INSPIRE: A Multicenter Randomized Controlled Trial Integrating Health Informatics in a Scalable Stepped Care Self-Management Program for Survivors After Hematopoietic Cell Transplantation
Principal Investigators: Karen Syrjala, Ph.D.; K. Scott Baker, M.D.; Navneet Majhail, M.D.
The goal of this project is to examine ways to improve the health of long-term survivors of bone marrow or blood stem cell transplant. After transplant many survivors may feel stressed or may be unsure of what health care they need as a transplant survivor. We want to know if an online program called ‘INSPIRE,’ along with a personalized survivorship care plan and optional phone calls to discuss using the survivorship care plan, can improve stress and health care for transplant survivors.
This study will compare the INSPIRE program to the standard care of currently available online sites for transplant survivors to learn which works better for people who have received bone marrow or blood stem cell transplants. There are two groups of patients in this study. We will give different treatments to different groups, and compare the results to determine if the online program is effective. Participants will receive personalized medical guidelines to share with a health care provider to guide future treatment.
INSPIRE: Internet Studies to Enhance Long Term Survivorship after Hematologic Malignancy
Principal Investigator: Karen Syrjala, PhD
This project's goal is to use an internet- and social media-based program called INSPIRE to reduce depression and transplant-related emotional distress, and to improve health care adherence among adult hematopoietic cell transplantation (HCT) survivors.
The project builds on our previous work showing that an internet intervention is effective at reducing depression and distress for survivors at a single transplant center. By improving upon our earlier websites, adding texting and social media components like Facebook and Twitter, and extending the intervention to survivors from national transplant centers, we are advancing the science of providing online health care delivery to cancer survivors. Our new research integrates a stepped care, telehealth program with online technology to extend the impact of our treatments.
Integrating Health Informatics in a Scalable Stepped Care Self-Management Program for Survivors After Hematopoietic Cell Transplantation
Principal Investigators: Karen Syrjala, PhD, Scott Baker, MD, Navneet Majhail, MD
The goal of this project is to expand the INSPIRE project into a stepped care program with self-management calls. It includes online modalities using internet, social media and mobile apps to improve health care of survivors 2-5 years after HCT. We build on previous INSPIRE projects by focusing on cardiometabolic or subsequent cancer surveillance and distress. This project also extends to a large multicenter national program for sustainable dissemination and implementation testing, collaborating with the Center for International Blood and Marrow Transplant Research (CIBMTR) and the National Marrow Donor Program (NMDP). If effective, this program could be implemented nationwide for long-term HCT survivors and would provide a framework for similar survivorship care models in non-HCT cancer survivor populations.
Survivorship Center of Excellence
Director: K. Scott Baker, MD MSc
Co-Director: Karen Syrjala, PhD
Associate Director for Operations: Emily Jo Rajotte, MPH
This comprehensive survivorship program includes clinical care at the SCCA, an integrated research program, and education and outreach to health care providers and all cancer survivors throughout the lifespan. With the SCCA oncology network sites in the Northwest, we are developing stronger community resources and targeting underserved populations. We are also evaluating unique models of care designed to overcome some of the barriers to optimal health services and access to research for survivors. This survivorship program provides a foundation for research defining survivorship barriers, needs and treatments to optimize survivor long-term care.
Building from our expertise in integrating technology to improve and standardize care delivery, we have developed the Survivorship Informatics Management System (SIMS). SIMS has instantly accessible programs for online assessment of patient-reported outcomes for clinical and research use as well as an extensive, disease-specific program for producing treatment summaries and survivorship care plans. These are used in providing care at our SCCA Survivorship Clinic.
Individualized Care Plans for Hematopoietic Cell Transplant Survivors
Principal Investigators: Navneet Majhail, MD, MS; Co-Investigator: Karen Syrjala, PhD
This Patient-Centered Outcomes Research Institute (PCORI) funded study assesses the value of personalized Survivorship Care Plans (SCPs) that incorporate patient-specific treatment exposures to provide guidelines for long-term follow-up care. The SCP is designed to enhance patient knowledge and confidence, increase adherence to recommended healthcare, improve health behaviors, and reduce emotional distress. The SCPs are developed based on a national HCT outcomes registry (the Center for International Blood and Marrow Transplant Research) and on established recommendations for survivorship care and preventative practices for transplant survivors. Personalized SCPs are compared with usual care (no SCPs) in a randomized controlled trial.
Couple Communication in Cancer
Principal Investigator: Shelby Langer, PhD; Co-Investigator: Karen Syrjala, PhD
This NCI-funded project aims to identify how communicative processes are linked to cancer patient and partner outcomes. The study is testing two separate models (the social-cognitive processing and relationship intimacy models) to see which better explains the psychological and relationship adjustment of couples during cancer treatment. The multi-method approach includes laboratory verbal and non-verbal communication scoring of interactions and daily mobile app-based ecological momentary assessment of couples’ dyadic communication. Assessments will delineate mediators (how they work), moderators (for whom they work), and for which outcomes they are most predictive. The goal is to create a new integrated model combining key components of both models to identify the optimal integrated model for how communication between couples in cancer relates to cancer outcomes. We will use this model to design evidenced-based couples’ interventions.