| Literature DB >> 27690182 |
Ruben A Mesa1, Carole B Miller2, Maureen Thyne3, James Mangan4, Sara Goldberger5, Salman Fazal6, Xiaomei Ma7, Wendy Wilson8, Dilan C Paranagama9, David G Dubinski10, Ahmad Naim10, Shreekant Parasuraman10, John Boyle11, John O Mascarenhas12.
Abstract
BACKGROUND: This analysis of the myeloproliferative neoplasm (MPN) Landmark survey evaluated gaps between patient perceptions of their disease management and physician self-reported practices.Entities:
Keywords: communication; essential thrombocythemia; health care surveys; myeloproliferative disorder; patients; physicians; polycythemia vera; primary myelofibrosis; questionnaires
Mesh:
Year: 2016 PMID: 27690182 PMCID: PMC5297986 DOI: 10.1002/cncr.30325
Source DB: PubMed Journal: Cancer ISSN: 0008-543X Impact factor: 6.860
Characteristics of Patient Respondents With Myeloproliferative Neoplasmsa
| No. of Respondents (%) | |||
|---|---|---|---|
| Characteristic | MF, n = 207 | PV, n = 380 | ET, n = 226 |
| Age: Median [range], y | 66 [28‐90] | 64 [25‐94] | 62 [23‐87] |
| Women | 112 (54) | 237 (62) | 163 (72) |
| Race | |||
| White | 203 (98) | 371 (98) | 221 (98) |
| Black | 2 (1) | 3 (1) | 2 (1) |
| Asian | 1 (<1) | 4 (1) | 2 (1) |
| Unknown | 1 (<1) | 2 (1) | 1 (<1) |
| Disease duration since diagnosis: Median [range], y | 4 [0‐36] | 7 [0‐61] | 7 [0‐36] |
| Calculated prognostic risk score | |||
| Low | 13 (6) | 49 (13) | 76 (34) |
| Intermediate‐1 | 47 (23) | 119 (31) | 126 (56) |
| Intermediate‐2 | 84 (41) | 57 (15) | NA |
| High | 63 (30) | 155 (41) | 24 (11) |
Abbreviations: ET, essential thrombocythemia; MF, myelofibrosis; NA, not applicable; PV, polycythemia vera.
Adapted from Mesa R, Miller CB, Thyne M, et al. Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: the MPN Landmark survey. BMC Cancer. 2016;16:167.6
Patient respondents were allowed to give multiple answers regarding race; this table shows only the first answer given by each patient respondent.
Prognostic risk scores were categorized as low, intermediate (1 or 2), or high and were determined using published scoring systems for MF (the Dynamic International Prognostic Scoring System: Passamonti F, Cervanes F, Vannuchi AM, et al. A dynamic prognostic model to predict survival in primary myelofibrosis: a study by the IWG‐MRT [International Working Group for Myeloproliferative Neoplasms Research and Treatment]. Blood. 2010;115:1703‐17089, PV (modified from Tefferi A, Rumi E, Finazzi G, et al. Survival and prognosis among 1545 patients with contemporary polycythemia vera: an international study. Leukemia. 2013;27:1874‐188110, and ET (International Prognostic Score for Essential Thrombocythemia: Passamonti F, Thiele J, Girodon F, et al. A prognostic model to predict survival in 867 World Health Organization‐defined essential thrombocythemia at diagnosis: a study by the International Working Group on Myelofibrosis Research and Treatment. Blood. 2012;120:1197‐120111.
Patient respondents with ET could receive prognostic risk scores of low, intermediate, or high; intermediate scores were not divided into intermediate‐1 and intermediate‐2.
Characteristics of Physician Respondents Who Treat Patients With Myeloproliferative Neoplasms
| No. of Respondents (%) | |||
|---|---|---|---|
| Characteristic | MF, n = 156 | PV, n = 250 | ET, n = 51 |
| Time since graduation from medical school: Mean ± SD, y | 21 ± 11 | 21 ± 12 | 20 ± 12 |
| Primary specialty | |||
| Hematology/oncology | 142 (91) | 221 (88) | 46 (90) |
| Oncology | 10 (6) | 18 (7) | 3 (6) |
| Hematology | 4 (3) | 11 (4) | 2 (4) |
| Practice setting | |||
| Single‐specialty group | 66 (42) | 101 (40) | 22 (43) |
| Academic hospital, outpatient clinic | 46 (29) | 75 (30) | 17 (33) |
| Community hospital, outpatient clinic | 18 (12) | 27 (11) | 3 (6) |
| Multispecialty group/HMO | 14 (9) | 26 (10) | 8 (16) |
| Solo practice | 8 (5) | 13 (5) | 1 (2) |
| Academic hospital, inpatient | 1 (1) | 3 (1) | 0 (0) |
| Other | 3 (2) | 5 (2) | 0 (0) |
| No. of patients with an MPN reportedly under the care of each physician at the time of survey: Mean ± SD | 11 ± 16 | 17 ± 16 | 20 ± 19 |
Abbreviations: ET, essential thrombocythemia; HMO, health maintenance organization; MF, myelofibrosis; MPN, myeloproliferative neoplasm; PV, polycythemia vera; SD, standard deviation.
Patient and Physician Respondent Perspectives on Communication About Myeloproliferative Neoplasm Symptoms
| No. of Respondents (%) | ||||||
|---|---|---|---|---|---|---|
| MF Respondents | PV Respondents | ET Respondents | ||||
| Variable | Patients, n = 207 | Physicians, n = 156 | Patients, n = 380 | Physicians, n = 250 | Patients, n = 226 | Physicians, n = 51 |
| Physician symptom assessment | ||||||
| Proactively asks how patient is feeling | 105 (51) | 55 (35) | 197 (52) | 86 (34) | 99 (44) | 12 (24) |
| Waits for patient to mention symptoms | 44 (21) | 8 (5) | 76 (20) | 22 (9) | 40 (18) | 6 (12) |
| Asks about patient's most important symptoms | 41 (20) | 86 (55) | 57 (15) | 127 (51) | 40 (18) | 28 (55) |
| Physician uninterested or does not ask about symptoms | 10 (5) | NA | 35 (9) | NA | 33 (15) | NA |
| Fills out a symptom list/review each symptom | 7 (3) | 6 (4) | 15 (4) | 15 (6) | 14 (6) | 4 (8) |
| Other | NA | 1 (1) | NA | 0 (0) | NA | 1 (2) |
| Physician communication of potential symptoms and disease progression | ||||||
| Only discusses current symptoms | 89 (43) | NA | 161 (42) | NA | 116 (51) | NA |
| Asks about a full and comprehensive list of symptoms | 73 (35) | 81 (52) | 127 (33) | 134 (54) | 51 (23) | 33 (65) |
| Outlines most likely symptoms | 19 (9) | 43 (28) | 27 (7) | 69 (28) | 18 (8) | 10 (20) |
| Outlines the most bothersome symptoms | 13 (6) | 30 (19) | 34 (9) | 43 (17) | 22 (10) | 8 (16) |
| Does not discuss symptoms | 0 (0) | NA | 5 (1) | NA | 4 (2) | NA |
| Other | 13 (6) | 2 (1) | 26 (7) | 4 (2) | 15 (7) | 0 (0) |
Abbreviations: ET essential thrombocythemia; MF, myelofibrosis; NA, not applicable; PV, polycythemia vera.
The question was worded to patient respondents as follows: “How does the doctor you see most often for your diagnosis assess any symptoms you may be experiencing?” The question was worded to physician respondents as follows: “During an average patient visit, how do you assess patients' symptoms?”
The question was worded to patient respondents as follows: “How did your doctor explain the potential symptoms you may experience and overall progression of the disease?” The question was worded to physician respondents as follows: “During an average patient visit, how do you discuss the symptoms that the patient might experience?”
Figure 1The proportions of patient respondents who did not recognize common symptoms as being related to their myeloproliferative neoplasm (MPN) are illustrated. Bars indicate the percentages and numbers of patient respondents who did not select each symptom in response to the question, “Which of these symptoms do you believe are the result of your MPN?” Data are from all respondents who reported experiencing each symptom (excluding those who had missing data). The 5 most frequently reported symptoms for each MPN are included. N indicates the number of patients who reported experiencing each symptom, and n indicates the number of patients who did not believe that the symptom was a result of their MPN (asterisk). Patients who had myelofibrosis (MF) and essential thrombocythemia (ET) had night sweats, and patients who had polycythemia vera (PV) had day or night sweats (dagger). Bruising was not included as an option on the MF survey (double dagger). NA indicates not applicable.
Figure 2Myeloproliferative neoplasm‐related symptoms at diagnosis are illustrated among (A) patient and (B) physician respondents. The question to patient respondents (asterisk) was, “Which of these symptoms were you experiencing at the time of diagnosis?” The analysis included the percentages of patient respondents who did not answer “none.” The question to physician respondents (dagger) was, “Out of 100%, what proportion of all newly diagnosed patients do you estimate have no symptoms?” The analysis included the median value provided by physician respondents for the proportion of newly diagnosed patients with symptoms. ET indicates essential thrombocythemia; MF, myelofibrosis; PV, polycythemia vera.
Figure 3Charts illustrate the most important myeloproliferative neoplasm treatment goals from patient‐physician respondent comparisons in (A) the myelofibrosis (MF), (B) polycythemia vera (PV), and (C) essential thrombocythemia (ET) settings. The question for patient and physician respondents was, “Other than a cure for diagnosis, what is your most important treatment goal for therapy?” QoL indicates quality of life.
Figure 4Patient respondent satisfaction with (A) physician management and (B) physician communication is illustrated. ET indicates essential thrombocythemia; MF, myelofibrosis; PV, polycythemia vera.