Personalizing Care Plans for Survivors Who Receive Hematopoietic Cell Transplant for Cancer Treatment Karen L Syrjala, PhD ksyrjala@fredhutch.org Barry A Schatz bschatz@illinois.edu Member, Director of Biobehavioral Sciences Bone Marrow Transplant Survivor Co-Director of Survivorship Program Associate Director for Administration Fred Hutchinson Cancer Research Center Cancer Center at Illinois Professor, Univ of Washington School of Medicine University of Illinois Urbana-Champaign
Karen Syrjala & Barry Schatz • Have nothing to disclose 2
What are we talking about? • The Big Picture • Why cancer survivorship care matters to all of us • The Up-Close, Personalized Picture • How is hematopoietic cell transplant (HCT) both unique and relevant to other survivors’ health needs • Our national study that provided Survivorship Care Plans to HCT survivors • Why and How we partner then and still 3
41% lifetime cancer risk 1 in 2 men 1 in 3 women 5-year relative survival rate: 80% of children 69% of adults if diagnosed 2006-2012 4
41% lifetime cancer risk 67% were diagnosed 5 or more years ago de Moor J S et al. Cancer Epidemiol Biomarkers Prev 2013;22:561-570 American Cancer Society. Cancer Treatment & Survivorship Facts & Figures. Atlanta: ACS; 2017 & 2018 5
Cancer & Ca r & H HCT S Survivor Ch r Challenges Wellness & PsychoSocial Organ Function Mental health Cardiac Employment Endocrine Education Musculoskeletal Social interactions/support Genitourinary Chronic symptoms: GI/Hepatic Fatigue, Cognition, Insomnia, Neuropathy Neurologic Lifestyle Pulmonary Physical function Environment & Finances Subsequent Malignancies Family / Caregiver function Recurrent cancer Access to health & resources Fertility & Reproduction New cancers Insurance Fertility Health of offspring Sexual functioning Financial toxicity 6
HCT S Surviv ivor C Challe llenges 9-fold increased risk of dying continues for adult transplant recipients who survive 5-25 years Median age 45 at HCT • 13.5% of allogeneic survivors • 19% of autologous survivors Syrjala, JCO, 2012 7
Ca Cancer & r & H HCT S Survivor Ch r Challenges Unmet Needs among Cancer Survivors Percentage of Survivors Percentage of Survivors Reporting Need, 4–14 Years Reporting Need, after 2–5 Years Postdiagnosis a Postdiagnosis b Need Category Symptoms and side effects 76 63 Tests and treatment 72 71 Health promotion 65 68 Interpersonal and emotional 6 54 Insurance 39 42 Sexual functioning/fertility 35 31 Number of information needs is inversely related to mental well-being a Kent et al. Patient Ed Couns, 2012 & b Beckjord et al, 2008 8
Cancer & HCT Survivors Why Do Survivors & Providers Need Survivorship Care Plans? • Many survivors do not know what they need: what is ‘normal’ • Unaware of what tests and follow up visits they need • Unsure which health care specialists they should see and for what • Unsure how they ‘should feel’ • Care Coordination is unclear • Health care providers may not know about transplant needs • If patients look fine and do not complain, health care providers assume all is well • Lack access to survivorship care • Services are not available or survivors cannot take advantage of services 9
HCT Survivors Transplant survivors are distinct from other cancer survivors and unique among themselves They may have lessons for other cancer survivors or people with living with chronic conditions • Transplant is a highly specific situation with great variability in needs both medically and personally • Multitude of diseases treated with transplant • Challenge to adapt care to the diversity of pathways and care needs • Potential to translate methods to other diseases 10
As Survivors: Can get lost on a confusing, unfamiliar journey Goal of Survivorship Care Plans: Provide a roadmap back to a fulfilled life, Powered to take care of health needs and know what to ask of providers
Survivorship Care Plan Study 12
Survivorship Care Plan Study A National Multicenter Randomized Controlled Trial • Participating transplant centers (Site PI’s) • Protocol Team Members − Baylor University Medical Center (J Reynolds) • Patients and caregivers − Cleveland Clinic (N Majhail) − Fred Hutchinson Cancer Research Center (KS Baker) • National Marrow Donor Program/Be The Match − Kansas University Medical Center (J McGuirk) − Patient Services Advisory Group − Karmanos Cancer Institute (A Deol) − Loyola University (P Stiff) • CIBMTR − Mayo Clinic, Arizona (N Khera) − Health Services Research Program − Mayo Clinic, Rochester (S Hashmi) − Resource for Clinical Investigation in Blood and − Ohio State University (S Jaglowski) Marrow Transplantation (RCI BMT) − Roswell Park Cancer Institute (T Hahn) − University of Florida (J Wingard) • Funding − University of Massachusetts (J Cerny) • PCORI award #CD-12-11-4062 − University of Minnesota (S Holtan) − University of North Carolina (W Woods) − University of Pennsylvania (A Loren) − Vanderbilt University (B Savani) 13
Survivorship Care Plan Study Premise • Hematopoietic cell transplant (HCT) survivors are at high risk for late complications • Guidelines recommend life-long monitoring for screening and prevention of HCT late effects • Followup recommendations based on: age, sex, HCT type, exposure to total body irradiation or steroids, or chronic graft-versus-host disease (GVHD) • A Treatment Summary and Survivorship Care Plan (SCP) is a personalized tool that may facilitate cancer survivor care • Provides summary of treatments, recommendations for monitoring for relapse, screening and prevention of late effects, and other survivorship concerns 14
Survivorship Care Plan Study Study Concept: Centralized approach for SCP Patient clinical data routinely submitted Followup recommendations based on by transplant centers to CIBMTR evidence-based guidelines HCT exposures Age Sex Auto vs Allo TBI Chronic GVHD Steroids Personalized SCP, coordinated and mailed from national registry with call mechanisms in place for follow-up Test efficacy compared to usual care 15
Survivorship Care Plan Study Patient & Other Stakeholder Contributions • Where we started with SCP • Where we ended up 16
Survivorship Care Plan Study Example of Original Treatment Summary and Care Plan 17
Survivorship Care Plan Study Example of Original Treatment Summary and Care Plan 18
Survivorship Care Plan Study Example of Revised Treatment Summary and Care Plan 19
Survivorship Care Plan Study Example of Revised Treatment Summary and Care Plan 20
Survivorship Care Plan Study Randomized Study Primary Objective: Change from baseline to 6 months in: • Confidence in Survivorship Information • HCT treatment distress assessment • Mental health score on SF-36 21
Survivorship Care Plan Study Study Flow Diagram 22
Survivorship Care Plan Study Survivorship Care Plan Results in Brief *P-value based on analysis of covariance model with center-level random effects Majhail et al. Haematologica , 2018, PMID: 30514795 23
Survivorship Care Plan Study Qualitative Assessment Of Patient Feedback • Dominant themes from patients receiving the SCP: • Enhanced understanding of transplant treatments and effects • Helped survivors focus on overall health • Supported patients in communicating and making care decision with providers • Facilitated coping and emotional health “Care plan has been helpful to me and my “It really got me to go “It enabled me, or gave “They have made me husband both … to for my mammogram, aware of what I’ve been me the knowledge to blood work and I just know that certain through and what is let local health scheduled a things are not important for my well- providers know what colonoscopy … unusual … to ‘not get being … the care plan they need to know … to it made me look at bent out of shape’” and summary have challenge them if they the bigger picture of given me a lot of didn't think I needed my health” confidence ” certain followup” 24
Survivorship Care Plan Study Lessons Learned, Implications & What’s Next • Survivorship Care Plans reduce distress in people who use the materials • One size does not fit all: N eed personalized options to fit the materials into their own lives • Partnering: without patients/survivors in our survivorship program development and research, the program may work for the health care system, but not for them • Need live, adaptable Survivorship Care Programs – survivorship is not a ‘phase’ it’s the rest of life • Need to extend the impact of survivorship care plans to improve health outcomes Next: INSPIRE Study: Mailed hard copy + Mobile App + Website to create a living document that is interactive, personalized, updated in real time Plus ‘stepped care’: Telehealth follow-up for those who need it 25
Thank You! Questions? Discussion Learn More: PCORI website info@pcori.org Karen Syrjala ksyrjala@fredhutch.org Barry Schatz bschatz@illinois.edu 26
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