Development and Implementation of an Advanced Practitioner Led Survivorship Clinic for Patients Status Post Allogeneic Transplant

Hematopoietic cell transplant is a potentially curative option for adult and pediatric patients with hematologic malignancy or bone marrow failure syndrome. An increasing number of patients have the opportunity to undergo this intensive treatment in part due to improvements in treatment protocols and expanding sources of stem cells. However, there is a prolonged recovery period following transplant during which patients are at risk for various of physical and psychological effects.

After working with transplant patients for many years, Linda Baer, APRN and Lauren Brister, APRN developed an interest in the long-term health maintenance and the survivorship needs of this patient population. With a review of the transplant literature, Linda and Lauren did not find specific recommendations for survivorship care in small to medium-size transplant centers. Therefore, they outlined a research project with the intent to explore this concept further. The project’s first phase was a survey sent to UH Seidman Cancer Center adult patients who underwent an autologous or allogeneic transplant between 2009 and 2014. The survey's goal was to understand better the physical, psychological, emotional and spiritual needs of transplant patients. The project’s second phase was to design, implement and evaluate a pilot survivorship clinic.

The results from the needs assessment survey reinforced the importance of addressing all four quality of life domains within the context of survivorship care. Entry into the quarterly pilot survivorship clinic was offered at the one-year post-transplant anniversary, which is often a difficult transition period for patients and family caregivers. The pilot clinic included a visit with Linda or Lauren to review a portion of their individualized survivorship care plan and a group educational session with a skill-building exercise. The four group sessions were facilitated by an advanced practice provider, physician, social worker, or spiritual care counselor with expertise on the designated theme of the session. A significant finding from the pilot project was that transplant patients need ongoing education and information regarding survivorship resources throughout their care continuum. The results informed the content and format of the current survivorship clinic, which begins earlier in the transplant journey. Patients and caregivers have expressed positive feedback with this focus on long-term health maintenance and life after transplant.

This project was awarded an alumni research grant from Case Western Reserve University Frances Payne Bolton School of Nursing, which helped cover the costs associated with the study. Throughout the project, Linda and Lauren were very fortunate to have the support of the UH Seidman Cancer Center leadership and the Stem Cell Transplant Program. Nursing and administrative resources were available for survey mailings/collection, pilot survivorship clinic presentation, assistance with logistics and data collection, etc. Linda and Lauren collaborated with UH Seidman Cancer Center Nurse Scientist Susan Mazanec, PhD, RN, AOCN, FAAN who worked with them through every step of the process – from the initial brainstorming sessions and writing of the proposal and grant submission to the regulatory, implementation, and dissemination phases. In addition, this project has been shared at conferences with international audiences via podium and poster presentations.  The corresponding manuscript was published in the November/December 2021 issue Journal of the Advanced Practitioner in Oncology.