Skip to main content
Grant Details

Grant Number: 5R01CA215134-02 Interpret this number
Primary Investigator: Syrjala, Karen
Organization: Fred Hutchinson Cancer Research Center
Project Title: Integrating Health Informatics in a Scalable Stepped Care Self-Management Program for Survivors After Hematopoietic Cell Transplantation
Fiscal Year: 2018
Back to top


Abstract

7. PROJECT SUMMARY/ABSTRACT By 2030, there will be an estimated half a million hematopoietic cell transplant (HCT) survivors in the US. HCT survivors have higher rates of late mortality and adverse effects compared to other cancer treatments. Long- term complications include high rates of cardiovascular disease, metabolic syndrome, and new cancers along with psychosocial difficulties including elevated cancer-related distress and depression. This proposal integrates, extends, and improves two successful HCT survivorship programs tested in randomized controlled trials (RCTs) and will fill a critical gap in care for HCT survivors by providing a novel, technology based survivorship care program to provide personalized self-management skills and interactive support. The proposed RCT will be offered to HCT survivors at the point of their greatest need as they transition away from close monitoring at their transplant centers. It will combine an online, social media and mobile application INSPIRE program, with a personalized and HCT-specific treatment summary and survivorship care plan (SCP). Informatics will integrate the data and study conduct resources of the Center for International Blood and Marrow Transplant Research (CIBMTR) and the National Marrow Donor Program (NMDP). The specific aims are to: 1) Among HCT survivors with poor health care adherence to cardiometabolic or new cancer surveillance and/or elevated cancer-related distress, determine the impact of a patient-centered, self- management stepped care program compared to an active control group provided access to HCT survivorship best practices; 2) Determine characteristics of intervention participants who require telehealth stepped care at 1-month; and 3) Determine resources that would be needed to sustain the intervention as a national HCT survivorship program if implemented through the CIBMTR//NMDP (i.e., costs, level of expertise, and use of intervention components relative to costs). These aims will be accomplished in a multicenter RCT of N=980 2-5 year HCT survivors randomized to a self-management, stepped care program beginning with the online INSPIRE program plus a personalized SCP (electronically populated with existing CIBMTR data resources) and adding telehealth self-management for those who fail to improve after 1 month, versus an active control group provided access to the personalized SCP and a control website. Primary outcomes will be improved adherence to cardiometabolic and second cancer surveillance guidelines and distress at 12 months. The proposed intervention uses a sustainable informatics administration system for study management and intervention delivery, and potentially improves effect sizes of earlier studies by adding a larger ?dose? of the intervention through the addition of telehealth stepped care for those who do not respond to the online program alone. If the program demonstrates efficacy it could be readily implemented to improve the standard of care nationally for HCT survivors by leveraging the existing infrastructure of the CIBMTR/NMDP.

Back to top


Publications

Tailoring a Survivorship Care Plan: Patient and Provider Preferences for Recipients of Hematopoietic Cell Transplantation.
Authors: Denzen E.M. , Preussler J.M. , Murphy E.A. , Baker K.S. , Burns L.J. , Foster J. , Idossa L. , Moore H.K. , Payton T.J. , Haven D. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018-10-10 00:00:00.0; , .
EPub date: 2018-10-10 00:00:00.0.
PMID: 30315940
Related Citations

Systemic Sclerosis as an Indication for Autologous Hematopoietic Cell Transplantation: Position Statement from the American Society for Blood and Marrow Transplantation.
Authors: Sullivan K.M. , Majhail N.S. , Bredeson C. , Carpenter P.A. , Chatterjee S. , Crofford L.J. , Georges G.E. , Nash R.A. , Pasquini M.C. , Sarantopoulos S. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018 Oct; 24(10), p. 1961-1964.
EPub date: 2018-06-25 00:00:00.0.
PMID: 29953945
Related Citations

Survivorship, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology.
Authors: Denlinger C.S. , Sanft T. , Baker K.S. , Broderick G. , Demark-Wahnefried W. , Friedman D.L. , Goldman M. , Hudson M. , Khakpour N. , King A. , et al. .
Source: Journal Of The National Comprehensive Cancer Network : Jnccn, 2018 Oct; 16(10), p. 1216-1247.
PMID: 30323092
Related Citations

-host disease.
Authors: Lee S.J. , Onstad L. , Chow E.J. , Shaw B.E. , Jim H.S.L. , Syrjala K.L. , Baker K.S. , Buckley S. , Flowers M.E. .
Source: Haematologica, 2018 Sep; 103(9), p. 1535-1541.
EPub date: 2018-06-01 00:00:00.0.
PMID: 29858386
Related Citations

Rates and Risk Factors for Post-Traumatic Stress Disorder Symptomatology among Adult Hematopoietic Cell Transplant Recipients and Their Informal Caregivers.
Authors: Liang J. , Lee S.J. , Storer B.E. , Shaw B.E. , Chow E.J. , Flowers M.E. , Krakow E.F. , Bar M. , Syrjala K.L. , Salit R.B. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018-08-09 00:00:00.0; , .
EPub date: 2018-08-09 00:00:00.0.
PMID: 30098393
Related Citations

Health-Related Quality of Life after Autologous Stem Cell Transplantation for Multiple Myeloma.
Authors: Chakraborty R. , Hamilton B.K. , Hashmi S.K. , Kumar S.K. , Majhail N.S. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018 Aug; 24(8), p. 1546-1553.
EPub date: 2018-04-04 00:00:00.0.
PMID: 29626515
Related Citations

Engagement with INSPIRE, an Online Program for Hematopoietic Cell Transplantation Survivors.
Authors: Syrjala K.L. , Crouch M.L. , Leisenring W.M. , Flowers M.E.D. , Artherholt S.B. , Fiscalini A.S. , Romano E. , Romano J.M. , Martin P.J. , Yi J.C. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018 Aug; 24(8), p. 1692-1698.
EPub date: 2018-05-09 00:00:00.0.
PMID: 29753161
Related Citations

Correlates of anxiety and depression symptoms among patients and their family caregivers prior to allogeneic hematopoietic cell transplant for hematological malignancies.
Authors: Posluszny D.M. , Bovbjerg D.H. , Syrjala K.L. , Agha M. , Dew M.A. .
Source: Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer, 2018-07-19 00:00:00.0; , .
EPub date: 2018-07-19 00:00:00.0.
PMID: 30022348
Related Citations

An online randomized controlled trial, with or without problem-solving treatment, for long-term cancer survivors after hematopoietic cell transplantation.
Authors: Syrjala K.L. , Yi J.C. , Artherholt S.B. , Romano J.M. , Crouch M.L. , Fiscalini A.S. , Hegel M.T. , Flowers M.E.D. , Martin P.J. , Leisenring W.M. .
Source: Journal Of Cancer Survivorship : Research And Practice, 2018-05-05 00:00:00.0; , .
EPub date: 2018-05-05 00:00:00.0.
PMID: 29730827
Related Citations

Prognostic Factors for Mortality among Day +100 Survivors after Allogeneic Hematopoietic Cell Transplantation.
Authors: Patel S.S. , Rybicki L.A. , Corrigan D. , Bolwell B. , Dean R. , Liu H. , Gerds A.T. , Hanna R. , Hill B. , Jagadeesh D. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018 May; 24(5), p. 1029-1034.
EPub date: 2018-01-31 00:00:00.0.
PMID: 29369800
Related Citations

Opportunities for improving oncology care.
Authors: Syrjala K.L. .
Source: The Lancet. Oncology, 2018 Apr; 19(4), p. 449.
PMID: 29611517
Related Citations

Severity, course, and predictors of sleep disruption following hematopoietic cell transplantation: a secondary data analysis from the BMT CTN 0902 trial.
Authors: Jim H.S.L. , Sutton S. , Majhail N.S. , Wood W.A. , Jacobsen P.B. , Wingard J.R. , Wu J. , Knight J.M. , Syrjala K.L. , Lee S.J. .
Source: Bone Marrow Transplantation, 2018-03-07 00:00:00.0; , .
EPub date: 2018-03-07 00:00:00.0.
PMID: 29515249
Related Citations

Damocles' syndrome revisited: Update on the fear of cancer recurrence in the complex world of today's treatments and survivorship.
Authors: Cupit-Link M. , Syrjala K.L. , Hashmi S.K. .
Source: Hematology/oncology And Stem Cell Therapy, 2018-02-19 00:00:00.0; , .
EPub date: 2018-02-19 00:00:00.0.
PMID: 29476707
Related Citations

PROMIS measures can be used to assess symptoms and function in long-term hematopoietic cell transplantation survivors.
Authors: Shaw B.E. , Syrjala K.L. , Onstad L.E. , Chow E.J. , Flowers M.E. , Jim H. , Baker K.S. , Buckley S. , Fairclough D.L. , Horowitz M.M. , et al. .
Source: Cancer, 2018-02-15 00:00:00.0; 124(4), p. 841-849.
EPub date: 2017-10-26 00:00:00.0.
PMID: 29072787
Related Citations

Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation.
Authors: Burns L.J. , Abbetti B. , Arnold S.D. , Bender J. , Doughtie S. , El-Jawahiri A. , Gee G. , Hahn T. , Horowitz M.M. , Johnson S. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2018-02-03 00:00:00.0; , .
EPub date: 2018-02-03 00:00:00.0.
PMID: 29408289
Related Citations

Lifestyle factors and subsequent ischemic heart disease risk after hematopoietic cell transplantation.
Authors: Leger K.J. , Baker K.S. , Cushing-Haugen K.L. , Flowers M.E.D. , Leisenring W.M. , Martin P.J. , Mendoza J.A. , Reding K.W. , Syrjala K.L. , Lee S.J. , et al. .
Source: Cancer, 2018-01-09 00:00:00.0; , .
EPub date: 2018-01-09 00:00:00.0.
PMID: 29315507
Related Citations

Associations Between Dietary Patterns and Longitudinal Quality of Life Changes in Colorectal Cancer Patients: The ColoCare Study.
Authors: Gigic B. , Boeing H. , Toth R. , Böhm J. , Habermann N. , Scherer D. , Schrotz-King P. , Abbenhardt-Martin C. , Skender S. , Brenner H. , et al. .
Source: Nutrition And Cancer, 2018 Jan; 70(1), p. 51-60.
EPub date: 2017-12-15 00:00:00.0.
PMID: 29244538
Related Citations

Long-term complications after hematopoietic cell transplantation.
Authors: Majhail N.S. .
Source: Hematology/oncology And Stem Cell Therapy, 2017 Dec; 10(4), p. 220-227.
EPub date: 2017-06-13 00:00:00.0.
PMID: 28641097
Related Citations

Anxiety and Depression in Cancer Survivors.
Authors: Yi J.C. , Syrjala K.L. .
Source: The Medical Clinics Of North America, 2017 Nov; 101(6), p. 1099-1113.
EPub date: 2017-08-18 00:00:00.0.
PMID: 28992857
Related Citations

Agenda for Translating Physical Activity, Nutrition, and Weight Management Interventions for Cancer Survivors into Clinical and Community Practice.
Authors: Basen-Engquist K. , Alfano C.M. , Maitin-Shepard M. , Thomson C.A. , Schmitz K.H. , Pinto B.M. , Stein K. , Zucker D.S. , Syrjala K.L. , Fallon E. , et al. .
Source: Obesity (silver Spring, Md.), 2017 Nov; 25 Suppl 2, p. S9-S22.
PMID: 29086526
Related Citations

A systematic review of religious beliefs about major end-of-life issues in the five major world religions.
Authors: Chakraborty R. , El-Jawahri A.R. , Litzow M.R. , Syrjala K.L. , Parnes A.D. , Hashmi S.K. .
Source: Palliative & Supportive Care, 2017 Oct; 15(5), p. 609-622.
PMID: 28901283
Related Citations

Survivorship, Version 2.2017, NCCN Clinical Practice Guidelines in Oncology.
Authors: Denlinger C.S. , Sanft T. , Baker K.S. , Baxi S. , Broderick G. , Demark-Wahnefried W. , Friedman D.L. , Goldman M. , Hudson M. , Khakpour N. , et al. .
Source: Journal Of The National Comprehensive Cancer Network : Jnccn, 2017 Sep; 15(9), p. 1140-1163.
PMID: 28874599
Related Citations

Three sides to a story: Child, parent, and nurse perspectives on the child's experience during hematopoietic stem cell transplantation.
Authors: Ullrich C.K. , Rodday A.M. , Bingen K.M. , Kupst M.J. , Patel S.K. , Syrjala K.L. , Harris L.L. , Recklitis C.J. , Chang G. , Guinan E.C. , et al. .
Source: Cancer, 2017-08-15 00:00:00.0; 123(16), p. 3159-3166.
EPub date: 2017-04-07 00:00:00.0.
PMID: 28387946
Related Citations

National Institutes of Health Hematopoietic Cell Transplantation Late Effects Initiative: The Patient-Centered Outcomes Working Group Report.
Authors: Bevans M. , El-Jawahri A. , Tierney D.K. , Wiener L. , Wood W.A. , Hoodin F. , Kent E.E. , Jacobsen P.B. , Lee S.J. , Hsieh M.M. , et al. .
Source: Biology Of Blood And Marrow Transplantation : Journal Of The American Society For Blood And Marrow Transplantation, 2017 Apr; 23(4), p. 538-551.
PMID: 27660168
Related Citations

Provision of integrated psychosocial services for cancer survivors post-treatment.
Authors: Recklitis C.J. , Syrjala K.L. .
Source: The Lancet. Oncology, 2017 Jan; 18(1), p. e39-e50.
PMID: 28049576
Related Citations

Cyclophosphamide leads to persistent deficits in physical performance and in vivo mitochondria function in a mouse model of chemotherapy late effects.
Authors: Crouch M.L. , Knowels G. , Stuppard R. , Ericson N.G. , Bielas J.H. , Marcinek D.J. , Syrjala K.L. .
Source: Plos One, 2017; 12(7), p. e0181086.
EPub date: 2017-07-10 00:00:00.0.
PMID: 28700655
Related Citations




Back to Top