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Ferrata Storti Foundation
Haematologica 2019 Volume 104(5):1084-1092
Quality of Life
Randomized controlled trial of individualized treatment summary and survivorship care plans for hematopoietic cell transplantation survivors
Navneet S. Majhail,1 Elizabeth Murphy,2 Purushottam Laud,3
Jaime M. Preussler,2,4 Ellen M. Denzen,2,4 Beatrice Abetti,5 Alexia Adams,4 RaeAnne Besser,4 Linda J. Burns,2,4 Jan Cerny,6 Rebecca Drexler,4
Theresa Hahn,7 Lensa Idossa,2 Balkrishna Jahagirdar,8 Naynesh Kamani,9 Alison Loren,10 Deborah Mattila,4 Joseph McGuirk,11 Heather Moore,2
Jana Reynolds,12 Wael Saber,3,13 Lizette Salazar,14 Barry Schatz,15
Patrick Stiff,15 John R. Wingard,16 Karen L Syrjala17 and K. Scott Baker17
1Blood and Marrow Transplant Program, Cleveland Clinic, OH; 2National Marrow Donor Program/Be The Match, Minneapolis, MN; 3Medical College of Wisconsin, Milwaukee, WI; 4Center for International Blood and Marrow Transplant Research, Minneapolis, MN; 5Leukemia and Lymphoma Society, White Plains, NY; 6UMass Memorial Medical Center, Worcester, MA; 7Roswell Park Comprehensive Cancer Center, Buffalo, NY; 8Regions Hospital, St Paul, MN; 9AABB, Bethesda, MD; 10University of Pennsylvania, Philadelphia, PA; 11University of Kansas Medical Center, Kansas City, KS; 12Baylor University Medical Center, Dallas, TX; 13Center for International Blood and Marrow Transplant Research, Milwaukee, WI; 14Haledon, NJ; 15Loyola University Medical Center, Chicago, IL; 16University of Florida, Gainesville, FL and 17Fred Hutchinson Cancer Research Center, Seattle, WA, USA
ABSTRACT
Survivorship Care Plans (SCPs) may facilitate long-term care for can- cer survivors, but their effectiveness has not been established in hematopoietic cell transplantation recipients. We evaluated the impact of individualized SCPs on patient-reported outcomes among transplant survivors. Adult (≥18 years at transplant) survivors who were 1-5 years post transplantation, proficient in English, and without relapse or secondary cancers were eligible for this multicenter randomized trial. SCPs were developed based on risk-factors and treatment exposures using patient data routinely submitted by transplant centers to the Center for International Blood and Marrow Transplant Research and published guidelines for long-term follow up of transplant survivors. Phone surveys assessing patient-reported outcomes were conducted at baseline and at 6 months. The primary end point was confidence in sur- vivorship information, and secondary end points included cancer and treatment distress, knowledge of transplant exposures, health care uti- lization, and health-related quality of life. Of 495 patients enrolled, 458 completed a baseline survey and were randomized (care plan=231, stan- dard care=227); 200 (87%) and 199 (88%) completed the 6-month assessments, respectively. Patients' characteristics were similar in the two arms. Participants on the care plan arm reported significantly lower distress scores at 6 months and an increase in the Mental Component Summary quality of life score assessed by the Short Form 12 (SF-12) instrument. No effect was observed on the end point of confidence in survivorship information or other secondary outcomes. Provision of individualized SCPs generated using registry data was associated with reduced distress and improved mental domain of quality of life among 1-5 year hematopoietic cell transplantation survivors. Trial registered at clinicaltrials.gov 02200133.
Correspondence:
NAVNEET S. MAJHAIL majhain@ccf.org
Received: August 6, 2018. Accepted: November 23, 2018. Pre-published: December 4, 2018.
doi:10.3324/haematol.2018.203919
Check the online version for the most updated information on this article, online supplements, and information on authorship & disclosures: www.haematologica.org/content/104/5/1084
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