Improving Transplant Outcomes Through Teaching and Technology

Improving Transplant Outcomes Through Teaching and Technology

Victoria L. Shieck, RN, BSN, CCTN

University of Michigan Health System Transplant Center, Ann Arbor, Michigan

Even the most effective of immunosuppressive therapies can be rendered useless if patients do not remember to take the medication as prescribed and on schedule. Issues with health literacy pose the greatest problem for medication adherence. A commonsense approach to patient communication and education can make a huge difference in graft (and, by extension, patient) survival post transplant. Websites, text messaging, and smartphone and tablet “apps” are becoming invaluable assets for screening prospective organ donors, prompting transplant recipients to adhere to their therapy, and educating patients and caregivers about the organ transplant process.

Ms. Shieck Let’s face it—technology is here to stay. We “baby boomers” have a tough time keeping up with constant technical developments and new technologies. Each week, we are faced with the challenge of figuring out what smartphone, tablet, or personal computer and the software that runs on them would be best suited to aid our everyday life. We now must decide how best to use new technologies to communicate with and educate our patients.

At the 2013 American Transplant Congress, these issues were addressed during two sessions: “Improving Transplant Outcomes through Teaching and Technology” and “Apps, Web, and Wi-Fi Pill Bottles: Emerging Technologies in Transplantation.”

OVERCOMING HEALTH LITERACY IMPEDIMENTS TO MEDICATION ADHERENCE
Based on a presentation by Cynthia K. Russell, PhD, RN, ANP, Professor of Nursing, College of Nursing, The University of Tennessee Health Science Center, Memphis, Tennessee.

According to results from the 2011 National Assessment of Education Progress Reading Test (NAEP),1 an average of 39% of all fourth graders in the United States scored “below proficient,” meaning they were not reading at grade level. In addition, only 74% of 12th graders read at or above grade level.2 Healthcare professionals are concerned about one clear fact—medication nonadherence is related to health literacy.3

Age, Literacy, and Adherence
Baker and colleagues4 used the Short Test of Functional Health Literacy in Adults (S-TOFHLA; range, 0–100) and the Mini Mental State Examination (MMSE) to study functional health literacy among community-dwelling older people. S-TOFHLA scores fell by an average of 1.4 points for every year increase in age. Differences in the frequency of newspaper reading, visual acuity, health, and chronic medical conditions offered no explanation for the lower literacy among the elderly. Below-average literacy occurs more often among the elderly to the point that some senior citizens cannot even circle the appointment date on a checkout sheet.

The scope of this problem is astounding. According to the 1993 National Adult Literacy Survey,5 over 40 million adults in the United States did not have the basic reading skills needed to function in society to the fullest extent, and 50 million more Americans had mediocre reading skills. A depressed literacy level keeps patients from taking an active role in their own healthcare decisions and treatment.6

The Challenges of Illiteracy
Baker and colleagues7 used the Test of Functional Health Literacy Assessment to link literacy and health outcomes among 979 emergency department patients taking part in the Literacy in Health Care study. Of these patients, 958 had an electronic medical record for 1994 and 1995. In all, 53% had adequate literacy, 13% had marginal functional health literacy, and 35% had inadequate literacy. Patients with low literacy had worse health, higher hospitalization rates, and inflated healthcare expenditures when compared with adequately literate patients.

Patients with limited reading skills also have a difficult time navigating the labyrinth of healthcare services. Baker and others8 found that such individuals cannot understand signs and registration forms and are at risk of making serious errors when taking medication. Thus, they tend to rely greatly on visual clues, oral explanations, and physical explanations to learn about medical issues and depend upon friends or family members to be surrogate readers. Because patients with low literacy may be ashamed of their inability to process written materials, they may be hesitant to discuss the problem with the healthcare professionals caring for them.

Health literacy problems for patients and their families are complicated by educational material written at an advanced reading level and the technical vocabulary used by healthcare providers. The average patient education materials distributed are written at a 10th-grade reading level or higher, even though most adults read at an eighth- to ninth-grade level.5 This situation becomes even more dire when a patient’s primary language is not English.9 At two public hospitals, Williams et al10 found fair-to-poor health literacy among 35% of patients who spoke English and 62% of those who spoke Spanish.

Further, there are times when we ask patients or family members to calculate medication changes, although they are unable to understand routine laboratory or procedure results or even oral instructions. The average patient functions at about a fourth-grade level, so written or spoken healthcare instructions should target a third-grade reading level. In other words, keep it simple, and use visual, oral, and written materials to share information with your patients.

Helping Patients to Help Themselves
Our complicated transplant medication schedules can be difficult for patients and families to follow and can lead to nonadherence.11 Adherence to drug regimens extends beyond simple compliance with medication schedules and also involves such health behaviors as alcohol consumption, diet, exercise, and smoking.11 However, close attention to drug schedules is tremendously important.

MedActionPlan. Several methods may help patients understand and take their medications as directed by their transplant team. The first one is use of MedActionPlan.

MedActionPlan is a group of online programs that allow a transplant coordinator to enter the medication’s name, dose, and frequency into the patient’s medication plan. Some practitioners list the most important medications, such as immunosuppressants, antihypertensive agents, or antibiotics, first and then include other routinely used medications. The program provides a description and/or indication for each medication and, where possible, a photo. However, photographs of pills are not available for all of the medications a patient may be taking and, especially, generic medications.

After all of the information is entered, the coordinator can print out the medication schedule and a check-off sheet. Use of this tool for new and old transplant recipients has improved their understanding and ability to follow their difficult medication schedule.

Medication stickers. Another method for helping patients and families with literacy problems is the use of medication stickers placed next to the dosing schedule. Such stickers may be ordered from the International Transplant Nurses Society online store (http://apps.itns.org/Store/ProductDetails.aspx?productId=89) or by calling Member Services at (847) 375-6340. Because many individuals have reading disabilities and cannot read even at a first-grade level, they may be aided by having colored stickers affixed to a medication sheet and on the medication bottle. Many pharmacies will put the same colored stickers on the refill bottles upon request.

FIGURE 1 

Syringe printouts. Teaching pediatric patients to draw up liquid medications is both important and difficult—especially if the child’s caregiver cannot read. Many hospitals have syringe printouts available to nurses to distribute to patients (Figure 1). A healthcare professional writes the name of the medication and the dose (in milliliters) at the top of the page; the syringe drawing is then colored with the volume to be administered. Parents with literacy problems match the first letters of the names of the color-coded drugs to the syringe patient handout. The handouts are updated with each medication change. When changes in a medication dose are required, a local pharmacist can help with the dose change.

Summary
All caregivers deal with health literacy. Treatment may be easier for illiterate patients if written materials and spoken instructions are easily understood, words used to educate remain simple, and different teaching methods are used for patients and families. For example, when teaching patients, healthcare professionals should use the words “anti-rejection pills,” not “immunosuppressants.” Further, they should couple oral instructions with visual aids and handouts for patients and their families. Healthcare personnel must reinforce patient care instructions again and again with each clinic visit. The more medication instructions are taught and reinforced, the greater the chance that patients will adhere to their treatment regimens.

TEXTING AS A STRATEGY TO IMPROVE OUTCOMES POST TRANSPLANT
Based on a presentation by Tamir A. Miloh, MD, Department of Gastroenterology, Phoenix Children’s Hospital, Phoenix, Arizona.

Most cell phone owners can send and receive text messages. We baby boomers may not always be as proficient at texting as are our teenaged patients, but we can hold our own with today’s technology. For many adults in society today, the only way to communicate with their own kids is by sending them a text.

Adolescent patient outcomes may be improved if a texting strategy is used. Following transplantation, adolescents have the highest incidence of therapeutic nonadherence and potential graft loss among all age groups. A main reason for noncompliance among teenagers is that they are “too busy” to remember to take their medications or that they “just forgot.” For the most part, healthcare providers have heard it all from these young patients.

Miloh and others12 designed a program that uses cell phone texting to help remind adolescent transplant recipients to take their medication on schedule. The teens receive a text from their hospitals reminding them to take their medications. After the drug has been taken, the adolescents text back to the computers. If the computers don’t receive a text within a certain period, the teens’ parents or guardians receive a phone call to remind the adolescents to take their medications.

To date, this practice has effectively enhanced medication adherence, according to Dr. Miloh. Among its limitations, however, is that not all families can afford a cell phone with texting ability or have a hospital system that can send out multiple texts to their patients. But compared with the cost of treating a rejection episode and associated complications, using technology to reduce the incidence of nonadherence to immunosuppressants is priceless.

USING THE WEB TO EVALUATE LIVING KIDNEY DONORS
Based on a presentation by Deonna Moore, MSN, ACNP-BC, Lead Nurse Practitioner, Kidney/Pancreas Transplant Program, Vanderbilt University Medical Center, Nashville, Tennessee.

I am as guilty as the next person of surfing the Internet looking for sales items or sports scores. But we all know that the Web can be a much more valuable place. Transplant coordinators at the Vanderbilt University Medical Center in Nashville, Tennessee, have developed a Web-based program to improve living kidney donor recruitment.13

Before the program was activated, the average transplant coordinator spent long hours conducting telephone interviews with potential kidney donors; in many cases, however, the medical histories of the potential donors precluded them from donating organs. To meet this challenge, an online donor evaluation program was created to allow potential kidney donors to add their own medical information into the system (www.vanderbilthealth.com/transplant). Potential donors can complete the online survey in approximately 2½ minutes. Those meeting the qualification receive a call from a transplant coordinator by the next business day. If they do not meet the minimal qualifications, they receive an e-mail informing them why they are not potential candidates.

Since this Web-based program was implemented, 72% of potential kidney donors at the facility are using it, and, most surprisingly, individuals visit the website at times other than during average business hours. The advantages of this program include decreased cost for employee time on the telephone, immediate workup of potential donors who have already been screened, and provision of immediate results to the potential donor and good data on all referrals to the transplant center. Future implications for this program include the availability of a recipient referral program, distribution of patient and family educational materials, and maintenance of long-term follow-up with donors after transplant surgery is accomplished.

DEVELOPING APPS TO IMPROVE TRANSPLANT OUTCOMES
Based on a presentation by Marc L. Melcher, MD, Assistant Professor of Surgery, Stanford University School of Medicine, Stanford, California.

Currently, there are three main types of cell phones and tablets: the very popular (but expensive) iPhone and iPad created by Apple, cell phones and tablets built on Google’s Android operating system, and cell phones like Nokia’s and tablets that use Windows 8. Each of these types competes with the others for the consumer’s dollar and loyalty. When you add on applications (“apps”), or mini-programs, that give these cell phones and tablets their functionality (aside from making or answering a phone call), the fun is just beginning, because apps developed for one type of smartphone or tablet won’t work on another type unless they are reengineered. Although the exact number of apps currently available is unknown, they number in the hundreds of thousands. Almost none of them is targeted to the needs of transplant physicians, nurses, or nurse coordinators, and even fewer are intended to assist in the care of transplant recipients.

Among the barriers to developing a smartphone or tablet app for use by the transplant community and patients are compliance with the Health Insurance Portability and Accountability Act (HIPAA) of 1996, the proprietary structure of the phones’ and tablets’ operating systems, and the small market needs for specific apps. A few of the apps presently available for transplant physicians are tools for calculating a Kidney, Pancreas, or Liver Donor Risk Index to estimate the risk of graft failure post transplant; a Model for End-Stage Liver Disease (MELD) calculator; and the Hepatocellular Carcinoma MELD Exception (http://transplanttools.com).

Problems with Apps
Pitfalls associated with the use of smartphone or tablet apps include calculation error and limited accuracy. The sale and use of apps require no US Food and Drug Administration oversight or peer review, so the app developer could be open to some liability. The ideal function for transplant apps would include supplying a focused solution to a given problem (for example, calculating a MELD score), allowing access to data and non-HIPAA data entry, and providing patient education. One example of the latter is the Augmented Reality Liver Viewer (www.iso-form.com/apps/ARLiver/), a three-dimensional tool to teach patients about the liver and its function.

Apps represent the future of telemedicine and the potential to enhance communication between healthcare providers in the transplant community and patients. One recent example is a free mobile app called Mobile Transplant Professional (https://play.google.com/store/apps/details?id=com.itsc.transplantpro), developed at the University of Alabama in Huntsville (www.itsc.uah.edu/node/1097). It allows transplant professionals to collaborate with their colleagues on complex problems unique to transplantation and provides information about recent publications and news developments. For those of us in the transplant community, the field is in its infancy but is certainly worth watching.

CONCLUSION
The transplant professional is faced with the ongoing problem of health literacy when caring for patients. Changing patient and family education processes and keeping reading materials at an elementary-school level of understanding may reduce short- and long-term complications related to organ transplant. New technology that includes texting, apps, and Web-based programs can enhance patient care and adherence to medication. Future technologic strides will transform medical practice and, likewise, organ transplantation as we know it.

REFERENCES

  1. National Center for Education Statistics. The Nation’s Report Card: Reading 2011. (NCES 2012–457). Washington, DC: National Center for Education Statistics, Institute of Education Sciences, US Department of Education; 2011. http://nces.ed.gov/nationsreportcard/pdf/main2011/2012457.pdf. Accessed June 11, 2013.
  2. National Center for Education Statistics. The Nation’s Report Card: Reading 2009 (NCES 2010–458). Washington, DC: Institute of Education Sciences, US Department of Education, National Center for Education Statistics; 2010. http://nationsreportcard.gov/reading_2009/. Accessed June 11, 2013.
  3. Lindquist LA, Go L, Fleisher J, Jain N, Friesema E, Baker DW. Relationship of health literacy to intentional and unintentional non-adherence of hospital discharge medications. J Gen Intern Med. 2012;27:173–178.
  4. Baker DW, Gazmararian JA, Sudano J, Patterson M. The association between age and health literacy among elderly persons. J Gerontol B Psychol Sci Soc Sci. 2000;55:S368–S374.
  5. Kirsch IS, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC: US Department of Education, National Center for Education Statistics; 1993.
  6. Miles S, Davis T. Patients who can’t read: implications for the health care system. JAMA. 1995;274:1719–1720.
  7. Baker DW, Parker RM, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med. 1998;13:791–798.
  8. Baker DW, Parker RM, Williams MV, et al. The health care experience of patients with low literacy. Arch Fam Med. 1996;5:329–334.
  9. Nielsen-Bohlman L, Panzer AM, Hamlin B, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: Institute of Medicine; April 2004. http://www.iom.edu/Reports/2004/Health-Literacy-A-Prescription-to-End-Confusion.aspx. Accessed June 11, 2013.
  10. Williams MV, Parker RM, Baker DW, et al. Inadequate functional health literacy among patients at two public hospitals. JAMA. 1995;274:1677–1682.
  11. Fine RN, Becker Y, De Geest S, et al. Meeting report: nonadherence consensus conference summary report. Am J Transplant. 2009;2:35–41.
  12. Miloh T. Text4Health: texting as a strategy to improve outcomes post-transplant. Presented at the 2013 American Transplant Congress; May 18–22, 2013; Seattle, Washington. Abstract MD06b.
  13. Moore D. Emerging technologies in transplantation: web. Presented at the 2013 American Transplant Congress; May 18–22, 2013; Seattle, Washington. Abstract B1018.

Ms. Shieck is a Clinical Care Coordinator at the University of Michigan Health System Transplant Center, Ann Arbor, Michigan.

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