LifeLinks - Long Term Follow-Up Newsletter, Fall 2013
In this Issue
- Message from the Director
- New Director at the Helm of LTFU Program
- Dr. Stephanie Lee
- Boosting Post-Transplant Care: Transitional Transplant Clinic
- Friendly Concierge is Terribly Missed
- FAQ: Resilience Questions Added to This Year’s Survey
- Tell Us What You Think
- Events & Resources
I have passed leadership of the Long-Term Follow-Up (LTFU) Program to Dr. Stephanie Lee, who took over as director July 1.
It has been an honor to lead such a dedicated, incredibly talented staff and to work with inspiring patients who show such resilience in dealing with the harsh misfortunes that life can bring.
You’ll notice a new look to LifeLinks. The newsletter is now produced by Seattle Cancer Care Alliance, which unites doctors from Fred Hutch, UW Medicine, and Seattle Children’s.
Paul J. Martin, MD
Leadership of the LTFU Program and its research efforts passed from Paul J. Martin, MD to Stephanie J. Lee, MD, MPH this summer. Dr. Martin will remain on the LTFU team and focus on duties as medical director of the Clinical Research Support office that oversees clinical trials.
Mary E. D. Flowers, MD, continues as director of LTFU Clinical Service, a role she has held since 2000.
“Much credit for the success of the LTFU under my leadership during the past 14 years should be given to Dr. Mary Flowers for her passionate commitment to clinical care in the program, to Dr. Stephanie Lee for her national and international leadership in studies of chronic graft-versus-host disease [GVHD], to Dr. Jean Sanders and Dr. Paul Carpenter for their outstanding contributions in pediatrics, to Dr. Yoshi Inamoto for his tireless analysis of data, and to Peggy Adams Myers and members of the LTFU staff for excellent clinical and research support,” Dr. Martin says.
Strides in Treating GVHD
“I am excited and honored to follow Paul Martin as the research director of LTFU,” says Dr. Lee, who began working in LTFU in 2006 when she joined the Hutch and Seattle Cancer Care Alliance (SCCA). “LTFU is world-renowned as a research and clinical program that serves an ever increasing number of transplant survivors. Many survivors are doing well, but so many challenges remain. I am committed to continuing the research excellence expected of the Hutch and SCCA so that the health and quality of life of our patients is the best it can be.”
Dr. Martin reflects with pride on the huge gains in understanding the aftereffects of stem cell transplantation, particularly GVHD, since he became director in 1999. Research by Drs. Martin, Lee, Flowers, Inamoto, and Carpenter built on work by the previous LTFU director, Dr. Keith Sullivan, and led to insights about the problems facing patients with GVHD and understanding which treatments work. The LTFU has also launched many clinical trials to discover better approaches to treatment.
Dr. Lee is excited to focus future research on understanding the whys of GVHD. “Why do some people get late effects and others don’t, why are late effects severe in some people and not in others?” she asks. “Studies focused on risk factors and genetics will help us try to prevent these complications.”
As for other changes, Lee says, “LTFU is doing what it needs to do—following our survivors, supporting them, and knowing what’s happening with them. Patients and staff will notice new things but it will be an evolution rather than a dramatic shift.”
Any physician or researcher doing follow-up with people who had transplants must take a long-term view and understand that “transplant leaves a deep footprint on people’s lives,” Dr. Martin says. “Life really never gets fully back to normal. We have a very important role in making our peers understand what that burden is, to give patients warning, and to encourage them to adopt lifestyles that mitigate their risk of aftereffects.”
Although Dr. Martin won’t have a leadership role at LTFU, he will work on long-term follow-up issues related to clinical trials in preparation for the 2014 NIH Consensus Conference on the issue.
Sharing Survivor Stories
In addition to his research contributions, Dr. Martin is proud of his role in sharing LTFU survivors’ stories. When he became director, LTFU overhauled the annual recovery questionnaire and invited people to share comments about their experience. Each year an anthology of comments is sent to patients along with the questionnaire. Past anthologies can be viewed online.
“Our patients are very committed to improving things for the people coming behind them,” Dr. Lee notes. “We appreciate their continued contact with us, completing our surveys, and participating in our studies. We all want to make it better. It’s a real partnership.”
Raised in Seattle, Dr. Lee attended the University of Washington as an undergraduate, followed by Stanford Medical School. She did a hematology-oncology fellowship at the Brigham and Women’s Hospital in Boston and then joined the faculty of the Dana-Farber Cancer Institute. She moved back to Seattle in 2006.
Away from work, Dr. Lee likes to spend time with her husband and two sons, ages eight and 13. She also enjoys reading, traveling, and cooking. “Taking care of people with cancer enriches the rest of your life.”
I look forward to working with our talented team in partnership with our patients to make transplant more effective and safer.
In this issue you’ll find stories about the leader-ship change and our new Transitional Transplant Clinic (TTC) for patients with complex medical issues.
On a sad note, we also say goodbye to Laura Devlin, team coordinator in the LTFU Clinic, who passed away recently of cancer.
In good health,
Stephanie Lee, MD, MPH
With clinical service director, Mary E. D. Flowers, MD at the helm, the LTFU has expanded its scope of services to assist in the hands-on management of patients who develop complex conditions more than 100 days after their stem cell or bone marrow transplant procedure.
Started in September 2012, the Transitional Transplant Clinic (TTC) offers specialized post-transplant care from a dedicated team of SCCA physicians and nurses. The TTC takes pressure off the early post-transplant care teams and referring physicians by providing temporary care for patients with complex medical conditions until they are ready to return to the care of their local oncologists or primary care physicians. The TTC also opens up capacity at SCCA, ensuring that new patients get access to life-saving transplants without delay, and improving the continuity of care for patients with lingering complications.
Caring for Patients After Transplant
Today, the LTFU program has more than 6,000 patients who were transplanted between 100 days and 40 years ago at either the Hutch or SCCA. Most patients who have a bone marrow transplant (BMT) at SCCA initially receive care in a dedicated post-transplant clinic for two to three months and then return to the care of their primary physician. At that point, the LTFU Clinical Program provides telemedicine and onsite clinical consultation to patients and their primary providers.
The LTFU Clinical Program continues to offer its full range of services. “What’s new is that the TTC now fills the gap in continuity of care for the high-acuity patients with complex post-transplant-related problems beyond two to four months after transplantation,” Dr. Flowers says.
Helping Primary Physicians
Even with safer and more effective transplants, some patients will develop severe post-transplant complications that prevent them from being discharged to their primary provider at the expected 100 days after transplant. Other patients who have already been discharged also sometimes experience new or recurrent post-transplant complications that are difficult for a busy oncologist or other primary provider in the community to handle.
These patients are often recipients of allogeneic transplants with GVHD or people with serious or recurrent infections or other medical complications requiring prolonged and frequent clinic visits. Until the TTC opened, these patients would be seen at SCCA’s core clinics, impacting their capacity to treat new transplant patients.
Providing Continuity of Expert Care
Another big reason for creating the TTC was to establish seamless care from a dedicated, expert medical team. Dr. Flowers said the acute post-transplant team’s monthly staff rotation had hampered their ability to provide continuity of care to patients with lingering complications beyond three months after transplant.
“The TTC has solved this problem,” Dr. Flowers says. “It’s another novel aspect of our transplant program here at SCCA.”
The dedicated TTC medical team consists of two attending physicians, Merav Bar, MD, assistant member, Hutchinson Center; Laura S. Connelly-Smith, MBBCh, DM, SCCA staff physician; Dow Dunbar, PA-C; and Joanne Quinn, RN.
To date, 50 patients have received care at the TTC, which is more than originally projected. Approximately half required hospital admissions. The average duration of medical care received by TTC patients is three months.
Growth of Clinical Service
Dr. Flowers has been director of LTFU Clinical Service since 2000 and continues in that role as Dr. Paul Martin steps down as director of the overall LTFU program and its research efforts. “It has been gratifying to see the growth of the clinical services of the LTFU program,” she says, noting the number of patient visits has risen during the last 10 years from 250 to over 600 visits per year. As the LTFU clinical director, Dr. Flowers divides her time between patient care, clinical research, and administration.
Originally from Brazil, Dr. Flowers first came to the Hutch in 1983 for a short fellowship, where she worked with Dr. E. Donnall Thomas, the Nobel Prize winning pioneer of bone marrow transplantation.
LTFU team coordinator, Laura Devlin, wanted everything just right for LTFU patients.
LTFU patients returning to SCCA or follow-up visits will miss the friendly navigator many have relied on for the past five years. Laura, passed away Aug. 6 of cancer at age 45.
“Anyone you talk to will tell you how friendly she was, how bubbly. Everybody loved her,” says Laurell Haapanen, a patient care coordinator who worked with Laura. “She put the L in Long-Term Follow-Up for a lot of people. She is terribly missed.”
Haapanen says Laura’s goal every day was “to make this the best experience we can. She always said, ‘We’re going to find some happiness and joy in a tough situation.’ She did that during her illness as well.” Laura was treated at SCCA.
“Her work ethic was incredible,” Haapanen continues. “No matter what last-minute changes were thrown at her, she rolled with them beautifully. From a coworker’s perspective she was supportive and thoughtful, and I saw patients feel that as well. She’d take the extra time to know what days patients liked to have appointments or whether they had preferences about their blood draws. She was their concierge. She streamlined things so providers could focus on the patients.”
“Laura was a special human being with a beautiful soul,” says Dr. Mary Flowers, LTFU Clinical Service director. “She was a professional of the highest caliber, dedicated to our patients and our medical team. While we miss her very much, she continues through those whom she touched.”
Interviewed for a LifeLinks article before falling ill, Laura said, “I’m usually patients’ main point of contact, the first person they see when they return to SCCA, and my job is to help them navigate the process. I want to please the patients and the LTFU team.” Her job involved scheduling patients, making sure all pertinent tests were ordered and that everything, and everyone, was ready for a patient’s visit.
“Laura always used her professionalism and humor to make an intimidating situation just a little bit better,” recalled David Warren Taylor, support staff supervisor in the Bone Marrow Transplant Clinic. “She left a lasting impression on one patient, who donated one month’s private limo service for her to get to her appointments.”
Her desk was decorated with pictures of her beloved chihuahua, Mr. D, who often rode shotgun when Laura took her Vespa scooter out for a spin, wearing a black-and-white polka-dot helmet. Off the job, Laura played golf and loved to travel. She grew up in Seattle’s Capitol Hill neighborhood, just above SCCA.
Q. Why does part of the adult Patient Recovery Questionnaire change each year?
A. Each year a group of questions covering a specific research topic is added to the Patient Recovery Questionnaire sent to adult patients. The data from these questionnaire “modules” or special studies are collected for one year. The data are then analyzed and used in peer reviewed research on the effects of blood and marrow transplants. Results are reported back to patients in the LifeLinks newsletter.
Q. Why don’t the questionnaires sent to pediatric patients contain the questions for these special studies?
A. Often, the topics of the special study are either not applicable to young children, or they include standard survey questions that have only been shown to be valid in adult populations. We are working with researchers who specialize in pediatrics to solicit ideas for studies appropriate for that population for future questionnaires.
Q. What does the current topic “Resilience after a transplant” mean?
A. Resilience is a term used to describe how well a person copes with a difficult experience, like diagnosis with a life-threatening disease and treatment with a transplant. Researchers studying resilience hope to determine what allows some people to be more resilient so we can help future patients cope better with the transplant and recovery process.
Q. How do the questions in the resilience module help you determine which factors affect resilience?
A. The resilience module is made up of three brief standardized questionnaires that are used to measure quality of life, coping, and the effect of traumatic events. These three questionnaires have been shown to accurately measure these factors in adults. Comparing the data from transplant survivors who respond to the questionnaire can help identify factors that are related to how transplant patients cope. The information from LTFU patients can also be compared to the responses in other studies using these same questions. This will help researchers determine how resilience in transplant survivors compares to other groups.
Please tell us what you would like to see in future issues of LifeLinks.
Your answers to the four questions in our online survey will help us improve the newsletter. Find this survey online at www.surveymonkey.com/s/ZR28PZD.
Webinars on Chronic GVHD
What: BMT InfoNet is offering you the opportunity to learn from experts in the field of GVHD.
- Oct. 3: Skin cGVHD with Dr. Stephanie Lee
- Oct. 10: Ocular cGVHD with Dr. Ryan Ridges
- Oct. 17: Oral cGVHD with Dr. Nat Treister
- Oct. 24: Pulmonary cGVHD with Dr. Ken Cooke
When: Thursdays, starting Sep. 26 through Oct. 24, 4:30 to 5:30 p.m.
Where: You can watch the presentation on your computer and listen through your computer speakers or phone. You can also participate in a question and answer session at the end of the presentation.
Click here for more information and to register.
Support for Patients and Caregivers After Transplant
What: A peer support group for patients and caregivers, facilitated by LTFU nurses. All transplant and returning follow-up patients are welcome. Join us in person or by conference call.
When: Every Thursday, 11:30 a.m. to 12:30 p.m.
Where: Seattle Cancer Care Alliance
825 Eastlake Ave. E., Sixth Floor, Room 23
Seattle, WA 98109
1. Dial 1-641-715-3300.
2. Enter 882679# at the prompt for a PIN number.
Long-distance charges apply. If you need financial help, we can provide a phone card.
Questions? Contact Long-Term Follow-Up at (206) 667-4415.