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Qol and Patients' Care

Prognostic understanding, quality of life and mood in patients undergoing hematopoietic stem cell transplantation

Bone Marrow Transplantation volume 50, pages 1119–1124 (2015)Cite this article

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Abstract

Little is known about how patients undergoing hematopoietic stem cell transplantation (HCT) and their family caregivers (FC) perceive their prognosis. We examined prognostic understanding in patients undergoing HCT and their FC and its relationship with quality of life (QOL) and mood. We conducted a longitudinal study of patients (and FC) hospitalized for HCT. We used a questionnaire to measure participants’ prognostic understanding and asked the oncologists to estimate patients’ prognosis prior to HCT. We assessed QOL and mood weekly and evaluated the relationship between prognostic understanding, and QOL and mood using multivariable linear mixed models. We enrolled 90 patients undergoing (autologous (n=30), myeloablative (n=30) or reduced intensity allogeneic (n=30)) HCT. About 88.9% of patients and 87.1% of FC reported it is ‘extremely’ or ‘very’ important to know about prognosis. However, 77.6% of patients and 71.7% of FC reported a discordance and more optimistic prognostic perception compared to the oncologist (P<0.0001). Patients with a concordant prognostic understanding with their oncologists reported worse QOL (β=−9.4, P=0.01) and greater depression at baseline (β=1.7, P=0.02) and over time ((β=1.2, P<0.0001). Therefore, Interventions are needed to improve prognostic understanding, while providing patients with adequate psychological support.

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References

  1. Jonsen AR, Siegler M, Winslade W . Clinical Ethics, 5th edn, McGraw-Hill: New York, NY, USA, 2002.

    Google Scholar 

  2. Faden R, Beauchamp TL . A History and Theory of Informed Consent. Oxford University Press: NY, USA, 1986.

    Google Scholar 

  3. Veatch RM . Abandoning informed consent. Hastings Cent Rep 1995; 25: 5–12.

    Article  CAS  Google Scholar 

  4. Curtis RE, Rowlings PA, Deeg HJ, Shriner DA, Socie G, Travis LB et al. Solid cancers after bone marrow transplantation. N Engl J Med 1997; 336: 897–904.

    Article  CAS  Google Scholar 

  5. Duell T, van Lint MT, Ljungman P, Tichelli A, Socie G, Apperley JF et al. Health and functional status of long-term survivors of bone marrow transplantation. EBMT Working Party on Late Effects and EULEP Study Group on Late Effects. European Group for Blood and Marrow Transplantation. Ann Int Med 1997; 126: 184–192.

    Article  CAS  Google Scholar 

  6. Gratwohl A, Baldomero H, Frauendorfer K, Urbano-Ispizua A . EBMT activity survey 2004 and changes in disease indication over the past 15 years. Bone Marrow Transplant 2006; 37: 1069–1085.

    Article  CAS  Google Scholar 

  7. Lee SJ, Joffe S, Kim HT, Socie G, Gilman AL, Wingard JR et al. Physicians' attitudes about quality-of-life issues in hematopoietic stem cell transplantation. Blood 2004; 104: 2194–2200.

    Article  CAS  Google Scholar 

  8. El-Jawahri A, Traeger L, Park ER, Greer JA, Pirl WF, Lennes IT et al. Association among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer 2013; 120: 278–285.

    Article  Google Scholar 

  9. Brundage MD, Davidson JR, Mackillop WJ . Trading treatment toxicity for survival in locally advanced non-small cell lung cancer. J Clin Oncol 1997; 15: 330–340.

    Article  CAS  Google Scholar 

  10. Hirose T, Yamaoka T, Ohnishi T, Sugiyama T, Kusumoto S, Shirai T et al. Patient willingness to undergo chemotherapy and thoracic radiotherapy for locally advanced non-small cell lung cancer. Psychooncology 2009; 18: 483–489.

    Article  Google Scholar 

  11. Silvestri G, Pritchard R, Welch HG . Preferences for chemotherapy in patients with advanced non-small cell lung cancer: descriptive study based on scripted interviews. BMJ 1998; 317: 771–775.

    Article  CAS  Google Scholar 

  12. Weeks JC, Cook EF, O'Day SJ, Peterson LM, Wenger N, Reding D et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA 1998; 279: 1709–1714.

    Article  CAS  Google Scholar 

  13. Mead N, Bower P . Patient-centredness: a conceptual framework and review of the empirical literature. Soc Sci Med 2000; 51: 1087–1110.

    Article  CAS  Google Scholar 

  14. Stiff PJ, Miller LA, Mumby P, Kiley K, Batiste R, Porter N et al. Patients' understanding of disease status and treatment plan at initial hematopoietic stem cell transplantation consultation. Bone Marrow Transplant 2006; 37: 479–484.

    Article  CAS  Google Scholar 

  15. Lee SJ, Fairclough D, Antin JH, Weeks JC . Discrepancies between patient and physician estimates for the success of stem cell transplantation. JAMA 2001; 285: 1034–1038.

    Article  CAS  Google Scholar 

  16. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011; 29: 2319–2326.

    Article  Google Scholar 

  17. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL et al. Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012; 367: 1616–1625.

    Article  CAS  Google Scholar 

  18. Shin DW, Cho J, Roter DL, Kim SY, Sohn SK, Yoon MS et al. Preferences for and experiences of family involvement in cancer treatment decision-making: patient-caregiver dyads study. Psychooncology 2013; 22: 2624–2631.

    Article  Google Scholar 

  19. Zhang AY, Siminoff LA . The role of the family in treatment decision making by patients with cancer. Oncol Nurs Forum 2003; 30: 1022–1028.

    Article  Google Scholar 

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

    Article  CAS  Google Scholar 

  21. Fife BL, Monahan PO, Abonour R, Wood LL, Stump TE . Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplant 2009; 43: 959–966.

    Article  CAS  Google Scholar 

  22. Siston AK, List MA, Daugherty CK, Banik DM, Menke C, Cornetta K et al. Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation. Bone Marrow Transplant 2001; 27: 1181–1188.

    Article  CAS  Google Scholar 

  23. Foxall MJ, Gaston-Johansson F . Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. J Adv Nurs 1996; 24: 915–923.

    Article  CAS  Google Scholar 

  24. El-Jawahri A, Traeger L, Kuzmuk K, Eusebio JR, Vandusen HB, Shin JA et al. Qualit yof life and mood of patients and family caregivers during hospitalization for hematopoietic stem cell transplantation. Cancer 2014; 121: 951–959.

    Article  Google Scholar 

  25. Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC . Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 2006; 24: 5265–5270.

    Article  Google Scholar 

  26. 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: 2912–2919.

    Article  CAS  Google Scholar 

  27. McQuellon RP, Russell GB, Cella DF, Craven BL, Brady M, Bonomi A et al. Quality of life measurement in bone marrow transplantation: development of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) scale. Bone Marrow Transplant 1997; 19: 357–368.

    Article  CAS  Google Scholar 

  28. Santana MJ, Au HJ, Dharma-Wardene M, Hewitt JD, Dupere D, Hanson J et al. Health-related quality of life measures in routine clinical care: can FACT-fatigue help to assess the management of fatigue in cancer patients? Int J Technol Assess Health Care 2009; 25: 90–96.

    Article  Google Scholar 

  29. Brazier JE, Harper R, Jones NM, O'Cathain A, Thomas KJ, Usherwood T et al. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ 1992; 305: 160–164.

    Article  CAS  Google Scholar 

  30. Zigmond AS, Snaith RP . The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67: 361–370.

    Article  CAS  Google Scholar 

  31. Kroenke K, Spitzer RL, Williams JB . The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001; 16: 606–613.

    Article  CAS  Google Scholar 

  32. Gattellari M, Voigt KJ, Butow PN, Tattersall MH . When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 2002; 20: 503–513.

    Article  Google Scholar 

  33. Hagerty RG, Butow PN, Ellis PA, Lobb EA, Pendlebury S, Leighl N et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol 2004; 22: 1721–1730.

    Article  Google Scholar 

  34. Krishnan M, Temel JS, Wright AA, Bernacki R, Selvaggi K, Balboni T . Predicting life expectancy in patients with advanced incurable cancer: a review. J Support Oncol 2013; 11: 68–74.

    Article  Google Scholar 

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Acknowledgements

This work was supported by funds from the MGH Cancer Center and K24 CA 181253 (Temel).

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Authors and Affiliations

  1. Department of Hematology Oncology–Bone Marrow Transplant Program, Massachusetts General Hospital, Boston,, MA, USA

    A El-Jawahri, L Traeger, K Kuzmuk, J Eusebio, H Vandusen, T Keenan, J Shin, E R Gallagher, J A Greer, W F Pirl, V A Jackson, K K Ballen, T R Spitzer, T A Graubert, S McAfee, B Dey, Y-B A Chen & J S Temel

  2. Harvard Medical School, Boston,, MA, USA

    A El-Jawahri, L Traeger, J Eusebio, H Vandusen, T Keenan, J Shin, E R Gallagher, J A Greer, W F Pirl, V A Jackson, K K Ballen, T R Spitzer, T A Graubert, S McAfee, B Dey, Y-B A Chen & J S Temel

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  1. A El-Jawahri
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Correspondence to A El-Jawahri.

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El-Jawahri, A., Traeger, L., Kuzmuk, K. et al. Prognostic understanding, quality of life and mood in patients undergoing hematopoietic stem cell transplantation. Bone Marrow Transplant 50, 1119–1124 (2015). https://doi.org/10.1038/bmt.2015.113

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