Impact of a health information technology tool addressing information needs of caregivers of adult and pediatric hematopoietic stem cell transplantation patients

  • Alex J. Fauer
  • Flora Hoodin
  • Leah Lalonde
  • Josh Errickson
  • Lyndsey Runaas
  • Tracey Churay
  • Sajjad Seyedsalehi
  • Casiana Warfield
  • Grant Chappell
  • Kristina Brookshire
  • Dima Chaar
  • Ji Youn Shin
  • Michelle Byrd
  • John Magenau
  • David A. Hanauer
  • Sung Won ChoiEmail author
Original Article



We developed BMT Roadmap, a health information technology (HIT) application on a tablet, to address caregivers’ unmet needs with patient-specific information from the electronic health record. We conducted a preliminary feasibility study of BMT Roadmap in caregivers of adult and pediatric HSCT patients. The study was registered on (NCT03161665; NCT02409121).


BMT Roadmap was delivered to 39 caregivers of adult and pediatric patients undergoing first-time HSCT at a single study site. We assessed person-reported outcome measures (PROMs) at baseline (hospital admission), discharge, and day 100: usefulness of BMT Roadmap (Perceived Usefulness); activation (Patient Activation Measure-Caregiver version [PAM-C]); mental health ([POMS-2®]: depression, distress, vigor, and fatigue); anxiety (State-Trait Anxiety Inventory); and quality of life (Caregiver Quality of Life Index-Cancer [CQOLC]). To identify determinants of caregiver activation and quality of life, we used linear mixed models.


BMT Roadmap was perceived useful and activation increased from baseline to discharge (p = 0.001). Further, burden decreased through discharge (p = 0.007). Overall, a pattern of increasing vigor and decreasing depression, distress, fatigue, and anxiety was apparent from baseline to discharge. However, overall quality of life lowered at discharge after accounting for BMT Roadmap use, depression, anxiety, and fatigue (p = 0.04).


BMT Roadmap was a feasible HIT intervention to implement in HSCT caregivers. BMT Roadmap was associated with increased activation and decreased burden, but quality of life lowered across hospitalization. Findings support the need to further develop caregiver-specific self-directed resources and provide them both inpatient and outpatient across the HSCT trajectory.


Information technology Bone marrow transplantation Caregivers Mental health 



This work was presented at the Transplantation and Cellular Therapy Meeting of ASBMT and CIBMTR (02/2018: Salt Lake City, UT) and the Society of Behavioral Medicine Annual Meeting (04/2018: New Orleans, LA). We wish to thank the patients and families who participated in this clinical research study.

Authors’ contributions

Alex Fauer: Investigation, methodology, writing-original draft, writing-review/editing; Flora Hoodin: Data curation, formal analysis, methodology, supervision, validation, visualization, writing-original draft, writing-review/editing; Leah Lalonde, Casiana Warfield, Kristina Brookshire, and Michelle Byrd: Formal analysis, methodology, visualization, writing-review/editing; Josh Errickson: Formal analysis, methodology, visualization, writing-review/editing; Lyndsey Runaas and John Magenau: Investigation, writing-review/editing; Tracey Churay: Project administration, writing-review/editing; Sajjad Seyedsalehi: Software, writing-review/editing; Grant Chappell, Dima Chaar, and Jiyoun Shin: Data curation, visualization, writing-review/editing; David Hanauer and Sung Won Choi: Conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, resources, supervision, validation, visualization, writing-original draft, writing-review/editing.

Funding information

This work was supported by AHRQ (R21HS23613), Fostering Innovations Grant, Gracie Leukemia Grant, and the Rita & Alex Hillman Foundation.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflicts of interest.

Supplementary material

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ESM 1 (DOCX 40.8 kb)
520_2018_4450_MOESM2_ESM.docx (883 kb)
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520_2018_4450_MOESM3_ESM.pdf (19 kb)
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  1. 1.
    Copelan EA (2006) Hematopoietic stem-cell transplantation. N Engl J Med 354(17):1813–1826CrossRefGoogle Scholar
  2. 2.
    Simoneau TL, Mikulich-Gilbertson SK, Natvig C, Kilbourn K, Spradley J, Grzywa-Cobb R, Philips S, McSweeney P, Laudenslager ML (2013) Elevated peri-transplant distress in caregivers of allogeneic blood or marrow transplant patients. Psychooncology 22(9):2064–2070CrossRefGoogle Scholar
  3. 3.
    El-Jawahri AR, Traeger LN, Kuzmuk K, Eusebio JR, Vandusen HB, Shin JA et al (2015) Quality of life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation. Cancer 121(6):951–959CrossRefGoogle Scholar
  4. 4.
    Bevans M, Sternberg EM (2012) Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Jama 307(4):398–403CrossRefGoogle Scholar
  5. 5.
    Northouse LL, Katapodi MC, Schafenacker AM, Weiss D (2012) The impact of caregiving on the psychological well-being of family caregivers and cancer patients. Semin Oncol Nurs 28(4):236–245CrossRefGoogle Scholar
  6. 6.
    Kent EE, Rowland JH, Northouse L, Litzelman K, Chou WY, Shelburne N et al (2016) Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving. Cancer 122(13):1987–1995CrossRefGoogle Scholar
  7. 7.
    Institute of Medicine (2012) Best care at lower cost: the path to continuously learning health care in America. National Academy Press, Washington D.CGoogle Scholar
  8. 8.
    Abernethy AP, Etheredge LM, Ganz PA, Wallace P, German RR, Neti C, Bach PB, Murphy SB (2010) Rapid-learning system for cancer care. J Clin Oncol 28(27):4268–4274CrossRefGoogle Scholar
  9. 9.
    e-Connected Family caregiver: bring caregiving into the 21st Century. National Alliance for Caregiving. Accessed on 12/04/17
  10. 10.
    Maher M, Kaziunas E, Ackerman M, Derry H, Forringer R, Miller K, O’Reilly D, An LC, Tewari M, Hanauer DA, Choi SW (2016) User-centered design groups to engage patients and caregivers with a personalized health information technology tool. Biol Blood Marrow Transplant 22(2):349–358CrossRefGoogle Scholar
  11. 11.
    Maher M, Hanauer DA, Kaziunas E, Ackerman MS, Derry H, Forringer R, Miller K, O’Reilly D, An L, Tewari M, Choi SW (2015) A novel health information technology communication system to increase caregiver activation in the context of hospital-based pediatric hematopoietic cell transplantation: a pilot study. JMIR Res Protoc 4(4):e119CrossRefGoogle Scholar
  12. 12.
    Runaas L, Hanauer D, Maher M, Bischoff E, Fauer A, Hoang T, Munaco A, Sankaran R, Gupta R, Seyedsalehi S, Cohn A, An L, Tewari M, Choi SW (2017) BMT roadmap: a user-centered design health information technology tool to promote patient-centered care in pediatric HCT. Biol Blood Marrow Transplant 23(5):813–819CrossRefGoogle Scholar
  13. 13.
    Davis F (1989) Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Q 13(3):319–340CrossRefGoogle Scholar
  14. 14.
    Hibbard JH, Mahoney ER, Stockard J, Tusler M (2005) Development and testing of a short form of the patient activation measure. Health Serv Res 40:1918–1930CrossRefGoogle Scholar
  15. 15.
    Hibbard JH, Stockard J, Mahoney ER, Tusler M (2004) Development of the patient activation measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res 39:1005–1026CrossRefGoogle Scholar
  16. 16.
    Weitzner MA, Jacobsen PB, Wagner H Jr, Friedland J, Cox C (1999) The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res Int J Qual Life Asp Treat Care Rehab 8:55–63Google Scholar
  17. 17.
    Spielberger CD, Gorsuch RL, Lushene R, Vagg PR, Jacobs GA (1983) Manual for the state-trait anxiety inventory. Consulting Psychologists Press, Palo AltoGoogle Scholar
  18. 18.
    McNair DM, Loor M, Droppelman LF (1981) Profile of mood states. Educational and Industrial Testing Service, San DiegoGoogle Scholar
  19. 19.
    West BT, Welch KB, Galecki AT (2014) Linear mixed models: a practical guide using statistical software. 2, CRC PressGoogle Scholar
  20. 20.
    Sorror ML, Maris MB, Storb R, Baron F, Sandmaier BM, Maloney DG, Storer B (2005) Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT. Blood 106(8):2912–2919CrossRefGoogle Scholar
  21. 21.
    Li Q, Loke AY (2013) The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology 22(11):2399–2407CrossRefGoogle Scholar
  22. 22.
    DuBenske LL, Gustafson DH, Namkoong K, Hawkins RP, Atwood AK, Brown RL et al (2014) CHESS improves cancer caregivers’ burden and mood: results of an eHealth RCT. Health Psychol 33(10):1261–1272CrossRefGoogle Scholar
  23. 23.
    Runaas L, Hoodin F, Munaco A, Fauer A, Sankaran R, Churay T et al (2017) Journal of clinical oncology clinical cancer informatics. Accepted, In PressGoogle Scholar
  24. 24.
    Bevans MF, Mitchell SA, Marden S (2008) The symptom experience in the first 100 days following allogeneic hematopoietic stem cell transplantation (HSCT). Support Care Cancer 16(11):1243–1254CrossRefGoogle Scholar
  25. 25.
    Von Ah D, Spath M, Nielsen A, Fife B (2016) The caregiver’s role across the bone marrow transplantation trajectory. Cancer Nurs 39(1):E12–E19PubMedGoogle Scholar
  26. 26.
    Lopez L, Green AR, Tan-McGrory A, King R, Betancourt JR (2011) Bridging the digital divide in health care: the role of health information technology in addressing racial and ethnic disparities. Jt Comm J Qual Patient Saf 37(10):437–445CrossRefGoogle Scholar
  27. 27.
    Kim Y, Loscalzo MJ, Wellisch DK, Spillers RL (2006) Gender differences in caregiving stress among caregivers of cancer survivors. Psychooncology 15(12):1086–1092CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Alex J. Fauer
    • 1
  • Flora Hoodin
    • 2
    • 3
  • Leah Lalonde
    • 3
  • Josh Errickson
    • 4
  • Lyndsey Runaas
    • 5
  • Tracey Churay
    • 6
  • Sajjad Seyedsalehi
    • 6
  • Casiana Warfield
    • 3
  • Grant Chappell
    • 6
  • Kristina Brookshire
    • 3
  • Dima Chaar
    • 6
  • Ji Youn Shin
    • 6
  • Michelle Byrd
    • 3
  • John Magenau
    • 5
  • David A. Hanauer
    • 6
  • Sung Won Choi
    • 6
    Email author
  1. 1.School of NursingUniversity of MichiganAnn ArborUSA
  2. 2.Department of PsychiatryUniversity of MichiganAnn ArborUSA
  3. 3.Department of PsychologyEastern Michigan UniversityYpsilantiUSA
  4. 4.Consulting for Statistics, Computing and Analytics ResearchUniversity of MichiganAnn ArborUSA
  5. 5.Department of Internal MedicineUniversity of MichiganAnn ArborUSA
  6. 6.Department of PediatricsUniversity of MichiganAnn ArborUSA

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