Transplant mentors help patients comply with regimen

Noncompliance with antirejection drug regimens is the cause of many transplant failures each year. To help transplant patients prepare for their surgery and adhere to their medications, a new mentor program has been established. The program pairs current transplant candidates with former patients as mentors, in an attempt to facilitate transplantation, before and after surgery.

Originally developed by the Consumer Health Information Corp. (CHIC) and Fujisawa Healthcare, maker of Prograf (tacrolimus), the multi-component program trains volunteers as mentors for transplant patients and their families and living donors. Said Dorothy L. Smith, Pharm.D., president of CHIC, "Research shows that transplant patients find it extremely helpful to talk candidly with someone who understands the medical, emotional, and financial concerns."

Former-patient volunteers are selected by transplant coordinators at medical centers participating in the program. Once chosen, recruits undergo an extensive 12-part training program. They learn how to listen, be open-minded, share experience, and refrain from giving medical advice. They are taught to recognize emotional signs or actions that could put the patient's health in jeopardy, and report information back to the transplant team.

"Having the opportunity to communicate with patients who have 'been there' is invaluable," said Sue Ellen Knutson, R.Ph., director of consumer marketing at Fujisawa Healthcare, who helped launch the program in 2003. "The transplant professionals cannot provide this."

Fujisawa's three consumer marketing managers present the program to transplant centers and perform the training in a one-day format. "By the end of 2004, we will have performed 16 training programs in eight transplant centers," Knutson said.

Knutson believes there is tremendous value to the transplant center itself. "What centers learn from the mentors working directly with the patients is used to improve customer service, the transplant evaluation process, and patient outcomes," she said. Additionally, "having patients trained to mentor other patients saves valuable staff time, because this type of communication is very time-consuming."

The mentoring program was acquired in 2002 by Fujisawa, the current supporter of the program. "We made comprehensive revisions to make the program our own and to improve its value to the transplant centers and their patients," said Knutson. "This meant changing the format, rewriting the manuals, and making the entire program more user friendly."

According to Smith, Fujisawa contracted assistance during this process from CHIC for its expertise in clinical therapeutics, training program development, patient education, and health literacy. Together, the two groups determined the basic goals of the mentor program.

Development of the program content required an exhaustive literature search and a thorough understanding of all clinical, psychiatric, counseling, and compliance issues relating to transplant patients. Additionally, "we had to explain these issues in language that was nonfrightening, motivational, and compassionate," said Smith. The training manuals "are written at an average consumer reading level, so volunteers can understand them and apply them effectively," she added.

Mentoring might mean offering emotional and informational support not only to the transplant candidates but to their families or living donors. Volunteers who have participated in the training program "find it very effective in preparing them for their mentoring role," Knutson said. Highly motivated mentors with good communication may later be recommended as trainers.

Mentors are motivated by the important role they can play in helping other transplant patients, and "centers feel that patient recovery is improved due to this type of patient support." This creates a true win-win situation, added Knutson.

As confirmation of the value of its program, CHIC took home the gold at the recent National Health Information Awards. Organized by the Health Information Resource Center, the annual awards program recognizes the best consumer health programs in the country. This is the second year in a row that CHIC has received this honor.