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Quality of Life in the Chronic GVHD Consortium Cohort: Lessons Learned and the Long Road Ahead

  • Health Economics (N Khera, Section Editor)
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Abstract

Patient-reported outcomes are receiving increased attention as the search for successful treatment agents of chronic graft versus host disease continues. There is currently an ongoing multicenter, prospective cohort study lead by the Chronic GVHD Consortium of patients with chronic graft versus host disease. This paper summarizes published findings to date reporting factors impacting quality of life, symptom burden, and physical functioning in this cohort. Middle age, versus younger or older age, is associated with worse quality of life, despite lower symptom burden. The presence of chronic graft versus host disease at study enrollment was associated with lower quality of life, and improvement in severity does not always change quality of life. Other factors negatively impacting quality of life include the presence of overlap syndrome, specific gastrointestinal and joint and fascia manifestations, and poorer functional status and exercise tolerance. Collecting valid and concise quality of life data is essential in developing treatment strategies for chronic graft versus host disease.

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References

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  1. Lee SJ, Flowers ME. Recognizing and managing chronic graft-versus-host disease. Hematol Am Soc Hematol Educ Program. 2008;2008(1):134–41.

  2. Filipovich AH, Weisdorf D, Pavletic S, et al. National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: I. Diagnosis and staging working group report. Biol Blood Marrow Transplant. 2005;11:945–55. This paper standardizes criteria for diagnosis of GVHD and proposes the clinical scoring system currently in place to determine extent and severity of organ- and site-specific chronic GVHD as well as global assessment of chronic GVHD.

    Article  PubMed  Google Scholar 

  3. Lee SJ, Volgelsang G, Flowers ME. Chronic graft-versus-host disease. Biol Blood Marrow Transplant. 2003;9:215–33.

    Article  CAS  PubMed  Google Scholar 

  4. Azoulay E, Mokart D. Pène, et al. Outcomes of critically ill patients with hematologic malignancies: prospective multicenter data from France and Belgium—a group de recherche respiratoire en réanimation onco-hématologique study. J Clin Oncol. 2013;31(22):2810–8.

    Article  PubMed  Google Scholar 

  5. Socié G, Stone JV, Wingard JR, et al. Long-term survival and late deaths after allogeneic bone marrow transplantation. NEJM. 1999;341(1):14–21.

    Article  PubMed  Google Scholar 

  6. Sun C, Kersey JH, Francisco L, et al. Burden of morbidity in 10+ year survivors of hematopoietic cell transplantation: report from the bone marrow transplantation survivor study. Biol Blood Marrow Transplant. 2013;19(7):1073–80.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Pidala J, Anasetti C, Jim H. Quality of life after allogeneic hematopoietic cell transplantation. Blood. 2009;114(1):7–19.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  8. Kiss TL, Abdolell M, Jamal N, Minden MD, Lipton JH, Messner HA. Long-term medical outcomes and quality-of-life assessments of patients with chronic myeloid leukemia followed at least 10 years after allogeneic bone marrow transplantation. J Clin Oncol. 2002;20(9):2334–43.

    Article  CAS  PubMed  Google Scholar 

  9. Duell T. vanLint MT, Ljungman P, et al. Health and functional status of long-term survivors of bone marrow transplantation. Ann Intern Med. 1997;126(3):184–92.

    Article  CAS  PubMed  Google Scholar 

  10. Sutherland HJ, Fyles GM, Adams G, et al. Quality of life following bone marrow transplantation: a comparison of patient reports with population norms. Bone Marrow Transplant. 1997;19(11):1129–36.

    Article  CAS  PubMed  Google Scholar 

  11. Baker F, Wingard JR, Curbow B, et al. Quality of life of bone marrow transplant long-term survivors. Bone Marrow Transplant. 1994;13(5):589–96.

    CAS  PubMed  Google Scholar 

  12. Lee SJ, Cook EF, Soiffer R, Antin JH. Development and validation of a scale to measure symptoms of chronic graft-versus-host disease. Biol Blood Marrow Transplant. 2002;8:444–52.

    Article  PubMed  Google Scholar 

  13. Lee SJ, Kim HT, Ho VT, et al. Quality of life associated with acute and chronic graft-versus-host disease. Bone Marrow Transplant. 2006;38:305–10.

    Article  CAS  PubMed  Google Scholar 

  14. Baker KS, Gurney JG, Ness KK, et al. Late effects in survivors of chronic myeloid leukemia treated with hematopoietic cell transplantation: results from the bone marrow transplant survivor study. Blood. 2004;104(6):1898–906.

    Article  CAS  PubMed  Google Scholar 

  15. Fraser CJ, Bhatia S, Ness K, et al. Impact of chronic graft-versus-host disease on the health status of hematopoietic cell transplantation survivors: a report from the Bone Marrow Transplant Survivor Study. Blood. 2006;108(8):2867–73.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  16. Schulman HM, Kleiner D, Lee SJ, et al. Histopathologic diagnosis of chronic graft-versus-host disease: National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: II. Pathology working group report. Biol Blood Marrow Transplant. 2006;12:31–47.

    Article  Google Scholar 

  17. Schultz KR, Miklos DB, Fowler D, et al. Toward biomarkers for chronic graft-versus-host disease: National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: III. Biomarker working group report. Biol Blood Marrow Transplant. 2006;12:126–37.

    Article  PubMed  Google Scholar 

  18. Pavletic SZ, Martin P, Lee SJ, et al. Measuring therapeutic response in chronic graft-versus-host disease: National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: IV. Response criteria working group report. Biol Blood Marrow Transplant. 2006;12:252–66.

    Article  PubMed  Google Scholar 

  19. Couriel D, Carpenter PA, Cutler C, et al. Ancillary therapy and supportive care of chronic graft-versus-host disease: National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: V. Ancillary therapy and supportive care working group report. Biol Blood Marrow Transplant. 2006;12:375–96.

    Article  PubMed  Google Scholar 

  20. Martin PJ, Weisdorf D, Przepiorka D. National Institutes of Health consensus development project on criteria for clinical trials in chronic graft-versus-host disease: VI. Design of clinical trials working group report. Biol Blood Marrow Transplant. 2006;12:491–505.

    Article  PubMed  Google Scholar 

  21. Chronic GVHD Consortium. Rationale and design of the chronic GVHD cohort study: improving outcomes assessment in chronic GVHD. Biol Blood Marrow Transplant. 2011;17(8):1114–20. This paper describes the chronic GVHD cohort and design of the study in detail.

    Article  Google Scholar 

  22. Inamoto Y, Pidala J, Chai X, et al. Assessment of joint and fascia manifestations in chronic graft-versus-host disease. Arthritis Rheumatol. 2014;66(4):1044–52.

    Article  PubMed Central  PubMed  Google Scholar 

  23. Pidala J, Chai X, Kurland BF, et al. Analysis of gastrointestinal and hepatic chronic graft-versus-host disease manifestations on major outcomes: a chronic graft-versus-host disease consortium study. Biol Blood Marrow Transplant. 2013;19(5):784–91.

    Article  PubMed Central  PubMed  Google Scholar 

  24. Pidala J, Vogelsang G, Martin P, et al. Overlap subtype of chronic graft-versus-host disease is associated with an adverse prognosis, functional impairment, and inferior patient-reported outcomes: a chronic graft-versus-host disease consortium study. Haematologica. 2012;97(3):451–8.

    Article  PubMed Central  PubMed  Google Scholar 

  25. Pidala J, Chai X, Martin P, et al. Hand grip strength and 2-minute walk test in chronic graft-versus-host disease assessment: analysis from the chronic GVHD consortium. Biol Blood Marrow Transplant. 2013;19(6):967–72.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Pidala J, Kurland B, Chai X, et al. Patient-reported quality of life is associated with severity of chronic graft-versus-host disease as measured by NIH criteria: report on baseline data from the chronic GVHD consortium. Blood. 2011;117(17):4651–7.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  27. El-Jawahri A, Pidala J, Inamoto Y, et al. Impact of age on quality of life, functional status, and survival in patients with chronic graft-versus-host disease. Biol Blood Marrow Transplant. 2014;20:1341–8.

    Article  PubMed  Google Scholar 

  28. Inamoto Y, Martin PJ, Chai X, et al. Clinical benefit of response in chronic graft-versus-host disease. Biol Blood Marrow Transplant. 2012;18:1517–24.

    Article  PubMed Central  PubMed  Google Scholar 

  29. Pidala J, Kurland BF, Chai X, et al. Sensitivity of changes in chronic graft-versus-host disease activity to changes in patient-reported quality of life: results from the chronic graft-versus-host disease consortium. Haematologica. 2011;96(10):1528–35.

    Article  PubMed Central  PubMed  Google Scholar 

  30. Cella DF, Tulsky DS, Gray G, et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.

    CAS  PubMed  Google Scholar 

  31. McQuellon RP, Russell GB, Cella DF, et al. Quality of life measurement in bone marrow transplantation: development of the Functional Assessment of Cancer Therapy – Bone Marrow Transplant (FACT-BMT) scale.

  32. Functional Assessment of Chronic Illness Therapy. www.facit.org. Accessed February 2015.

  33. McHorney CA, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247–63.

    Article  CAS  PubMed  Google Scholar 

  34. Daughton DM, Fix AJ, Kass I, Bell CW, Patil KD. Maximum oxygen consumption and the ADAPT quality-of-life scale. Arch Phys Med Rehabil. 1982;63(12):620–2.

    CAS  PubMed  Google Scholar 

  35. Herzberg PY, Heussner P, Mumm FH, et al. Validation of the Human Activity Profile questionnaire in patients after allogeneic hematopoietic stem cell transplantation. Biol Blood Marrow Transplant. 2010;16(12):1707–17.

    Article  PubMed  Google Scholar 

  36. Baker KS, Fraser CJ. Quality of life and recovery after graft-versus-host disease. Best Pract Res Clin Haematol. 2008;21(2):333–41.

    Article  PubMed  Google Scholar 

  37. Wong FL, Francisco L, Togawa K, et al. Long-term recovery after hematopoietic cell transplantation: predictors of quality-of-life concerns. Blood. 2010;115(12):2508–19.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  38. Cleeland CS, Mendoza TR, Wang XS, et al. Assessing symptom distress in cancer patients: the M.D. Anderson Symptom Inventory. Cancer. 2000;89(7):1634–46.

    Article  CAS  PubMed  Google Scholar 

  39. Jagasia M, Giglia J, Chinratanalab W, et al. Incidence and outcome of chronic graft-versus-host disease using National Institutes of Health consensus criteria. Biol Blood Marrow Transplant. 2007;13(10):1207–15.

    Article  PubMed  Google Scholar 

  40. Vigorito AC, Campregher PV, Storer BE, et al. Evaluation of NIH consensus criteria for classification of late acute and chronic GVHD. Blood. 2009;114(3):702–8.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  41. Li L, Chan L, Gerber LH. Validation of 2-minute walk test as a measure of exercise tolerance and physical performance in patients with chronic graft versus host disease. Arch Phys Med Rehabil. 2008;89(11), e28.

    Article  Google Scholar 

  42. Hamilton BK, Rybicki L, Dabney J, et al. Quality of life and outcomes in patients ≥ 60 years of age after allogeneic hematopoietic cell transplantation. Bone Marrow Transplant. 2014;49(11):1426–31.

    Article  CAS  PubMed  Google Scholar 

  43. Deschler B, Binek K, Ihorst G, et al. Prognostic factor and quality of life analysis in 160 patients aged ≥ 60 years with hematologic neoplasias treated with allogeneic hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2010;16:967–75.

    Article  PubMed  Google Scholar 

  44. Wood WA, Lee SJ, Chai X, et al. Survival without progressive impairment as a novel endpoint in chronic graft-versus-host disease. Biol Blood Marrow Transplant. 2015;21(2):S352–3.

    Article  Google Scholar 

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Acknowledgments

The studies reviewed here were supported by grants CA118953 and CA163438 from the National Institutes of Health. The Chronic GVHD Consortium (U54 CA163438) is part of the NIH Rare Diseases Clinical Research Network, supported via collaboration between the NIH Office of Rare Diseases Research at the National Center for Advancing Translational Sciences, the National Cancer Institute, and the Fred Hutchinson Cancer Research Center.

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Conflict of Interest

Christa Krupski and Madan Jagasia each declare no potential conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors. Study protocols for the articles reviewed here were approved by the Institutional Review Board of each participating center. All participants (or their guardians) in the included studies gave written informed consent in accordance with the Declaration of Helsinki.

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Authors and Affiliations

  1. Pediatric Hematology/Oncology, Monroe Carell Jr. Children’s Hospital at Vanderbilt, Vanderbilt University Medical Center, 397 PRB, 2220 Pierce Avenue, Nashville, TN, 37232-6310, USA

    Christa Krupski

  2. Department of Medicine, Vanderbilt University Medical Center, Vanderbilt-Ingram Cancer Center, 3927 TVC, 1301 Medical Center Drive, Nashville, TN, 37232-5505, USA

    Madan Jagasia

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  1. Christa Krupski
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Correspondence to Madan Jagasia.

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This article is part of the Topical Collection on Health Economics.

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Krupski, C., Jagasia, M. Quality of Life in the Chronic GVHD Consortium Cohort: Lessons Learned and the Long Road Ahead. Curr Hematol Malig Rep 10, 183–191 (2015). https://doi.org/10.1007/s11899-015-0265-2

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  • DOI: https://doi.org/10.1007/s11899-015-0265-2

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