Mentors Help Patients with Rehab and Offer Insider Tips Along the Way

Written by Laura Landro, Wall Street Journal

Tony Grieb helps Andrew O’Regan through exercises to help recover after his knee replacement at Anne Arundel Medical Center in Annapolis, Md. Mr. Grieb, a peer-mentor who also has had knee replacement surgery, knows how far to push, and sticks with Mr. O’Regan during his entire session when the therapist may be busy with other patients. PHOTO: WES FOX/ANNE ARUNDEL MEDICAL CENTER

Patients are getting help from experts with no medical degrees but plenty of know-how: fellow patients who have faced the same health challenges.

Health-care providers are recruiting and training former patients to act as coaches for the newly diagnosed and treated. In addition to putting extra hands on deck for relatively little cost, these mentor programs offer patients a more personal touch than the traditional support group or online chat forum. For volunteers, mentoring can be more rewarding and hands-on than handing out magazines or manning an information booth.

For chronic conditions, mentors serve as role models for following complex self-management regimens, and provide empathy and understanding when patients struggle. Studies show that peer mentors can help diabetes patients keep blood sugar under control and improve their quality of life. They also help kidney disease patients cope with the rigors of life-sustaining dialysis treatments multiple times a week.

Mentors can also help with shorter-term issues such as joint replacement, both before and after surgery. They give patients an idea of what to expect, lend encouragement during physical rehabilitation and share their own experiences with recovery—often providing a unique perspective that medical professionals can’t.

“We have all these nurses and surgeons who haven’t actually had a knee or hip replacement and don’t know firsthand what it is like,” says orthopedic surgeon Paul King, director of the Center for Joint Replacement at Anne Arundel Medical Center in Annapolis, Md., which uses peer mentors for patients including those who have had joint replacements, breast cancer and stroke. “People who have been through it are the best resource to provide support and help patients see beyond the initial pain to the result.”

Anne Arundel trains mentors on do’s and don’ts, such as refraining from giving medical advice or pushing patients beyond what the physical therapist has prescribed, says nurse Juli Pastrana, program coordinator.

Andrew O’Regan, 51, had his right knee replaced last February after a fall from a ladder while he was working for his caulking and waterproofing company. When he started group physical therapy in March, he met peer mentor Tony Grieb, 64, who had both his knees replaced five years ago. Mr. Grieb volunteered for peer mentoring last year after retiring from a government IT systems career.

The physical therapists are often busy with other patients, so Mr. Grieb stands by to offer encouragement and tips, as well as helping with heat and ice at the end of therapy. “He makes sure we aren’t messing around and we are doing what we are supposed to be doing properly,” says Mr. O’Regan, who will continue therapy three times a week for the next four to six weeks.

Mr. Grieb helped Mr. O’Regan understand what to expect. While they may chat about other things, “it isn’t a social hour,” Mr. O’Regan says. “Basically, he stays pretty focused on getting us better and prepared for what life is like with a reconstructed knee.” Mr. Grieb says patients sometimes assume the surgery will instantly resolve pain and walking trouble, and “I try to be a cheerleader and keep people from being discouraged that they are not bending as fast as the guy next to them.”

Judy Crane, who had a stroke 10 years ago during heart surgery at age 47, initially participated in a support group at Anne Arundel, and then helped launch a stroke mentor program there last year called Power of 2. The program matches recent stroke patients with trained survivors. Mentors share information, encourage participation in rehabilitation and help relieve anxiety, Ms. Crane says, often simply by saying, “I’ve been in your shoes and I understand how you are feeling, and I am standing in front of you to tell you there is life after stroke.”

Mentors can learn about volunteering through local hospitals and nonprofit disease groups such as the National Kidney Foundation and the American Diabetes Association. The Christopher & Dana Reeve Foundation, founded by the late actor who was paralyzed in a spinal cord injury and his wife, trains and certifies peer mentors for patients with spinal cord injuries. It has 27 partnerships that include hospitals and rehabilitation centers. For health providers who want to start or expand programs, the nonprofit Institute for Patient-and Family-Centered Care sponsors online seminars. Another nonprofit, Peers for Progress, a program of the American Academy of Family Physicians Foundation, recently issued a new guide for the development of peer mentor programs.

The University of Michigan Health System, which offers several peer mentor programs, is developing a training tool kit that can be adapted to establish peer mentor programs for any medical condition. Celeste Castillo Lee, program manager for patient and family centered care, says the goal is to harness the wisdom of patients dealing with chronic illness and “leverage them to be part of the care team.”

Erica Perry, a retired social worker who developed peer mentoring programs for kidney dialysis in the 1980s and now consults for Ms. Lee’s programs, says that in the past there was resistance by medical staff who felt that mentors might give erroneous medical information or usurp their role in managing patients. But that has changed with a more patient-centered focus in health care, and many patients and families now cite peer mentors as the most helpful person in their effort “to stay in the driver’s seat throughout the journey of kidney disease.”

Some health systems, disease advocacy groups and insurers are turning to online programs to train and match patients with appropriate mentors by such factors as age, gender and race. River Edge, N.J.-based InquisitHealth is working with researchers on federally-funded grants to develop online peer mentor training and management systems for asthma, diabetes and HIV that could be used to train and manage paid mentors as well as volunteers.

Judith Long, associate professor of medicine at the University of Pennsylvania and co-investigator on the grant for diabetes management, was lead investigator on a 2012 study in the Annals of Internal Medicine, which found that peer mentorship improved blood sugar control in African-American veterans with diabetes, compared with both veterans who had no peer mentor and veterans who were offered a cash incentive to lower levels. The six-month-long study evaluated 118 patients randomly assigned to the three groups.

Mentors don’t always have to be model patients, according to Dr. Long. In fact it may be easier for new patients to relate to those who still struggle with their blood sugar control and other issues. Being a mentor “can be good for your own health, by making you feel more responsible to succeed” says Dr. Long.

Write to Laura Landro at laura.landro@wsj.com