Leukemia Research 39 (2015) 859–865

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Accuracy of physician assessment of treatment preferences and health status in elderly patients with higher-risk myelodysplastic syndromes G. Caocci a,1 , M.T. Voso b , E. Angelucci c , R. Stauder d , F. Cottone e , G. Abel f , K. Nguyen g , U. Platzbecker h , O. Beyne-Rauzy i , G. Gaidano j , R. Invernizzi k , S. Molica l , M. Criscuolo b , M. Breccia m , M. Lübbert n , G. Sanpaolo o , F. Buccisano p , A. Ricco q , G.A. Palumbo r , P. Niscola s , H. Zhang t , S. Fenu u , G. La Nasa a , F. Mandelli f , F. Efficace f,∗,1 a

Hematology Unit, Department of Internal Medicine, University of Cagliari, Cagliari, Italy Department of Hematology, University of Rome “Cattolica S. Cuore”, Rome, Italy c Department of Hematology, “A. Businco” Hospital, Cagliari, Italy d Department of Internal Medicine V (Hematology and Oncology), Innsbruck Medical University, Innsbruck, Austria e Italian Group for Adult Hematologic Diseases (GIMEMA), Data Center and Health Outcomes Research Unit, Rome, Italy f Division of Population Sciences, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA, USA g Department of Leukemia, MD Anderson Cancer Center, Houston, TX, USA h Department of Medicine I, University hospital Dresden “Carl Gustav Carus”, Dresden, Germany i Department of Internal Medicine, CHU Toulouse Purpan, place du Dr Baylac, 31059 Toulouse Cedex, France j Department of Translational Medicine, Division of Hematology, Amedeo Avogadro University of Eastern Piedmont, Novara, Italy k Department of Internal Medicine, University of Pavia—IRCCS, Policlinico San Matteo Foundation, Pavia, Italy l Department of Oncology-Hematology, Pugliese-Ciaccio Hospital Center, Catanzaro, Italy m Department of Cellular Biotechnologies and Hematology, Sapienza University, Rome, Italy n University of Freiburg Medical Center, Freiburg, Germany o Department of Hematology and Stem Cell Transplantation Unit, IRCCS ‘Casa Sollievo della Sofferenza’ Hospital, San Giovanni Rotondo, Italy p Department of Hematology, “University of Tor Vergata”, Rome, Italy q Department of Emergency and Organ Transplantation, Hematology Section, University of Bari, Bari, Italy r UO Ematologia, AOU “Policlinico—V. Emanuele”, Catania, Italy s Department of Hematology, “S. Eugenio Hospital”, Rome, Italy t Department of Hematology, Affiliated Hospital of Liaoning University of Traditional Chinese Medicine, Shenyang, China u Department of Hematology, S. Giovanni-Addolorata Hospital, Rome, Italy b

a r t i c l e

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Article history: Received 21 January 2015 Received in revised form 27 April 2015 Accepted 5 May 2015 Available online 12 June 2015 Keywords: Health status Decision making Myelodysplastic syndromes Cancer Oncology Hematology

a b s t r a c t Higher-risk myelodysplastic syndromes (MDS) are rarely curable and have a poor prognosis. We investigated the accuracy of physicians’ perception of patients’ health status and the patients’ preferences for involvement in treatment decisions. We examined 280 newly diagnosed higher-risk elderly MDS patients paired with their physicians. Survey tools included the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) and the Control Preference Scale. Overall concordance was 49% for physician perception of patient preferences for involvement in treatment decisions. In 36.4% of comparisons there were minor differences and in 14.6% there were major differences. In 44.7% of the patients preferring a passive role, physicians perceived them as preferring an active or collaborative role. Absence of the patient’s request for prognostic information (P = 0.001) and judging the patient as having a poor health status (P = 0.036) were factors independently associated with the physicians’ attitude toward a lower degree of patient involvement in clinical decisions. Agreement on health status was found in 27.5% of cases. Physicians most frequently tended to overestimate health status of patients who reported low-level health status. The value of decision aid-tools in the challenging setting of higher-risk MDS should be investigated to further promote patient-centered care. © 2015 Elsevier Ltd. All rights reserved.

∗ Corresponding author at: Health Outcomes Research Unit, Italian Group for Adult Hematologic Diseases (GIMEMA), GIMEMA Data Center, Via Benevento, 6, 00161 Rome, Italy. Tel.: +39 06 441 639831; fax: +39 06 4402516. 1 G.C. and F.E. contributed equally to this study. http://dx.doi.org/10.1016/j.leukres.2015.05.012 0145-2126/© 2015 Elsevier Ltd. All rights reserved.

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1. Introduction Patients suffering from myelodysplastic syndromes (MDS) with an intermediate-2 or high risk according to the International Prognostic Scoring System (IPSS) (i.e., higher risk) have poor prognosis. For untreated patients median survival is only about 12 months [1,2]. Although the availability of innovative treatment regimens, hypomethylating agents and/or allogeneic hematopoietic stem cell transplantation (HSCT) have made it possible to modify the natural history of the disease and to extend survival, clinical decisionmaking remains a challenge. This is due to the advanced age of most patients at diagnosis, the presence of comorbidities that can potentially limit efficacy of treatment and compound treatment side effects negatively impacting the patient’s health related quality of life (HRQoL) [3–5]. In advanced-phase MDS with short life expectancy, it becomes essential to accurately evaluate the patients’ wishes and preferences in light of the risks, benefits and appropriateness of treatment [6]. Previous data in a sample of 43 patients with acute myeloid leukemia (AML) or advanced MDS has shown that gaps might exist in communication with physicians, as patients tended to overestimate chances of cure [7]. Adding to the challenge of the assessment process is the lack of uniformity in preferences of patients faced with life-threatening conditions. We have previously examined patient’s preferences for involvement in treatment decisions and found that decisionmaking preferences vary among newly diagnosed higher-risk MDS patients [8]. A personalized approach based on discussion and understanding patients’ needs and preferences could lead to more satisfying outcomes as opposed to the “one-size fits all” approach. Therefore, in the current analysis, we examined the physicians’ perception of their patients’ health status and preferences for involvement in treatment decisions. A better understanding of the physicians’ attitude toward patients’ involvement in clinical decisions at the time of initial consultation could provide important information on how to improve communication effectiveness. Some studies have shown that physicians often have a poor understanding of patients’ views and preferences when considering their desire to be involved in treatment decisions and to receive prognostic information, as well as their perception of health status and general needs [9]. Many factors can potentially impact physicians’ perception of patient preferences, such as differences in gender or education, number of encounters, patient age and performance status [10]. However, only a few studies have been conducted to address these issues in patients with hematological diseases [11,12]. The primary objective of this analysis was to investigate the accuracy of physicians’ perception of patients’ health status and the patients’ preferences for involvement in treatment decisions. A secondary objective was to investigate physicians’ attitude toward patient involvement in treatment decisions and to examine factors influencing physicians to be more patient inclusive or exclusive in the shared decision-making process.

Organization (WHO) classification [13] and with IPSS risk score of intermediate-2 or high risk, within 6 months before the date of registration were eligible. Patients with secondary MDS were not eligible. Data were centrally collected at Gruppo Italiano Malattie Ematologiche dell’Adulto (GIMEMA) Data Center. At the time of initial consultation, treating physicians were asked to complete a survey including a number of key socio-demographic characteristics and data regarding their clinical expertise. The following variables were ascertained: physician gender and age; the overall number of years in practice; the number of years of experience in treating MDS patients; primary field of clinical training (hematology vs. other fields). We also assessed variables specific to each patient encounter: how often the physician discussed the various treatment options with the patient; the patient’s explicit request for information about prognosis and expected survival; to what extent the physician considered it important to involve the patient in treatment decisions (not at all/a little bit/quite a bit/very much); the physician’s opinion on the patient’s role in the decision-making process and the physician’s perception of the patient’s health status. Methods and instruments used to assess these two aspects were the same for both physicians and patients and are described in the next paragraph. The study was approved by the Ethics Committee of each participating Center, and all patients provided written informed consent. 2.2. Patient assessment, health status and preference for involvement in treatment decisions Key patients sociodemographic and clinical characteristics were collected. In particular, as we expected to enrol basically elderly patients, we aimed at assessing living arrangements. Also, given the international setting of the study, we used a classification based on living arrangements determined by familial relationships of household members slightly adapted by the five mutually exclusive categories considered in the “Living arrangements of older persons around the world” report by the United Nations [14]. Patients and physicians were interviewed after having at least one encounter to discuss treatment options. Patients were asked to express their opinion on the preferences for involvement in treatment decisions and to evaluate global health status at baseline (i.e., before starting treatment for higherrisk MDS). The Control Preferences Scale (CPS), for the measurement of preferred involvement in healthcare decisions, was used to assess patients’ preferences [15,16]. The scale consists of five questions that can then be grouped into three broader categories, i.e., passive, collaborative and active role. For the purpose of this analysis, comparison was performed on the specific questions (these are summarized in Table 1). To assess health status, we used the global health status item of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 Items (EORTC QLQ-C30). This item is based on a Likert scale ranging from 1 (poor health status) to 7 (excellent health status) [17].

2. Patients and methods 2.3. Statistical analysis 2.1. Study design and physician assessment Higher risk MDS patients were consecutively enrolled into an international prospective cohort observational study whose primary objective was to investigate the prognostic value of baseline self-reported fatigue for overall survival. We herein report a secondary objective of this study that was registered on the US National Cancer Institute website (http://clinicaltrials.gov/); NCT00809575. Inclusion criteria have been previously reported [8]. Briefly, patients with MDS diagnosed according to the World Health

Descriptive statistics were used to characterize physicians’ main characteristics. Responses to the control preferences scale were rated from one (“I prefer to make the decision about which treatment I will receive.”) to five (“I prefer to leave all decisions regarding treatment to my doctor”). The responses to item 29 of the EORTC QLQ-C30 questionnaire (“How would you rate your overall health during the past week?”) ranged from one (“Very poor”) to seven (“Excellent”). Based on previous work [18] and for descriptive purposes, we defined complete agreement as an exact match between

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Table 1 Control preferences scale used to assess patients and physicians perspectives. Patient rating

Response

Physician rating

I prefer to make the final choice about which treatment I will receive

A

I prefer to make the final choice about which treatment I will receive after seriously considering my doctor’s opinion I prefer that my doctor and I share responsibility for deciding which treatment is best for me I prefer that my doctor makes the final decision about treatment, but seriously considers my opinion I prefer to leave all decisions regarding treatment to my doctor

B

I think this patient prefers to make the final decision about treatment himself/herself I think this patient prefers to make the final decision about treatment himself/herself, but after seriously considering my opinion I think this patient prefers to share responsibility for deciding which is the best treatment I think this patient prefers that I make the final decision about treatment after seriously considering his/her opinion. I think this patient prefers to leave all decisions regarding treatment to me.

C D E

Responses A and B suggest preference for an active role, C for a collaborative/shared role, D and E for a passive role.

patient and physician response, minor disagreement as a difference of ± 1 and major disagreement as a difference of at least ± 2. For both the CPS and the overall health status scale, the proportions were computed for each permissible patient–physician combination of responses. These proportions were used to assess the overall patterns of physician–patient agreement/disagreement on patients’ preferences for clinical decision-making and global health status. Simple and weighted -coefficient was used to assess the degree of physician–patient agreement. Physician–patient agreement was considered as poor for -coefficient values below 0.40, fair to good from 0.4 to 0.75 and excellent if higher than 0.75 [19]. For descriptive purposes, patients were classified according to their responses to the control preferences scale as “Active” (“I prefer to make the final decision about my treatment after seriously considering my doctor’s opinion” and “I prefer to make the decision about which treatment I will receive”), “Collaborative” (“I prefer that my doctor and I share responsibility for deciding which treatment is best for me.”) and “Passive” (“I prefer to leave all decisions regarding treatment to my doctor” and “I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my opinion”). Univariate and multivariate analyses were performed to investigate possible predictors of the probability that physicians considered it less important to involve patients in making treatment decisions. Potential predictors were both physician and patient-related characteristics. A multilevel approach was chosen to account for the clustered nature of data, given that each physician could evaluate more than one patient. Thus, a multilevel logistic regression model was applied, where the dependent variable was the response “not at all” or “a little bit” to the question “To what extent do you think it is important to involve this patient in making treatment-decisions?”. The final multivariate model included all variables that resulted to be statistically significant in univariate analysis. Statistical significance was set at ˛ = 0.05. All analyses were performed with SAS v.9.2 (SAS Institute, Inc., Cary, NC, USA).

3. Results A total of 280 MDS patients (mean age of 70 years) paired with 68 physicians were involved in the study. Patients characteristics have been described elsewhere [20]. Briefly, 74% of patients were diagnosed with IPSS intermediate-2 and 26% with high-risk IPSS and 48% had at least one comorbidity. Mean time from diagnosis of higher-risk MDS to patient assessment was 2.6 weeks. In line with previous reports on elderly people [14], there were gender differences in living arrangements. There were statistically significant more women (18%) then men (11%) living alone and less women (54%) then men (77%) living with a spouse or partner (P < 0.001). The median age of the physicians was 44 years (range 28–64) and 53% were women. The majority of physicians were hematologists (94%) and their median duration of medical practice was 16 years, with a median of 11 years of experience in treating MDS patients. Physicians characteristics are summarized in Table 2.

3.1. Physician perceptions versus patient preferences for involvement in treatment decisions Overall concordance was 49% (137/280 patient–physician pairs) for physician perception of patient preference for involvement in treatment decisions. In 36.4% of comparisons there were minor differences and in 14.6% there were major differences (Fig. 1). -Coefficient and weighted -coefficient were 0.284 (95% CIs: 0.204; 0.364, P < 0.001) and 0.327 (95% CIs: 0.242; 0.412, P < 0.001), respectively, indicating poor concordance between patients and physicians. Physicians were most accurate in identifying patients who preferred a collaborative role, perceiving this preference in 65 of the 110 patients (59.1%) who reported it. In 44.7% (59/132 patients) of patients preferring a passive role, physicians perceived them as preferring an active or collaborative role.

Table 2 Characteristics of physicians. Physician-related variable

Category

Total (n = 68)

Gender, n (%)

Male Female

32 (47.06) 36 (52.94)

Main clinical training, n (%)

Hematology Other (including medical oncology)

64 (94.12) 4 (5.88)

Physician age (years)

Mean (SD) Median Range

44.82 (5.84) 44.00 28.00–64.00

Overall years of practice

Mean (SD) Median Range

18.10 (5.48) 16.00 2.00–38.00

Years of experience in treating MDS patients

Mean (SD) Median Range

13.39 (5.18) 11.00 1.00–34.00

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G. Caocci et al. / Leukemia Research 39 (2015) 859–865

Fig. 1. Agreement/disagreement patterns of physician’s perception of patient’s preference for involvement in treatment decisions. Amount and proportions (%) of each permissible patient–physician rating combination according to the control preferences scale, categorized in three broad groups (see Table 1). A minor disagreement was defined as the discrepancy between adjacent items, a major disagreement as the discrepancy between non-adjacent items on the 5-item Likert scale.

3.2. Health status: Patients’ versus physicians’ ratings The degree of agreement between physicians and patients in evaluating overall health status was low with -coefficient of 0.099 (95% CIs: 0.034; 0.164, P < 0.001) and weighted -coefficient of 0.270 (95% CIs: 0.194; 0.346, P < 0.001). Fig. 2 shows the proportions of discrepancies for level of health status between the physicians’ and patients’ perceptions. Overall, concordance was found in 27.5% of cases. In 42.1% of comparisons there was minor disagreement and in the remaining 30.4% of comparisons there was major disagreement. Physicians most frequently tended to overestimate the health status of patients reporting low-level health status. For example, the health status of patients with self-reported ratings between 1 and 4 (n = 169), was overestimated by physicians in 58% of comparisons and underestimated in 14.2%. No physicians related factors (such as age, gender and years in practice) were found to be associated with patient health status overestimation (data not shown). 3.3. Physicians’ attitude toward patients’ involvement in treatment decisions When physicians were asked to what extent it was important to involve the patient in making treatment decisions, the following responses were obtained in the 280 evaluations: not at all (n = 3; 1%), a little (n = 54; 19%), quite a bit (n = 81; 29%) and very much (n = 142; 51%). For descriptive purposes, Table 3 reports physicians’ evaluation of the importance of patient involvement in treatment decisions according to physicians’ characteristics.

In univariate analysis, factors associated with the probability that physicians considered it less important to involve their patients in treatment decisions were: patients’ lower level of education (i.e., compulsory school versus high school/university degree; OR = 2.739, 95% CI, 1.130 to 6.641, P = 0.026), poorer performance status (OR = 4.77, 95% CI,1.621 to 14.04, P = 0.005), absence of patient’s request for prognostic information (OR = 0.091, 95% CI, 0.024 to 0.344, P < 0.001) and judging the patient as having a poor health status (OR = 0.596, 95% CI, 0.422 to 0.841, P = 0.003). Physician characteristics such as age or years of experience were not found to be associated with physicians’ attitude toward patients’ involvement (Table 4). The final multivariate model showed that the only factors independently associated with the physicians’ attitude toward less involvement of their patients in clinical decisions were absence of the patient’s request for prognostic information (P = 0.001) and judging the patient as having a poor health status (P = 0.036) (Table 4). The influence of possible country-related cultural differences was also explored, including the variable country in univariate analysis (Italy, being the country enrolling the most vs. other countries). However, this was not statistically significant (P = 0.903). 4. Discussion We found that at the beginning of treatment physicians’ perceptions of patients’ preferences for involvement in treatment decisions were frequently inconsistent with their patients’ stated preferences. In approximately 50% of cases, physicians did not

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Fig. 2. Agreement/disagreement patterns of physician’s perception of patient’s self-rated health status. Proportions of discrepancies between the physicians’ and patients’ perceptions of overall health status, measured by item 29 of the EORTC-QLQ-C30 questionnaire. Overestimation means that physicians’ ratings of patient overall health status were higher than those of the patients themselves, while underestimation means that physicians’ ratings for patient overall health status were worse that those reported by the patients themselves. Major = a physician–patient score difference of at least ± 2, minor = difference of ± 1. Empty cells denote a proportion of less than 3%. All proportions were computed out of 280 evaluations.

Table 3 Physicians’ evaluation of the importance of patient involvement in treatment decisions according to physicians’ characteristics. Analysis based on 280 evaluations. Physician-related variables

Not at all/A little (n = 57)

Quite a bit (n = 81)

Very much (n = 142)

Gender n (%) Female Male

17 (29.82) 40 (70.18)

52 (64.20) 29 (35.80)

74 (52.11) 68 (47.89)

Physician age (years) Mean (SD) Median Range

43.25 (6.13) 43 29.00–64.00

43.96 (8.05) 43 28.00–64.00

43.61 (6.47) 42 28.00–62.00

Overall years of practice Mean (SD) Median Range

17.30 (6.00) 18 4.00–38.00

17.25 (8.16) 15 2.00–34.00

17.95 (6.26) 16 4.00–35.00

Years of experience in treating MDS patients Mean (SD) Median Range

12.81 (5.66) 13 3.00–32.00

12.88 (7.11) 13 1.00–34.00

13.72 (5.09) 15 2.00–27.00

Table 4 Multilevel analysis of factors predicting the probability that physicians consider it less important to involve patients in treatment decisions. Univariate analysis

Physician-related variables Gender (ref. male) Age Years in practice Years of experience in treating MDS patients Patient-related variables Age Gender (ref. male) Low education levela Living alone Previous MDS ECOG ≥ 2 Transfusion dependentb MDS specific comorbidity index Physician rating of the patient’s overall health statusc Number of encounters with the physician to discuss treatment options Patient explicitly requested information about prognosis and expected survival Final multivariate model ECOG ≥ 2 Low education levela Patient explicitly requested information about prognosis and expected survival Physician rating of the patient’s overall health statusc a b c

Odds ratio (OR)

95% confidence interval (CI)

0.556 1.013 0.989 1.009

(0.138; 2.231) (0.931; 1.103) (0.906; 1.080) (0.916; 1.111)

0.401 0.760 0.808 0.860

1.039 1.800 2.739 2.940 1.582 4.771 1.481 0.632 0.596 0.645 0.091

(0.996; 1.084) (0.777; 4.168) (1.130; 6.641) (0.887; 9.740) (0.623; 4.016) (1.621; 14.040) (0.532; 4.123) (0.363; 1.102) (0.422; 0.841) (0.390; 1.066) (0.024; 0.344)

0.076 0.170 0.026 0.077 0.333 0.005 0.450 0.104 0.003 0.087

Accuracy of physician assessment of treatment preferences and health status in elderly patients with higher-risk myelodysplastic syndromes.

Higher-risk myelodysplastic syndromes (MDS) are rarely curable and have a poor prognosis. We investigated the accuracy of physicians' perception of pa...
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