion procedures, encourage family interaction, and offer group peer support.

As electronic communication devices have become mobile in recent years (as mentioned earlier, with small computer tablets and cell phones), telehealth is now being delivered through encrypted internet services. Multidisciplinary professionals can actively assist HPN consumers in problem-solving discussions to help them resolve everyday issues that could impede or preclude effective HPN self-management. Further, we have engaged younger HPN populations in using health-related computer games or applications (apps) for practicing skills from handwashing techniques to identifying signs of depression and building resilience.

In these later clinical trials, more advanced technology was used. Multidisciplinary collaboration with telehealth experts in selecting electronic devices is crucial, because these technologies change rapidly.

Through our secure mHealth (mobile health) tools, HPN consumers were able to report their symptoms at the onset of the symptoms, while health-care providers were able to complete visual and auditory physical examinations to assess critical patient problems. mHealth and mobile tablets were used in our studies in the following ways by HPN consumers in their HPN infusion care: (1) using the mobile tablet camera to connect to their infusion provider during daily HPN care; (2) connecting to the Oley Foundation; (3) using apps to track supplies, medications, and their daily urinary and ostomy fluids; (4) using apps to monitor and record weekly laboratory values; (5) emailing to communicate with supportive peers; and (6) watching educational videos or movies.

Patient-centered Discussion Processes

Clinic appointments via telehealth incorporate unique discussion opportunities between an individual nurse or physician from his or her office and a patient from home. Alternatively, there can be groups of patients, each from his or her own home, with multidisciplinary health professionals, each from his or her own office, with everyone gathered into a single telehealth video conference. In our studies, each participant sees a computer (or tablet) screen split into boxes showing each person, enhancing learning and social support. In our research, we found a correlation between audiovisual exchanges with peers and participants’ greater health-care knowledge and self-efficacy.

Professionals must use important skills in facilitating these groups during telehealth interactions. The facilitator began each group clinic session with introductions of the professional staff, patients, and patients’ family members or friends. Participants, by national regulation, were reminded that personal health information is protected and patients are not required to share any of their private health information during these group discussions. All participants were cautioned to keep all shared information confidential, and patients and family members were cautioned never to share any medical advice with anyone, as their own case is unique and is likely treated differently from others.

Rarely, negative behaviors, such as interrupting, advice giving, divulging inappropriate personal information, resistance to what is said, close-ended questions, and monopolizing group discussions, needed to be discussed. Patients shared their trial-and-error experiences; some of these required clarification by multidisciplinary team members as to whether individually reported care approaches were safe.
Our group discussion intervention was designed to support patients in their HPN self-management skills through group discussions. We reference the Oley Foundation’s HPN complication chart, which lists common signs and symptoms of complications associated with HPN treatment. This chart was discussed to facilitate early recognition and prompt reporting of symptoms by consumers to their health-care professionals. [Editor’s note: the HPN complication chart is currently under revision and unavailable.] Input from these multidisciplinary professionals provided oversight to correct any misinformation and to reinforce important principles of home care.

Participants in the discussions were encouraged to contribute, to ask questions, and to even disagree with one other, in a respectful manner. Group processes encouraged engagement such as sharing personal experiences, using humor, and peer support. Discussions also supported “optimistic talk,” which included consumer statements of positive thoughts, healthy behaviors, and HPN self-management (i.e., “I can do this”).


Results across the studies showed that patients were able to easily set up and use each type of telemedicine equipment used. Our research team believes this ease of use resulted from the clearly illustrated instructions provided by our telehealth department. Also, our telehealth technicians were readily available to answer questions and provide support, which participants said they appreciated. We did note as the technology became more advanced across our two decades of study, more of the participants had previous experience with these devices.

In each study, participants completed an anonymous satisfaction survey about telemedicine services. Patients and family members gave the services positive ratings overall (4.4 out of 5). The survey results included positive reports of ease of telehealth equipment use, lack of intrusion, and no loss of privacy. Ratings by patients indicated that the individual videophone visits and the group telehealth visits were positively compared to in-home nurse visits.

Across studies, patients universally noted the convenience of having the mobile devices mailed to them, reduction in travel requirements and costs, and being comfortable having their appointment via telehealth versus in-person. When answering a multiple-choice question about rating the telehealth quality of care, the majority chose “as if I had seen the professionals in person.” Only 16.7 percent of participants agreed with the rating “I would have preferred to see the health care professionals in person.” The majority indicated that without the telehealth, ‘‘seeing my health care team together would be difficult.’’

Reports in the early 2000s from professionals indicated some using telehealth preferred seeing patients in person. All of our telehealth research professionals since 2002 were asked to complete a satisfaction survey and results were compared. Across all the nurses, most indicated agreement with the statement, “I was comfortable with the therapeutic relationship the patient and I had developed over the telemedicine visits” (4.9 out of 5). The study nurses were also satisfied with the telemedicine visits and agreed they were adequate for obtaining patients’ current health status, medication, and important home management education.

Nurses also found observing HPN procedures compared favorably to in-person visits. However, the touch and smell senses, which can be informative to professionals, are lost through telehealth visits, and nurses and physicians cautioned that assessing the IV exit site appearance was a challenge if the camera of the telehealth equipment could not zoom in.

Data from our telehealth group discussions (N=50) conducted to date finds a high level of active participation. The multidisciplinary professionals were described by consumers and families as responding effectively to questions and issues relevant to their specialty. The HPN self-management discussion topics raised by patient and family participants were recorded and classified into three main themes. These themes are: (1) problem identification; (2) problem-solving; and (3) supportive interaction. These themes reflect important aspects of everyday HPN home care.

Future Telehealth

Several current telehealth technology studies are directed at ways to improve health behavior and treatment adherence by prompting what actions people take daily, including medication compliance and supportive health care reminders. The outcome of these studies will help direct the future of telehealth.

The effects of telehealth on emotional or economic outcomes and health professionals’ practice need further research studies. Future research should determine if a better source of lighting and microscopic zoom lens could assist in assessing small visual details. Further, the impact on the relationship between the patients and their health-care providers should be studied. In a variety of clinical settings, telehealth technology has been found to enhance the efficiency and cost-effectiveness of clinical care.

Current Telehealth Options

HPN consumers and caregivers are encouraged to talk to their health-care teams about the telemedicine options offered or recommended through the health-care clinic. In making decisions around telemedicine providers, some questions consumers should keep in mind include: access to the credentials, qualifications, and licensing of the telemedicine provider and/or team; information and informed consent about telemedicine services, model of care, and risks/benefits associated with the service; information about reimbursement and out-of-pocket expenses; information about telemedicine provider care coordination with existing providers and discussion of plans in the event of emergent patient situations; discussion of security and privacy, including records and documentation; information about the telemedicine process (e.g., scheduling, follow-up, between-session contact); and access to information about the telehealth organization or company and any commercial affiliation(s) with related services or products (see Luxton, Nelson, and Maheu, A Practitioner’s Guide to Telemental Health: How to Conduct Legal, Ethical, and Evidence-Based Telepractice, 2016).

The federally funded Telehealth Resource Centers can also share region-specific resources regarding telehealth providers and broader telehealth resources. More information is at www.telehealthresourcecenter.org. Under the Health Resources and Services Administration (HRSA) guidance, the Consortium of Telehealth Resource Centers is developing Telehealth Connect, a web-based registry of telehealth provider sites (see www.vnghr.org/beta_telehealthconnect).

Acknowledgments and Funding Sources

We are grateful for the years of encouragement and support from the Oley Foundation and for all the home parenteral nutrition (HPN) consumers, their families, and friends who have participated in testing telehealth research. These studies have provided data that has led insurers to cover the costs of telehealth appointments among multiple professionals and consumers. We are pleased to have support of these studies from the NIH. References are available upon request.

Join the ongoing iPad study for young consumers of HPN and their significant others at https://redcap.kumc.edu/surveys/?s=XWJ9HWM48D

May/June LifelineLetter, 2018


more Calendar

Delmar NY Tube Feeding/TPN Support Group for Patients & Caregivers

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
Membership Management Software Powered by YourMembership  ::  Legal