Development of a clinical prediction tool for cancer-associated venous thromboembolism (CAT): the MD Anderson Cancer Center CAT model.

INTRODUCTION: Cancer-associated venous thromboembolism (CAT) is a major complication of malignancy. Our goal was to develop a prediction model for VTE that better represented to the population seen at large referral cancer centers. MATERIALS AND METHODS: This study was nested in a prospective cohort study at the University of Texas MD Anderson Cancer Center that evaluated adult patients during outpatient cancer-staging computed tomography to estimate the prevalence of incidental VTE. Data from patients in whom incidental VTE was not found on initial CT were collected until 24 months ± 7 days from the study inclusion date to determine the occurrence of new VTE events. Demographics, clinical data, current cancer treatment information, and the use of erythropoietin stimulating agents (ESAs) along with hematologic variables were collected in all patients and analyzed to determine differences between those who developed VTE versus those who did not. All candidate variables with significance p value (≤ 0.1) under univariate analysis were considered to enter the final multivariate model. RESULTS: Data of 548 patients were analyzed. The presence of metastatic disease and the use of platinum-based chemotherapy were strongly associated with CAT occurrence. The use of ESAs and specific malignancies showed trends of association with CAT, while associations were not statistically significant.Those characteristics were utilized to develop a clinical prediction model for CAT readily available and effective (c-index = 0.74). CONCLUSION: Our model is effective and easy to incorporate in busy clinical settings and it does not depend on esoteric or difficult-to-obtain laboratory testing. Future external validation studies may provide further evidence for the applicability of our results.

Fatigue, symptom burden, and health-related quality of life in patients with myelodysplastic syndrome, aplastic anemia, and paroxysmal nocturnal hemoglobinuria.

BACKGROUND: Fatigue is distressing and affects quality of life (QoL) among patients with myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH). Limited data exist on the impact of fatigue, QoL, and related symptoms in these patients. OBJECTIVE: Prospectively assess fatigue (functional assessment of cancer therapy-anemia [FACT-An]); QoL (FACT-An subscales); pain (brief pain inventory); and depression, anxiety, and stress (depression anxiety stress scale-21) and strategies used to manage these symptoms in patients with MDS, AA, and PNH. METHODS: Surveys were administered via the AA and MDS International Foundation website and database from October 2014 through April 2015 in a cross-sectional study. Results were summarized using descriptive statistics. RESULTS: Of 303 patients, 145 (48%) had MDS, 84 (28%) had AA, and 74 (24%) had PNH; 31 (10%) had >1 diagnosis. The mean age was 57 years, 200 (66%) were female, and 195 (92%) were white. The mean fatigue scores were 25 (range 1-52) for the whole cohort, 28 for AA, 25 for MDS, and 24 for PNH (P = 0.117); these are all considered severe level. The mean QoL score was 68 (range 10-104) for the whole cohort, 67 for AA, 69 for MDS, and 67 for PNH (P = 0.821). The ranges for stress were normal; pain and depression, mild; and anxiety, moderate. The most common management strategies perceived as helpful for fatigue in the past month were preserving energy, physical activity, and naps. CONCLUSIONS: Many patients with MDS, AA, and PNH report severe fatigue. The helpfulness of fatigue management strategies may impact patients' continued use; whether these strategies are beneficial and decrease fatigue levels needs more study.

Prospective cohort study of cancer patients diagnosed with incidental venous thromboembolism on routine computed tomography scans.

PURPOSE: Venous thromboembolism (VTE) is a major complication of cancer with recent increasing reports of incidental VTE. The objectives are to estimate the prevalence of incidental VTE in cancer patients on staging CT scans, identify common symptoms, and determine VTE recurrence in a prospective study. PATIENTS AND METHODS: One thousand ninety patients were studied. Adult cancer patients scheduled for outpatient staging CT scans were eligible. VTE cases were followed for 6 months. Fisher's exact test for group comparisons of categorical variables and generalized linear modeling to estimate the prevalence of incidental VTE was used. RESULTS: The mean age was 58 years (range 18-87 years); 50% were male. The prevalence of incidental VTE was 1.8% (CI 1.15-2.87%). Significant symptoms in patients with VTE included fatigue (p = 0.004), stress (p = 0.0195), depression (p = 0.019), poorer quality of life (p = 0.0194), and poorer physical well-being (p = 0.0007). All the patients with VTE had at least one comorbidity (p = 0.03). No patient had recurrence within 6 months. CONCLUSION: The prevalence of incidental VTE on staging CT scans is lower than previously reported. Symptoms were associated with VTE; however, further work is needed to understand whether these are clinically relevant. No VTE recurrences were noted following 6 months.

Affective tone in medical encounters and its relationship with treatment adherence in a multiethnic cohort of patients with rheumatoid arthritis.

BACKGROUND: Tone of voice in communication between patients and rheumatologists may offer insight into problems of treatment adherence in patients with rheumatoid arthritis. OBJECTIVE: The aim of this study was to evaluate physician-patient affective vocal tone within the medical encounter and its relationship to treatment adherence in ethnically diverse patients with rheumatoid arthritis. METHODS: The consultations of 174 patients with rheumatoid arthritis were audio recorded at a baseline visit. Of these, 135 completed follow-up adherence measures at 3 months. The positive and negative affective tones of patients, physicians, and interpreters (and distressed tones of patients and interpreters) were assessed using the Roter Interaction Analysis System affective communication scale. Treatment adherence was evaluated at baseline and at 3 months using the Compliance Questionnaire Rheumatology. RESULTS: A total of 117 baseline consultations were in English (n = 42, 36, and 39 white, African American, and Hispanic patients, respectively), 24 in Spanish, and 33 with an interpreter (total = 174). Patients reporting poorer adherence were rated as having more distressed affect and less positive affect than patients reporting greater adherence. Physicians expressed more positive affect to more educated patients. Physicians and patients reciprocated one another's positive and negative affect. Controlling for baseline adherence, physician negative affect predicted greater adherence at 3 months for Hispanic patients, regardless of language choice, compared with white patients. CONCLUSIONS: Patients' affective tones offer clues to problems patients may have with treatment adherence and well-being. More research is needed regarding why physicians' expression of negative affect may facilitate adherence for some groups of patients.

Electronic monitoring of oral therapies in ethnically diverse and economically disadvantaged patients with rheumatoid arthritis: consequences of low adherence.

OBJECTIVE: To quantify adherence to oral therapies in ethnically diverse and economically disadvantaged patients with rheumatoid arthritis (RA), using electronic medication monitoring, and to evaluate the clinical consequences of low adherence. METHODS: A total of 107 patients with RA enrolled in a 2-year prospective cohort study agreed to have their oral RA drug therapy intake electronically monitored using the Medication Event Monitoring System. Adherence to disease-modifying antirheumatic drugs (DMARDs) and prednisone was determined as the percentage of days (or weeks for methotrexate) on which the patient took the correct dose as prescribed by the physician. Patient outcomes were assessed, including function measured by the modified Health Assessment Questionnaire, disease activity measured by the Disease Activity Score in 28 joints (DAS28), health-related quality of life, and radiographic damage measured using the modified Sharp/van der Heijde scoring method. RESULTS: Adherence to the treatment regimen as determined by the percentage of correct doses was 64% for DMARDs and 70% for prednisone. Patients who had better mental health were statistically more likely to be adherent. Only 23 of the patients (21%) had an average adherence to DMARDs ≥80%. These patients showed significantly better mean DAS28 values across 2 years of followup than those who were less adherent (3.28 versus 4.09; P = 0.02). Radiographic scores were also worse in nonadherent patients at baseline and at 12 months. CONCLUSION: Only one-fifth of RA patients had an overall adherence to DMARDs of at least 80%. Less than two-thirds of the prescribed DMARD doses were correctly taken. Adherent patients had lower disease activity across the 2 years of followup.

A qualitative analysis of decision-making for total knee replacement in patients with osteoarthritis.

OBJECTIVE: Variation in the utilization of total knee arthroplasty (TKA) for patients with osteoarthritis has been well documented. Conceivably, patient preferences may play a major role in these differences; however, this has not been adequately assessed. The purpose of this study was to conduct a qualitative analysis of decision-making factors influencing preferences for TKA in patients with knee osteoarthritis. METHODS: We conducted 6 focus groups of patients with knee osteoarthritis from diverse ethnic backgrounds attending primary care clinics affiliated to the largest private outpatient institution in Houston, TX. All groups were lead by race-concordant facilitators. The group discussions were centered on factors considered to be important in the decision-making for TKA. Thematic analysis was conducted, using a grounded theory approach aided by qualitative software. RESULTS: Several themes emerged from the groups' discussions. Positive and negative personal experiences played a major role in decision-making. Generally, participants had good expectations about improved function and quality of life, but a number of fears were identified, the most prevalent being fear of a lengthy recovery, followed by fear of complications and of anesthesia. Additional emerging themes included trust in surgeon, financial concerns, and worries about general health. CONCLUSIONS: The attitudes and beliefs of patients with knee osteoarthritis about TKA are largely based on personal experiences, expectations, and fears, and they are largely influenced by their close social environment. These findings emphasize the need for open doctor-patient communication around individual experiences to achieve satisfactory shared decision-making for TKA.

(Mis)understanding in patient-health care provider communication about total knee replacement.

OBJECTIVE: To examine whether communication factors affect health care provider and patient agreement on the need for, risks of, and benefits of joint replacement, and also whether degree of agreement predicts patient satisfaction and intent to follow treatment recommendations. METHODS: Health care providers (n = 27) and patients (n = 74) with severe osteoarthritis (OA) were recruited from clinics in Houston, Texas. Patients completed a baseline survey prior to the consultation. After the visit, patients and providers completed measures of the severity of the patient's OA, the expected benefits of total knee replacement (TKR), and concern about surgical complications. Patients also completed satisfaction and intent to adhere measures. Provider communication and patient participation were measured by patient self-report and by observers' codings of audiorecordings of the consultations. RESULTS: Provider-patient agreement was modest to poor regarding severity of the patient's OA and the expected benefits and risks of TKR. Providers and patients were more aligned on the patient's OA severity when providers used more partnership building but spent less time simply giving information. Differences between providers' and patients' concerns about surgery were greater when patients were less participatory, African American, or expressed lower trust in their doctors. Patient satisfaction and intent to adhere were predicted by provider-patient agreement on the benefits of TKR. CONCLUSION: Patients and providers often differ in their beliefs about the need for, risks of, and benefits of TKR, and these differences can affect patient satisfaction and commitment to treatment. Facilitating active patient participation might contribute to greater physician-patient agreement on the patient's concerns about OA and surgical interventions.

Treatment adherence in patients with rheumatoid arthritis and systemic lupus erythematosus.

This study assessed self-reported adherence in patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) from underserved healthcare settings. We conducted a cross-sectional survey of 102 ethnically diverse patients--70 with RA and 32 with SLE--attending rheumatology clinics at publicly funded hospitals in Houston, Texas; 43% were Hispanic, 32% African-American, and 25% White. Treatment adherence was evaluated using the compliance questionnaire rheumatology (CQR; 0, low adherence and 100, high adherence) and the questionnaire of the Adult AIDS Clinical Trials Group (AACTG). The patients were also asked how often they forgot to take their prescribed medications or discontinued them on their own. Mean patient age was 48.5 years; 75% were female, 32% were African-American, 43% Hispanic, and 25% White. Only one third reported never forgetting to take their medications; 40% reported having stopped their medications on their own because of side effects, and 20% because of lack of efficacy. Mean CQR score was 69.1 +/- 10.5, suggesting moderate adherence overall. Differences were also observed across ethnic groups: 23% of ethnic minority patients had problems taking their medications at specified times compared to 11% of Whites (p = 0.03). Lower education and side effects were associated with lower adherence. No differences were observed between RA and SLE patients. Many patients with RA and SLE report problems with treatment adherence. These appear to be more prevalent in African Americans and Hispanics than Whites; the impact of decreased adherence on outcomes could be significant and should be considered when treating patients with RA and SLE.

"Keep on truckin'" or "It's got you in this little vacuum": race-based perceptions in decision-making for total knee arthroplasty.

OBJECTIVE: Ethnic variation in the utilization of total knee arthroplasty (TKA) has been well documented, with African Americans showing significantly lower utilization rates. These differences are not explained by the prevalence or severity of knee osteoarthritis (OA). Patient preferences may contribute to differences in utilization since TKA is an elective surgery. We conducted a qualitative analysis of decision-making factors influencing ethnic preferences for TKA in patients with knee OA. METHODS: Six focus group discussions were conducted with participants being divided according to race: 2 African American groups, 2 Hispanic groups, and 2 Caucasian groups. Participants were all patients with knee OA attending the same treatment facility. A total of 37 patients participated, 14 male and 23 female. Group discussions were led by a race-concordant facilitator. A grounded theory approach was used to analyze verbatim transcripts of the discussions. RESULTS: Thirty distinct categories of information emerged in the analysis of the data. Four of these categories showed variation among ethnic groups and included explanations of illness, changes in lifestyle, trust and skepticism, and paying for surgery. CONCLUSION: Patient attitudes and beliefs about TKA vary among ethnic groups. Differences in explanations of illness, changes in lifestyle, trust and skepticism, and paying for surgery are topics for discussion in the medical encounter. There is a need for open doctor-patient communication around individual experiences and beliefs in an effort to enhance decision-making for TKA.

Racial/ethnic differences in preferences for total knee replacement surgery.

OBJECTIVES: To determine whether there are ethnic differences in preferences for surgery vs. medical treatment of knee osteoarthritis (OA). STUDY DESIGN AND SETTING: Cross-sectional in-person interviews using conjoint analysis methodology, a technique often used in marketing, involved individuals making choices between alternative hypothetical scenarios for medical or surgical treatment of knee OA. One hundred ninety-three individuals over the age of 20 were recruited through random digit dialing in Harris County, TX, and 198 individuals with knee OA were recruited from a large outpatient health care provider in Houston, TX. RESULTS: African Americans were significantly less likely to chose surgery than whites (odds ratio 0.63 [0.42, 0.93]). Women and older individuals were also less likely to choose surgery (0.69 [0.51, 0.94], 0.98 [0.97, 0.99]). Larger reductions in negative symptoms with surgery significantly increased the likelihood of choosing surgery. There was no difference between the public and patients, and no effect of income level. CONCLUSIONS: Disparities in knee replacement rates among ethnic groups may be partly due to differences in preferences for surgery. Conjoint analysis was shown to be a feasible methodology for collecting preferences in health research. This methodology has great promise in contributing to our knowledge of drivers of health care decision making in individuals.

Trust in physicians and elements of the medical interaction in patients with rheumatoid arthritis and systemic lupus erythematosus.

OBJECTIVE: To identify components of the patient-doctor relationship associated with trust in physicians. METHODS: We assessed 102 patients with systemic lupus erythematosus (SLE) or rheumatoid arthritis (RA) seen at publicly funded hospitals in Houston, Texas. Patients completed a self-response survey examining patient perceptions of the medical encounter and trust in their physicians. Evaluated components of physicians' behaviors included: informativeness, sensitivity to concerns, reassurance and support, patient-centeredness, and participatory decision-making style. Scales were scored 0 to 10, with higher numbers indicating more positive perceptions of communication. RESULTS: Seventy patients had RA and 32 SLE; 25% were white, 43% Latino, 31% African American, and 75% were female. Mean scores for the medical interaction and trust scales ranged from 6.2-7.1, indicating moderate degrees of positive perceptions. All components were highly and positively correlated with each other, and with trust, suggesting that these traits are all elements of a positive style of doctor-patient communication. In multivariate analysis, ethnicity, physicians' informativeness, physicians' sensitivity to concerns, patient-centeredness, disease activity, and patient trust in the US health care system were independent predictors of trust in physicians. A separate model examined the predictors of patient disclosure of information. Patient perceptions of physicians' patient-centeredness and severity of disease activity were independently predictive of patient disclosure of information. CONCLUSION: In patients with SLE and RA, trust in physicians is significantly associated with patients' ethnicity and their perceptions about specific components of physicians' communication style. Trust in physicians can be improved by using a patient-centered approach, being sensitive to patient concerns, and providing adequate clinical information. Furthermore, patients appear to be more willing to disclose concerns when physicians use a patient-centered communication style.

Valuation of arthritis health states across ethnic groups and between patients and community members.

OBJECTIVE: We sought to examine differences in valuation of health by individuals from different ethnic backgrounds and between patients and community members. RESEARCH DESIGN: We surveyed 193 community members identified by random-digit dialing (ie, 64 white, 65 black, and 64 Hispanic) and 198 patients with osteoarthritis (OA), 66 per ethnic group, drawn sequentially from clinic lists of an outpatient institution. MEASURES: Participants were interviewed and asked to rate 2 scenarios describing arthritis (mild and severe) using visual analog scale (VAS), standard gamble (SG), and time trade-off (TTO). Differences were adjusted for cohort, age, gender, and education. RESULTS: Members of the public had higher preference scores for the 2 health states than patients (SG severe state: 0.77 public, 0.66 patients; SG mild state: 0.90 public, 0.84 patients). The difference score between the mild and severe states was smaller for black than white subjects (P < 0.001) by SG and TTO. Scores for Hispanics and whites did not differ. Preference scores increased with age (SG, TTO). CONCLUSIONS: Significant differences were observed in the valuation of health between members of the public and patients, among ethnic groups, and in relation to educational status and age, with the difference between utilities of health states being a more efficient measure of preference than the utility of a single state. Utilities elicited through valuation of hypothetical health scenarios are dependent on sociodemographic traits, experience of disease, and method used. These findings suggest that utilities cannot be used interchangeably across populations, with implications for economic analyses.

Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease.

OBJECTIVE: To explore the determinants of adherence to medical recommendations, including drug therapy and appointment-keeping, among ethnically diverse and economically disadvantaged patients with rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). METHODS: Patients with RA and SLE were identified through chart review and were invited to participate in focus groups to examine their attitudes and beliefs regarding adherence to treatment and medical appointments. Eight focus groups (4 RA, 4 SLE) were conducted, with a total of 40 participants (22 SLE patients and 18 RA patients). Transcripts were analyzed using grounded theory techniques and qualitative analysis software to facilitate coding interpretation. RESULTS: The majority of participants reported experiencing difficulty in adhering to their treatment at least occasionally. Both SLE and RA patients reported similar barriers to treatment adherence: fear of side effects, financial problems, difficulty in navigating the public health system, and perceived treatment inefficacy. RA and SLE patients also revealed barriers to appointment keeping, including difficulties in scheduling, financial costs, transportation, and functional impairment limiting their ability to attend the clinic. CONCLUSION: Patients' perceptions of and experiences with the health system, physicians, medication effectiveness, and side effects influence their adherence to treatment and other medical recommendations. Strategies to improve adherence could include the following: attempting to modify patients' beliefs and perceptions regarding medication effectiveness, promoting realistic expectations about risk/benefit ratios, and improving access to health care by reducing barriers that limit the interaction between patients and the health system.

Ethnic variation in knee replacement: patient preferences or uninformed disparity?

BACKGROUND: Despite the efficacy and cost-effectiveness of total knee replacement (TKR), minority patients with knee osteoarthritis (OA) are half as likely as their white counterparts to undergo this procedure. Patient preferences may play a large role in the variations in utilization of TKR. We evaluated the preferences and beliefs of patients with knee OA from diverse ethnic backgrounds in relation to TKR. METHODS: The 198 patients with knee OA surveyed were of different ethnicities. Patients were asked about physician recommendations of TKR and whether they had considered having the procedure, their perceptions about the benefits and risks of TKR, their expectations if they were to undergo the procedure, and their trust in physicians and the health system. Bivariate and multivariate analyses were performed. RESULTS: A physician had discussed TKR with 27% of African Americans, 15% of whites, and 11% of Hispanics (P = .04). White patients were more likely than minority patients to have considered undergoing TKR (P = .04), more likely to consider TKR if their OA worsened and the procedure were recommended by their physician (P = .002), and more likely to consider TKR as a beneficial procedure (P = .02). Ethnic differences in preferences remained after controlling for severity of OA. CONCLUSIONS: Ethnic minority patients with knee OA are less likely to consider TKR. In our study, these differences were not related to physician recommendation biases. The ethnic variation in preferences was associated with differences in perception of benefit, lack of personal experiences with TKR, and trust.