Massachusetts General Hospital Cancer Center: Survivorship Initiative for Patients Who Have Undergone Bone Marrow Transplant

TON - March 2017, Vol 10, No 2 - Cancer Center Profile

The Mass General Cancer Center is an integral part of a top-flight academic medical center: Massachusetts General Hospital. The Mass General Cancer Center is among the leading cancer care providers in the United States, and is a National Cancer Institute–designated comprehensive cancer center as part of the 7-member Harvard Medical School consortium. This consortium forms the largest research collaborative in the country, and has participated in developing promising new treatments that have revolutionized the treatment of cancer.

The Mass General Cancer Center provides customized multidisciplinary care to children and adults. In addition to medical oncology, surgical oncology, and radiation oncology, the cancer center offers a full range of cancer care–related programs.

These include the Katherine A. Gallagher Integrative Therapies Program, which offers free wellness programs for patients and their caregivers; the Lifestyle Medicine Clinic for patients and survivors who want a personalized consultation to improve their overall physical fitness and quality of life; a sexual health clinic; the Marjorie E. Korff PACT program, which offers psychoeducational support for patients who are parents; and the Center for Psychiatric Oncology and Behavioral Sciences, which helps patients cope with the psychological and behavioral impact of their cancer.

The Mass General Bone Marrow Transplant (BMT) Survivorship Program is a new initiative specifically designed to improve the lives of patients who have undergone BMT. The program features several unique components that address the various aspects of BMT survivorship, and is open to patients who are ≥1 years post-BMT.

The Oncology Nurse-APN/PA (TON) spoke with Julie Vanderklish, NP, about the comprehensive efforts involved in planning the program and bringing it to fruition. Ms Vanderklish is co-leader of the program under the directorship of Areej El-Jawahri, MD, a BMT and palliative care specialist at the Mass General Cancer Center.

TON: What distinguishes the BMT Survivorship Program from other survivorship programs?
Julie Vanderklish:
As far as I am aware, there is a limited number of BMT survivorship programs in the United States. We designed our program based on the recognition of the immense medical, psychological, and survivorship needs of hematopoietic stem-cell transplant recipients. Our goals are to provide high-quality survivorship care, conduct innovative research specific to BMT survivorship, and improve the quality of life and care of BMT survivors, their families, and caregivers.

Our program incorporates BMT specialists, medical experts, palliative care, and support for sexual health and psychosocial issues.

TON: How did you go about designing the program?
Ms Vanderklish:
We realized we first needed to understand survivorship and what it entails. We reviewed data on the effects of cancer treatments and BMT complications, as well as survivorship recommendations from the American Cancer Society, the American Society of Clinical Oncology, the National Institutes of Health, and the National Cancer Institute. We also met with directors of other BMT survivorship programs and then began our clinical design.

We created up-to-date follow-up recommendations for each organ system affected by BMT. We collaborated with Massachusetts General Hospital staff who were experts in each of those areas and who had clinical interest in the long-term complications of BMT. We also made sure that these experts would be available for quick referral. Finally, we were able to design the clinic operations, the survivorship care plan, educational materials, and methods for communicating with BMT specialists, primary care physicians, and patients. We worked with excellent social workers and psychologists in developing the psychosocial component of our program and support services.

TON: This sounds like a time-consuming effort.
Ms Vanderklish:
Yes, it took us more than 1 year, working part-time approximately 10 to 20 hours per week, to design the program.

TON: Did you and Dr El-Jawahri have any help in laying the groundwork?
Ms Vanderklish:
Dr El-Jawahri and I did most of the groundwork. However, we received guidance and support from many local experts in BMT and chronic graft-versus-host disease (GVHD), such as Nathaniel Treister, DMD, DMSc, Chief, Division of Oral Medicine and Dentistry, Brigham and Women’s Hospital, Boston, MA; Arturo P. Saaverdra, MD, PhD, Medical Director, Medical Dermatology, Massachusetts General Hospital; and many others. Our superb social work, psychology, nursing, and nurse practitioner teams were also very helpful.

We performed a trial run that started in July 2016. We saw 23 patients through December and then reviewed our approach and made some adjustments. We officially opened on January 6, 2017, and are seeing 1 to 2 patients weekly. To date, 30 patients have been through our survivorship program. Our goal is that every patient who has undergone an allogeneic stem-cell transplant at Massachusetts General Hospital will be seen at the clinic. People who are ≥12 months from time of transplantation can be referred. We now have approximately 60 referrals awaiting consult.

TON: What does the initial assessment entail?
Ms Vanderklish:
It takes approximately 4 hours to complete a survivorship consult. We approach a survivorship visit by first reviewing the patient’s diagnosis, cancer treatment (including BMT), side effects, and medical history. Next, Dr El-Jawahri or myself meet with the patient, which takes approximately 60 to 90 minutes. After that, we write an individualized survivorship care plan in the longitudinal medical record and discover our recommendations with the BMT team, primary care physician, and the patient. This takes approximately 4 to 5 hours. Our patients also meet with the social worker for 1 hour to process the BMT experience, and with a program nurse to review things such as diet, exercise, infection prevention, and education about chronic GVHD.

TON: How did your career path lead to caring for patients who have had BMT?
Ms Vanderklish:
During nursing school at Northeastern University, Boston, MA, one of my cooperative work/study programs was at Dana-Farber Cancer Institute, Boston, in the BMT inpatient unit. I fell in love with transplant and the patients I met there.

Since then, except for a brief hiatus to have my children, I have always worked with BMT patients. After working at Massachusetts General Hospital on the inpatient BMT floor, I wanted to be able to expand my role in transplant. So I went back to school to become a nurse practitioner. I have been a nurse practitioner for 17 years within the Partners System at Massachusetts General Hospital, Dana-Farber Cancer Institute, and Newton-Wellesley Hospital. My main area of interest is chronic GVHD, a complex side effect of BMT that has a significant impact on quality of life.

TON: Have there been any recent advances in the management of chronic GVHD?
Ms Vanderklish:
We are getting better at preventing GVHD using targeted therapies, whereas in the past we relied more on high-dose steroids. We now have specialists who focus on various organ systems affected by GVHD, and are able to tailor our treatments accordingly. Compared with 17 years ago, patients now have new treatment options depending on the site of chronic GVHD (ie, oral, ocular, genital, and skin/fascia).

TON: How did you get involved in the survivorship program?
Ms Vanderklish:
I met Dr El-Jawahri at Massachusetts General Hospital and she knew about my BMT experience and in-depth interest in chronic GVHD. She asked if I would be interested in developing a survivorship program.

TON: Can you provide some specific examples of interventions you will use in the BMT Survivorship Program?
Ms Vanderklish:
We are preparing to initiate patient and caregiver support groups and patient support groups. In addition, we plan to launch a webinar on March 1, 2017, that will deliver 8 weekly sessions, each 1.5 hours in length, covering different long-term complications of BMT. These include intimacy and communication effects, chronic GVHD, and fatigue. Each session is co-led by a nurse practitioner or physician and a psychologist, and the focus is on education, discussion, and mindfulness exercises.

TON: What is the most challenging aspect of working with BMT survivors?
Ms Vanderklish:
The biggest challenge is time management. Many patients have multiple problems that are clinically complex. We have to address all of their healthcare needs, and, at the same time, not overwhelm them with multiple follow-up appointments and testing.

TON: What aspect of this work is the most rewarding?
Ms Vanderklish:
By educating our patients and other physicians about BMT survivorship, our patients will have better clinical outcomes and improved quality of life. This is the most exciting and rewarding aspect of this initiative. For example, I’ve seen patients who have not been able to have sexual intercourse for years because of pain related to GVHD or vaginal atrophy. We have been able to offer interventions to alleviate these symptoms and improve or restore their sexual health.

Addressing sexual health is only one specific component of our survivorship program, but a very important one.

TON: Do you plan to quantify your results?
Ms Vanderklish:
We will use specific quality metrics, including bone health, pulmonary function tests, ocular exams, and other measures for the different organ systems.

TON: Is the survivorship program covered by health insurance?
Ms Vanderklish:
I have had no issues regarding coverage for a survivorship visit. Survivorship consultations will become standard for BMT programs around the country.

Last modified: March 7, 2017