Skip to main content

Advertisement

SpringerLink
Log in

The Value of Patient Reported Outcomes and Other Patient-Generated Health Data in Clinical Hematology

  • Health Economics (N Khera, Section Editor)
  • Published:
Current Hematologic Malignancy Reports Aims and scope Submit manuscript

Abstract

With cures and long-term survival rates increasing in hematologic malignancies, increased focus has been placed on gaining a better understanding of the patient experience from disease and treatment effects. This has been the basis for the utilization of patient reported outcomes (PRO) and other patient-generated health data (PGHD) in efforts to improve long-term health-related quality of life (HRQOL). This review will summarize the impact PROs have had on the evolving standard of care for patients with hematologic malignant conditions and will conclude with a template for the integration of PRO and PGHD to enhance the patient experience, using stem cell transplantation as an example.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance

  1. Efficace F, Novik A, Vignetti M, Mandelli F, Cleeland CS. Health-related quality of life and symptom assessment in clinical research of patients with hematologic malignancies: where are we now and where do we go from here? Haematologica. 2007;92(12):1596–8.

    Article  PubMed  Google Scholar 

  2. Cheng KK, Yeung RM. Impact of mood disturbance, sleep disturbance, fatigue and pain among patients receiving cancer therapy. Eur J Cancer Care (Engl). 2013;22(1):70–8.

    Article  CAS  Google Scholar 

  3. Peteet JR, Balboni MJ. Spirituality and religion in oncology. CA Cancer J Clin. 2013;63(4):280–9.

    Article  PubMed  Google Scholar 

  4. Spiegel D, Riba MB, DeVita VT, Lawrence TS, Rosenberg SA. In: DeVita H, editor. Rosenberg’s cancer: principles & practice of oncology. 9th ed. Philadelphia: LIPPINCOTT WILLIAMS & WILKINS; 2011. p. 2467–76.

    Google Scholar 

  5. Badr H, Chandra J, Paxton RJ, Ater JL, Urbauer D, Cruz CS, et al. Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer. J Cancer Surviv. 2013;7(4):523–34.

    Article  PubMed  Google Scholar 

  6. United States Department of Health and Human Services Food and Drug Administration. Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. http://www.fda.gov/downloads/Drugs/Guidances/UCM193282.pdf. Accessed Feb 1 2015: United States Department of Health and Human Services Food and Drug Administration; 2009 December 2009.

  7. Oliva EN, Finelli C, Santini V, Poloni A, Liso V, Cilloni D, et al. Quality of life and physicians’ perception in myelodysplastic syndromes. Am J Blood Res. 2012;2(2):136–47.

    PubMed Central  PubMed  Google Scholar 

  8. Efficace F, Rosti G, Aaronson N, Cottone F, Angelucci E, Molica S, et al. Patient- versus physician-reporting of symptoms and health status in chronic myeloid leukemia. Haematologica. 2014;99(4):788–93.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Guidelines Patient-Reported Outcomes in Hematology. 1st ed. Novik A, Salek S, Ionova T, editors. The Hague, The Netherlands: European Hematology Association Scientific Working Group “Quality of Life and Symptoms”; 2012. Guidelines published by the EHA, details the standards for acceptance and validation of PRO, and reviews and summarizes PROs by hematologic condition both benign and malignant, along with brief description of each PRO.

  10. Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res. 2013 Jun 11;13:211,6963-13-211.

  11. Basch E, Abernethy AP, Mullins CD, Reeve BB, Smith ML, Coons SJ, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34):4249–55. Describes general recommendations for use of PRO in clinical oncology research when comparing effectiveness of therapeutics. Table 2 shows PROs specifically recommended based on prior use in oncology trials and compares based on symptoms assessed.

    Article  PubMed  Google Scholar 

  12. Ediebah DE, Coens C, Zikos E, Quinten C, Ringash J, King MT, et al. Does change in health-related quality of life score predict survival? Analysis of EORTC 08975 lung cancer trial. Br J Cancer. 2014;110(10):2427–33.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  13. Shapiro M, Johnston D, Wald J, Mon D. Patient-generated Health Data: White Paper Prepared for the Office of the National Coordinator for Health it by RTI International. Available at http://www.rti.org/pubs/patientgeneratedhealthdata.pdf. RTI International 3040 Cornwallis Road Research Triangle Park, NC 27709: RTI international; 2012 April 2012.

  14. Wood WA, Bennett AV, Basch E. Emerging uses of patient generated health data in clinical research. Mol Oncol. 2014 Aug 27. Summarizes patient generated health data, identifies new datastream sources and quantifiable measures, and describes its potential applications in clinical trials and oncology.

  15. Shah ND, Pathak J. Why Health Care May Finally be Ready for Big Data. Harvard Business Review. 2014 December 3, 2014;https://hbr.org/2014/12/why-health-care-may-finally-be-ready-for-big-data.

  16. Efficace F, Breccia M, Saussele S, Kossak-Roth U, Cardoni A, Caocci G, et al. Which health-related quality of life aspects are important to patients with chronic myeloid leukemia receiving targeted therapies and to health care professionals? GIMEMA and EORTC Quality of Life Group. Ann Hematol. 2012;91(9):1371–81.

    Article  PubMed  Google Scholar 

  17. Di Maio M, Gallo C, Leighl NB, Piccirillo MC, Daniele G, Nuzzo F, et al. Symptomatic Toxicities Experienced During Anticancer Treatment: Agreement Between Patient and Physician Reporting in Three Randomized Trials. J Clin Oncol. 2015 Jan 26.

  18. Cocks K, Cohen D, Wisloff F, Sezer O, Lee S, Hippe E, et al. An international field study of the reliability and validity of a disease-specific questionnaire module (the QLQ-MY20) in assessing the quality of life of patients with multiple myeloma. Eur J Cancer. 2007;43(11):1670–8.

    Article  CAS  PubMed  Google Scholar 

  19. Dammacco F, Castoldi G, Rodjer S. Efficacy of epoetin alfa in the treatment of anaemia of multiple myeloma. Br J Haematol. 2001;113(1):172–9.

    Article  CAS  PubMed  Google Scholar 

  20. Kvam AK, Fayers P, Hjermstad M, Gulbrandsen N, Wisloff F. Health-related quality of life assessment in randomised controlled trials in multiple myeloma: a critical review of methodology and impact on treatment recommendations. Eur J Haematol. 2009;83(4):279–89.

    Article  PubMed  Google Scholar 

  21. Hedenus M, Adriansson M, San Miguel J, Kramer MH, Schipperus MR, Juvonen E, et al. Efficacy and safety of darbepoetin alfa in anaemic patients with lymphoproliferative malignancies: a randomized, double-blind, placebo-controlled study. Br J Haematol. 2003;122(3):394–403.

    Article  CAS  PubMed  Google Scholar 

  22. Jansen AJ, Essink-Bot ML, Beckers EA, Hop WC, Schipperus MR, Van Rhenen DJ. Quality of life measurement in patients with transfusion-dependent myelodysplastic syndromes. Br J Haematol. 2003;121(2):270–4.

    Article  CAS  PubMed  Google Scholar 

  23. Clavio M, Nobili F, Balleari E, Girtler N, Ballerini F, Vitali P, et al. Quality of life and brain function following high-dose recombinant human erythropoietin in low-risk myelodysplastic syndromes: a preliminary report. Eur J Haematol. 2004;72(2):113–20.

    Article  CAS  PubMed  Google Scholar 

  24. Spiriti MA, Latagliata R, Niscola P, Cortelezzi A, Francesconi M, Ferrari D, et al. Impact of a new dosing regimen of epoetin alfa on quality of life and anemia in patients with low-risk myelodysplastic syndrome. Ann Hematol. 2005;84(3):167–76.

    Article  CAS  PubMed  Google Scholar 

  25. O’Brien SG, Guilhot F, Larson RA, Gathmann I, Baccarani M, Cervantes F, et al. Imatinib compared with interferon and low-dose cytarabine for newly diagnosed chronic-phase chronic myeloid leukemia. N Engl J Med. 2003;348(11):994–1004.

    Article  PubMed  Google Scholar 

  26. Homewood J, Watson M, Richards SM, Halsey J, Shepherd PC. Adult Leukaemia Working Party. Treatment of CML using IFN-alpha: impact on quality of life. Hematol J. 2003;4(4):253–62.

    Article  CAS  PubMed  Google Scholar 

  27. Hahn EA, Glendenning GA, Sorensen MV, Hudgens SA, Druker BJ, Guilhot F, et al. Quality of life in patients with newly diagnosed chronic phase chronic myeloid leukemia on imatinib versus interferon alfa plus low-dose cytarabine: results from the IRIS Study. J Clin Oncol. 2003;21(11):2138–46.

    Article  CAS  PubMed  Google Scholar 

  28. Kantarjian HM, Hochhaus A, Saglio G, De Souza C, Flinn IW, Stenke L, et al. Nilotinib versus imatinib for the treatment of patients with newly diagnosed chronic phase, Philadelphia chromosome-positive, chronic myeloid leukaemia: 24-month minimum follow-up of the phase 3 randomised ENESTnd trial. Lancet Oncol. 2011;12(9):841–51.

    Article  CAS  PubMed  Google Scholar 

  29. Jabbour E, Kantarjian HM, Saglio G, Steegmann JL, Shah NP, Boque C, et al. Early response with dasatinib or imatinib in chronic myeloid leukemia: 3-year follow-up from a randomized phase 3 trial (DASISION). Blood. 2014;123(4):494–500.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  30. Heaney ML. Sequencing treatment in chronic myeloid leukemia: the first choice may be the hardest. Clin Adv Hematol Oncol. 2014;12(8):502–8.

    PubMed  Google Scholar 

  31. Phillips KM, Pinilla-Ibarz J, Sotomayor E, Lee MR, Jim HS, Small BJ, et al. Quality of life outcomes in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparison. Support Care Cancer. 2013;21(4):1097–103.

    Article  PubMed  Google Scholar 

  32. Efficace F, Cardoni A, Cottone F, Vignetti M, Mandelli F. Tyrosine-kinase inhibitors and patient-reported outcomes in chronic myeloid leukemia: a systematic review. Leuk Res. 2013;37(2):206–13.

    Article  CAS  PubMed  Google Scholar 

  33. Hirji I, Gupta S, Goren A, Chirovsky DR, Moadel AB, Olavarria E, et al. Chronic myeloid leukemia (CML): association of treatment satisfaction, negative medication experience and treatment restrictions with health outcomes, from the patient’s perspective. Health Qual Life Outcomes. 2013 Oct 8;11:167,7525-11-167.

  34. Wisloff F, Hjorth M. Health-related quality of life assessed before and during chemotherapy predicts for survival in multiple myeloma. Nordic Myeloma Study Group. Br J Haematol. 1997;97(1):29–37.

    Article  CAS  PubMed  Google Scholar 

  35. Lee SJ, Richardson PG, Sonneveld P, Schuster MW, Irwin D, San Miguel JF, et al. Bortezomib is associated with better health-related quality of life than high-dose dexamethasone in patients with relapsed multiple myeloma: results from the APEX study. Br J Haematol. 2008;143(4):511–9.

    CAS  PubMed  Google Scholar 

  36. Delforge M, Dhawan R, Robinson Jr D, Meunier J, Regnault A, Esseltine DL, et al. Health-related quality of life in elderly, newly diagnosed multiple myeloma patients treated with VMP vs. MP: results from the VISTA trial. Eur J Haematol. 2012;89(1):16–27.

    Article  CAS  PubMed  Google Scholar 

  37. Sonneveld P, Verelst SG, Lewis P, Gray-Schopfer V, Hutchings A, Nixon A, et al. Review of health-related quality of life data in multiple myeloma patients treated with novel agents. Leukemia. 2013;27(10):1959–69.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  38. Barbee MS, Harvey RD, Lonial S, Kaufman JL, Wilson NM, McKibbin T, et al. Subcutaneous versus intravenous bortezomib: efficiency practice variables and patient preferences. Ann Pharmacother. 2013;47(9):1136–42.

    Article  PubMed  Google Scholar 

  39. Moreau P, Pylypenko H, Grosicki S, Karamanesht I, Leleu X, Grishunina M, et al. Subcutaneous versus intravenous administration of bortezomib in patients with relapsed multiple myeloma: a randomised, phase 3, non-inferiority study. Lancet Oncol. 2011;12(5):431–40.

    Article  PubMed  Google Scholar 

  40. Waage A, Gimsing P, Fayers P, Abildgaard N, Ahlberg L, Bjorkstrand B, et al. Melphalan and prednisone plus thalidomide or placebo in elderly patients with multiple myeloma. Blood. 2010;116(9):1405–12.

    Article  CAS  PubMed  Google Scholar 

  41. Stewart AK, Trudel S, Bahlis NJ, White D, Sabry W, Belch A, et al. A randomized phase 3 trial of thalidomide and prednisone as maintenance therapy after ASCT in patients with MM with a quality-of-life assessment: the National Cancer Institute of Canada Clinicals Trials Group Myeloma 10 Trial. Blood. 2013;121(9):1517–23.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  42. Dimopoulos MA, Delforge M, Hajek R, Kropff M, Petrucci MT, Lewis P, et al. Lenalidomide, melphalan, and prednisone, followed by lenalidomide maintenance, improves health-related quality of life in newly diagnosed multiple myeloma patients aged 65 years or older: results of a randomized phase III trial. Haematologica. 2013;98(5):784–8.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  43. Dimopoulos MA, Palumbo A, Hajek R, Kropff M, Petrucci MT, Lewis P, et al. Factors that influence health-related quality of life in newly diagnosed patients with multiple myeloma aged >/= 65 years treated with melphalan, prednisone and lenalidomide followed by lenalidomide maintenance: results of a randomized trial. Leuk Lymphoma. 2014;55(7):1489–97.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  44. Benboubker L, Dimopoulos MA, Dispenzieri A, Catalano J, Belch AR, Cavo M, et al. Lenalidomide and dexamethasone in transplant-ineligible patients with myeloma. N Engl J Med. 2014;371(10):906–17.

    Article  CAS  PubMed  Google Scholar 

  45. Lo-Coco F, Avvisati G, Vignetti M, Thiede C, Orlando SM, Iacobelli S, et al. Retinoic acid and arsenic trioxide for acute promyelocytic leukemia. N Engl J Med. 2013;369(2):111–21.

    Article  CAS  PubMed  Google Scholar 

  46. Efficace F, Mandelli F, Avvisati G, Cottone F, Ferrara F, Di Bona E, et al. Randomized phase III trial of retinoic acid and arsenic trioxide versus retinoic acid and chemotherapy in patients with acute promyelocytic leukemia: health-related quality-of-life outcomes. J Clin Oncol. 2014;32(30):3406–12.

    Article  CAS  PubMed  Google Scholar 

  47. Mesa RA, Schwager S, Radia D, Cheville A, Hussein K, Niblack J, et al. The Myelofibrosis Symptom Assessment Form (MFSAF): an evidence-based brief inventory to measure quality of life and symptomatic response to treatment in myelofibrosis. Leuk Res. 2009;33(9):1199–203.

    Article  PubMed Central  PubMed  Google Scholar 

  48. Verstovsek S, Mesa RA, Gotlib J, Levy RS, Gupta V, DiPersio JF, et al. A double-blind, placebo-controlled trial of ruxolitinib for myelofibrosis. N Engl J Med. 2012;366(9):799–807.

    Article  CAS  PubMed  Google Scholar 

  49. Mesa RA, Gotlib J, Gupta V, Catalano JV, Deininger MW, Shields AL, et al. Effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: a randomized, double-blind, placebo-controlled trial. J Clin Oncol. 2013;31(10):1285–92.

    Article  CAS  PubMed  Google Scholar 

  50. Harrison CN, Mesa RA, Kiladjian JJ, Al-Ali HK, Gisslinger H, Knoops L, et al. Health-related quality of life and symptoms in patients with myelofibrosis treated with ruxolitinib versus best available therapy. Br J Haematol. 2013;162(2):229–39.

    Article  CAS  PubMed  Google Scholar 

  51. Cervantes F, Vannucchi AM, Kiladjian JJ, Al-Ali HK, Sirulnik A, Stalbovskaya V, et al. Three-year efficacy, safety, and survival findings from COMFORT-II, a phase 3 study comparing ruxolitinib with best available therapy for myelofibrosis. Blood. 2013;122(25):4047–53.

    Article  CAS  PubMed  Google Scholar 

  52. Deisseroth A, Kaminskas E, Grillo J, Chen W, Saber H, Lu HL, et al. U.S. Food and Drug Administration approval: ruxolitinib for the treatment of patients with intermediate and high-risk myelofibrosis. Clin Cancer Res. 2012;18(12):3212–7.

    Article  CAS  PubMed  Google Scholar 

  53. Basch E. Toward patient-centered drug development in oncology. N Engl J Med. 2013;369(5):397–400. Highlighting the role and need for PRO in cancer drug development today.

    Article  CAS  PubMed  Google Scholar 

  54. Ma X. Epidemiology of myelodysplastic syndromes. Am J Med. 2012;125(7 Suppl):S2–5.

    Article  PubMed Central  PubMed  Google Scholar 

  55. Caocci G, La Nasa G, Efficace F. Health-related quality of life and symptom assessment in patients with myelodysplastic syndromes. Expert Rev Hematol. 2009;2(1):69–80.

    Article  PubMed  Google Scholar 

  56. Stasi R, Abruzzese E, Lanzetta G, Terzoli E, Amadori S. Darbepoetin alfa for the treatment of anemic patients with low- and intermediate-1-risk myelodysplastic syndromes. Ann Oncol. 2005;16(12):1921–7.

    Article  CAS  PubMed  Google Scholar 

  57. Silverman LR, Demakos EP, Peterson BL, Kornblith AB, Holland JC, Odchimar-Reissig R, et al. Randomized controlled trial of azacitidine in patients with the myelodysplastic syndrome: a study of the cancer and leukemia group B. J Clin Oncol. 2002;20(10):2429–40.

    Article  CAS  PubMed  Google Scholar 

  58. Kornblith AB, Herndon JE,2nd, Silverman LR, Demakos EP, Odchimar-Reissig R, Holland JF, et al. Impact of azacytidine on the quality of life of patients with myelodysplastic syndrome treated in a randomized phase III trial: a Cancer and Leukemia Group B study. J Clin Oncol. 2002 May 15;20(10):2441–52.

  59. Kantarjian H, Issa JP, Rosenfeld CS, Bennett JM, Albitar M, DiPersio J, et al. Decitabine improves patient outcomes in myelodysplastic syndromes: results of a phase III randomized study. Cancer. 2006;106(8):1794–803.

    Article  CAS  PubMed  Google Scholar 

  60. Lubbert M, Suciu S, Baila L, Ruter BH, Platzbecker U, Giagounidis A, et al. Low-dose decitabine versus best supportive care in elderly patients with intermediate- or high-risk myelodysplastic syndrome (MDS) ineligible for intensive chemotherapy: final results of the randomized phase III study of the European Organisation for Research and Treatment of Cancer Leukemia Group and the German MDS Study Group. J Clin Oncol. 2011;29(15):1987–96.

    Article  PubMed  Google Scholar 

  61. Abel GA, Efficace F, Tinsley S, J, J.G., Martins Y, Steensma DP, et al. Preliminary International Validation of the Quality of Life in Myelodysplasia Scale (QUALMS). 56th Annual ASH Meeting and Exposition; December 6–9, 2014; San Francisco, CA.; 2014.

  62. Abel GA, Klaassen R, Lee SJ, Young NL, Cannella L, Steensma DP, et al. Patient-reported outcomes for the myelodysplastic syndromes: a new MDS-specific measure of quality of life. Blood. 2014;123(3):451–2.

    Article  CAS  PubMed  Google Scholar 

  63. Gotay CC, Kawamoto CT, Bottomley A, Efficace F. The prognostic significance of patient-reported outcomes in cancer clinical trials. J Clin Oncol. 2008;26(8):1355–63.

    Article  PubMed  Google Scholar 

  64. Wood W, Le-Rademacher J, Fei M, Logan B, Syrjala K, Majhail N, et al. Patient-Reported Quality of Life Is an Independent Predictor of Survival after Allogeneic Hematopoietic Cell Transplantation: A Secondary Analysis from the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) 0902. 56th ASH Annual Meeting and Exposition; December 6–9, 2014; San Francisco, California.; 2014.

  65. Thompson C, Maurer M, Allmer C, Slager S, Yost K, Macon W, et al. Quality of Life at Diagnosis Independently Predicts Survival in Patients with Aggressive Lymphoma. 56th ASH Annual Meeting and Exposition; December 6–9, @014; San Francisco, California.; 2014.

  66. Sjoberg J, Halthur C, Kristinsson SY, Landgren O, Nygell UA, Dickman PW, et al. Progress in Hodgkin lymphoma: a population-based study on patients diagnosed in Sweden from 1973–2009. Blood. 2012;119(4):990–6.

    Article  PubMed  Google Scholar 

  67. Bouliotis G, Bessell EM. Hodgkin disease (1973–2002): long-term survival and cure fractions. Leuk Lymphoma. 2014;9:1–8.

    Google Scholar 

  68. Ganz PA, Moinpour CM, Pauler DK, Kornblith AB, Gaynor ER, Balcerzak SP, et al. Health status and quality of life in patients with early-stage Hodgkin’s disease treated on Southwest Oncology Group Study 9133. J Clin Oncol. 2003;21(18):3512–9.

    Article  PubMed  Google Scholar 

  69. van Tulder MW, Aaronson NK, Bruning PF. The quality of life of long-term survivors of Hodgkin’s disease. Ann Oncol. 1994;5(2):153–8.

    PubMed  Google Scholar 

  70. Greaves P, Sarker SJ, Chowdhury K, Johnson R, Matthews J, Matthews R, et al. Fertility and sexual function in long-term survivors of haematological malignancy: using patient-reported outcome measures to assess a neglected area of need in the late effects clinic. Br J Haematol. 2014;164(4):526–35.

    Article  PubMed  Google Scholar 

  71. Leunis A, Redekop WK, Uyl-de Groot CA, Lowenberg B. Impaired health-related quality of life in acute myeloid leukemia survivors: a single-center study. Eur J Haematol. 2014;93(3):198–206.

    PubMed  Google Scholar 

  72. Langeveld NE, Stam H, Grootenhuis MA, Last BF. Quality of life in young adult survivors of childhood cancer. Support Care Cancer. 2002;10(8):579–600.

    Article  CAS  PubMed  Google Scholar 

  73. Reed SD, Anstrom KJ, Ludmer JA, Glendenning GA, Schulman KA. Cost-effectiveness of imatinib versus interferon-alpha plus low-dose cytarabine for patients with newly diagnosed chronic-phase chronic myeloid leukemia. Cancer. 2004;101(11):2574–83.

    Article  PubMed  Google Scholar 

  74. Hornberger J, Rickert J, Dhawan R, Liwing J, Aschan J, Lothgren M. The cost-effectiveness of bortezomib in relapsed/refractory multiple myeloma: Swedish perspective. Eur J Haematol. 2010;85(6):484–91.

    Article  CAS  PubMed  Google Scholar 

  75. Zafar SY, Abernethy AP. Financial toxicity, Part I: a new name for a growing problem. Oncology (Williston Park). 2013 Feb;27(2):80,1, 149.

  76. de Souza JA, Yap BJ, Hlubocky FJ, Wroblewski K, Ratain MJ, Cella D, et al. The development of a financial toxicity patient-reported outcome in cancer: the COST measure. Cancer. 2014;120(20):3245–53.

    Article  PubMed  Google Scholar 

  77. Sorror M, Storer B, Sandmaier BM, Maloney DG, Chauncey TR, Langston A, et al. Hematopoietic cell transplantation-comorbidity index and Karnofsky performance status are independent predictors of morbidity and mortality after allogeneic nonmyeloablative hematopoietic cell transplantation. Cancer. 2008;112(9):1992–2001.

    Article  PubMed  Google Scholar 

  78. Sorror ML, Maris MB, Storb R, Baron F, Sandmaier BM, Maloney DG, et al. Hematopoietic cell transplantation (HCT)-specific comorbidity index: a new tool for risk assessment before allogeneic HCT. Blood. 2005;106(8):2912–9.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  79. Gratwohl A. The EBMT risk score. Bone Marrow Transplant. 2012;47(6):749–56.

    Article  CAS  PubMed  Google Scholar 

  80. Broderick JM, Hussey J, Kennedy MJ, O’Donnell DM. Patients over 65 years are assigned lower ECOG PS scores than younger patients, although objectively measured physical activity is no different. J Geriatr Oncol. 2014;5(1):49–56.

    Article  PubMed  Google Scholar 

  81. Wood WA, Deal AM, Reeve BB, Abernethy AP, Basch E, Mitchell SA, et al. Cardiopulmonary fitness in patients undergoing hematopoietic SCT: a pilot study. Bone Marrow Transplant. 2013;48(10):1342–9.

    Article  CAS  PubMed  Google Scholar 

  82. Kelsey CR, Scott JM, Lane A, Schwitzer E, West MJ, Thomas S, et al. Cardiopulmonary exercise testing prior to myeloablative allo-SCT: a feasibility study. Bone Marrow Transplant. 2014;49(10):1330–6.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  83. Broderick JM, Ryan J, O’Donnell DM, Hussey J. A guide to assessing physical activity using accelerometry in cancer patients. Support Care Cancer. 2014;22(4):1121–30.

    Article  CAS  PubMed  Google Scholar 

  84. Takacs J, Pollock CL, Guenther JR, Bahar M, Napier C, Hunt MA. Validation of the Fitbit One activity monitor device during treadmill walking. J Sci Med Sport. 2014;17(5):496–500.

    Article  PubMed  Google Scholar 

  85. Adam Noah J, Spierer DK, Gu J, Bronner S. Comparison of steps and energy expenditure assessment in adults of Fitbit Tracker and Ultra to the Actical and indirect calorimetry. J Med Eng Technol. 2013;37(7):456–62.

    Article  CAS  PubMed  Google Scholar 

  86. Lee PH, Nan H, Yu YY, McDowell I, Leung GM, Lam TH. For non-exercising people, the number of steps walked is more strongly associated with health than time spent walking. J Sci Med Sport. 2013;16(3):227–30.

    Article  PubMed  Google Scholar 

  87. Jim HS, Evans B, Jeong JM, Gonzalez BD, Johnston L, Nelson AM, et al. Sleep disruption in hematopoietic cell transplantation recipients: prevalence, severity, and clinical management. Biol Blood Marrow Transplant. 2014;20(10):1465–84.

    Article  PubMed  Google Scholar 

  88. Rischer J, Scherwath A, Zander AR, Koch U, Schulz-Kindermann F. Sleep disturbances and emotional distress in the acute course of hematopoietic stem cell transplantation. Bone Marrow Transplant. 2009;44(2):121–8.

    Article  CAS  PubMed  Google Scholar 

  89. Nelson AM, Coe CL, Juckett MB, Rumble ME, Rathouz PJ, Hematti P, et al. Sleep quality following hematopoietic stem cell transplantation: longitudinal trajectories and biobehavioral correlates. Bone Marrow Transplant. 2014;49(11):1405–11.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  90. Weiss AR, Johnson NL, Berger NA, Redline S. Validity of activity-based devices to estimate sleep. J Clin Sleep Med. 2010;6(4):336–42.

    PubMed Central  PubMed  Google Scholar 

  91. Wang XS, Shi Q, Shah ND, Heijnen CJ, Cohen EN, Reuben JM, et al. Inflammatory markers and development of symptom burden in patients with multiple myeloma during autologous stem cell transplantation. Clin Cancer Res. 2014;20(5):1366–74.

    Article  PubMed Central  CAS  PubMed  Google Scholar 

  92. Hjermstad MJ, Knobel H, Brinch L, Fayers PM, Loge JH, Holte H, et al. A prospective study of health-related quality of life, fatigue, anxiety and depression 3–5 years after stem cell transplantation. Bone Marrow Transplant. 2004;34(3):257–66.

    Article  CAS  PubMed  Google Scholar 

  93. Pallua S, Giesinger J, Oberguggenberger A, Kemmler G, Nachbaur D, Clausen J, et al. Impact of GvHD on quality of life in long-term survivors of haematopoietic transplantation. Bone Marrow Transplant. 2010;45(10):1534–9.

    Article  CAS  PubMed  Google Scholar 

  94. Keogh F, O’Riordan J, McNamara C, Duggan C, McCann SR. Psychosocial adaptation of patients and families following bone marrow transplantation: a prospective, longitudinal study. Bone Marrow Transplant. 1998;22(9):905–11.

    Article  CAS  PubMed  Google Scholar 

  95. Kopp M, Holzner B, Meraner V, Sperner-Unterweger B, Kemmler G, Nguyen-Van-Tam DP, et al. Quality of life in adult hematopoietic cell transplant patients at least 5 yr after treatment: a comparison with healthy controls. Eur J Haematol. 2005;74(4):304–8.

    Article  PubMed  Google Scholar 

  96. Gifford G, Sim J, Horne A, Ma D. Health status, late effects and long-term survivorship of allogeneic bone marrow transplantation: a retrospective study. Intern Med J. 2014;44(2):139–47.

    Article  CAS  PubMed  Google Scholar 

  97. Sarkar S, Scherwath A, Schirmer L, Schulz-Kindermann F, Neumann K, Kruse M, et al. Fear of recurrence and its impact on quality of life in patients with hematological cancers in the course of allogeneic hematopoietic SCT. Bone Marrow Transplant. 2014;49(9):1217–22.

    Article  CAS  PubMed  Google Scholar 

  98. Amin EN, Phillips GS, Elder P, Jaglowski S, Devine SM, Wood KL. Health-related quality of life in patients who develop bronchiolitis obliterans syndrome following allo-SCT. Bone Marrow Transplant. 2014 Nov 24.

  99. Wood WA, Deal AM, Abernethy A, Basch E, Battaglini C, Kim YH, et al. Feasibility of frequent patient-reported outcome surveillance in patients undergoing hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2013;19(3):450–9.

    Article  PubMed Central  PubMed  Google Scholar 

  100. Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky AL, Roberts AC, et al. Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract. 2014;10(4):e215–22.

    Article  PubMed Central  PubMed  Google Scholar 

  101. Basch EM, Reeve BB, Mitchell SA, Clauser SB, Minasian L, Sit L, et al. Electronic toxicity monitoring and patient-reported outcomes. Cancer J. 2011;17(4):231–4.

    Article  PubMed  Google Scholar 

  102. Moore HK, Santibanez ME, Denzen EM, Carr DW, Murphy EA. Barriers to accessing health care for hematopoietic cell transplantation recipients living in rural areas: perspectives from healthcare providers. Clin J Oncol Nurs. 2013;17(4):405–11.

    Article  PubMed  Google Scholar 

Download references

Compliance with Ethics Guidelines

Conflict of Interest

Hemant S. Murthy and William A. Wood 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.

Author information

Authors and Affiliations

  1. Brody School of Medicine, East Carolina University, 600 Moye Blvd, Greenville, NC, 27834, USA

    Hemant S. Murthy

  2. Division of Hematology/Oncology, UNC Lineberger Cancer Center, 101 Manning Drive, Chapel Hill, NC, 27514, USA

    William A. Wood

Authors
  1. Hemant S. Murthy
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. William A. Wood
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to William A. Wood.

Additional information

This article is part of the Topical Collection on Health Economics

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Murthy, H.S., Wood, W.A. The Value of Patient Reported Outcomes and Other Patient-Generated Health Data in Clinical Hematology. Curr Hematol Malig Rep 10, 213–224 (2015). https://doi.org/10.1007/s11899-015-0261-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11899-015-0261-6

Keywords

Search

Navigation