Patient- versus physician-reporting of symptoms and health status in chronic myeloid leukemia

The main objective of this study was to compare the reporting of health status and symptom severity, for a set of core symptoms related to imatinib therapy, between chronic myeloid leukemia patients and their treating physicians. Patients were asked to complete a questionnaire including questions on symptom severity and health status. The symptoms assessed were: abdominal discomfort, diarrhea, edema, fatigue, headache, muscle cramps, musculoskeletal pain, nausea and skin problems. The physicians were asked to complete a questionnaire for each of their patients entering the study. Four hundred twenty-two patients were included in the study. All respective paired physicians (n=29) completed the questionnaire, and thus the analyses are based on 422 patient-physician dyads. Agreement on symptom ratings ranged from 34% (for muscle cramps) to 66% (for nausea). For all symptoms, patients reported higher severity more often than their physicians. The three symptoms whose severity was most frequently underestimated by physicians were fatigue (51%), muscle cramps (49%) and musculoskeletal pain (42%). Health status was overestimated by physicians in 67% of the cases. Physicians and their patients with chronic myeloid leukemia often disagree in their ratings of the patients’ symptom severity. Most typically, physicians tend to underestimate symptom severity and overestimate the overall health status of their patients. Current findings support the use of patient-reported outcome measures as a possible means to enhance the management of patients with chronic myeloid leukemia.

[1]  G. Abel,et al.  International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: the EORTC QLQ-CML24 , 2014, Quality of Life Research.

[2]  C. Cleeland,et al.  Measuring the symptom burden associated with the treatment of chronic myeloid leukemia. , 2013, Blood.

[3]  H. Jim,et al.  Quality of life outcomes in patients with chronic myeloid leukemia treated with tyrosine kinase inhibitors: a controlled comparison , 2013, Supportive Care in Cancer.

[4]  G. Specchia,et al.  Chronic fatigue is the most important factor limiting health-related quality of life of chronic myeloid leukemia patients treated with imatinib , 2013, Leukemia.

[5]  D. Marin Initial choice of therapy among plenty for newly diagnosed chronic myeloid leukemia. , 2012, Hematology. American Society of Hematology. Education Program.

[6]  M. Baccarani,et al.  Dasatinib or imatinib in newly diagnosed chronic-phase chronic myeloid leukemia: 2-year follow-up from a randomized phase 3 trial (DASISION). , 2012, Blood.

[7]  M. Baccarani,et al.  Health-related quality of life in chronic myeloid leukemia patients receiving long-term therapy with imatinib compared with the general population. , 2011, Blood.

[8]  I. Flinn,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. , 2011, The Lancet. Oncology.

[9]  D. Marin,et al.  Exploring chronic myeloid leukemia patients' reasons for not adhering to the oral anticancer drug imatinib as prescribed. , 2011, Leukemia research.

[10]  A. Nagler,et al.  Multicenter independent assessment of outcomes in chronic myeloid leukemia patients treated with imatinib. , 2011, Journal of the National Cancer Institute.

[11]  J. Cortes,et al.  Intolerance to tyrosine kinase inhibitors in chronic myeloid leukemia , 2011, Cancer.

[12]  M. Gilbert,et al.  Clinical Cancer Advances 2013: Annual Report on Progress Against Cancer from the American Society of Clinical Oncology. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[13]  Ricardo Pasquini,et al.  Nilotinib versus imatinib for newly diagnosed chronic myeloid leukemia. , 2010, The New England journal of medicine.

[14]  D. Marin,et al.  Adherence is the critical factor for achieving molecular responses in patients with chronic myeloid leukemia who achieve complete cytogenetic responses on imatinib. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[15]  Ethan Basch,et al.  The missing voice of patients in drug-safety reporting. , 2010, The New England journal of medicine.

[16]  Alexia Iasonos,et al.  Adverse symptom event reporting by patients vs clinicians: relationships with clinical outcomes. , 2009, Journal of the National Cancer Institute.

[17]  Snootfull not at all.... , 2009 .

[18]  L. Staudt,et al.  Clinical Trials and Observations , 2007 .

[19]  N. Aaronson,et al.  Use of health‐related quality‐of‐life assessments in daily clinical oncology nursing practice , 2008, Cancer.

[20]  Thomas R. Miller,et al.  Self-Rated Health , 2008, Journal of aging and health.

[21]  Francisco Cervantes,et al.  Five-year follow-up of patients receiving imatinib for chronic myeloid leukemia. , 2006, The New England journal of medicine.

[22]  M. Kris,et al.  Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: results of a questionnaire-based study. , 2006, The Lancet. Oncology.

[23]  M. Mori,et al.  How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the Quality-of-Life Questionnaire C30. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[24]  Galina Velikova,et al.  Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[25]  S. Amadori,et al.  Cancer‐related fatigue , 2003, Cancer.

[26]  Francisco Cervantes,et al.  Imatinib compared with interferon and low-dose cytarabine for newly diagnosed chronic-phase chronic myeloid leukemia. , 2003, The New England journal of medicine.

[27]  N. Aaronson,et al.  Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. , 2002, JAMA.

[28]  C. Sherbourne,et al.  The MOS 36-Item Short-Form Health Survey (SF-36) , 1992 .

[29]  M. Kris,et al.  Clinical cancer advances 2010: annual report on progress against cancer from the American Society of Clinical Oncology. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[30]  M. Gordon Dasatinib versus Imatinib in Newly Diagnosed Chronic-Phase Chronic Myeloid Leukemia , 2010 .

[31]  M. Suarez‐Almazor,et al.  Lack of congruence in the ratings of patients' health status by patients and their physicians. , 2001, Medical decision making : an international journal of the Society for Medical Decision Making.

[32]  D. Osoba,et al.  Assessing quality of life in clinical trials. , 1993, Annals of oncology : official journal of the European Society for Medical Oncology.