Persistently Frequent Emergency Department Utilization Among Persons With Systemic Lupus Erythematosus

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/152017/1/acr23777.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/152017/2/acr23777_am.pd

Key Indexing Terms: RISK COMMUNICATION NUMERACY DRUG TOXICITY RHEUMATOID ARTHRITIS Personal, non-commercial use only

Effectively communicating the risk and benefits of available treatment alternatives is an essential component of medical care. This is particularly true regarding the treatment of rheumatoid arthritis (RA), where there are now multiple treatment options available, each with distinct risk profiles. Effective communication of risk is difficult, however, in part because of limitations associated with both the provision and interpretation of probabilistic information 1-8 . At the most basic level, there is little agreement on how to present risk information in clinical practice, with some investigators arguing for the use of verbal phrases such as "rare" or "frequent" and others advocating the use of quantitative estimates (e.g., proportions or percentages). Use of words is limited by the wide range of values that patients and physicians assign to verbal expressions of probability 12 . People with protected values believe that certain objects should be protected from any and all trade-offs with other values no matter how small the risk. For example, people with protected values for forest conservation believe that forests should be protected from loggers no matter how small the threat to the forest. Studies have shown that protected values often result from incorrect assumptions and may therefore lead to poor decision-making. To test our hypothesis, we examined whether using several strategies to facilitate risk-communication, patients alter their willingness to take medications as the risk of toxicity is substantially decreased, and whether increased willingness to accept the risk of toxicity varies depending on the specific AE. MATERIALS AND METHODS Patients. Consecutive patients with RA belonging to a community rheumatology practice serving New Haven, Connnecticut, and surrounding areas were asked to participate in a study examining the importance patients attach Risk Communication in Rheumatoid Arthritis LIANA FRAENKEL, SIDNEY BOGARDUS, JOHN CONCATO, and DAVID FELSON ABSTRACT. Objective. Some people believe that certain issues should be protected from all trade-offs. These issues are referred to as "protected values." We investigated whether some patients with rheumatoid arthritis (RA) treat the risk of adverse effects (AE) as "protected values," i.e., as unacceptable regardless of how small the risk. Methods. Patients with RA rated willingness to risk 17 different AE on a visual analog scale, where 0 = not willing under any circumstances and 100 = definitely willing. Participants then rated willingness to take medication as the risk of each AE was progressively decreased by 2 levels from its actual risk, using a 5 level scale ranging from 10 in 100 to 1 in 100,000. Results. Between 32% and 39% of participants were not more willing to accept a risk of AE causing reversible cosmetic changes (e.g., acne), between 35% and 47% were not more willing to accept a risk of AE causing reversible discomfort (e.g., rash), and between 41% and 45% were not more willing to accept a risk of AE causing potential irreversible damage (e.g., pneumonitis) as the probability of each of these AE was substantially decreased. Unwillingness to accept risk of toxicity was especially evident for cancer, where 66% of patients refused to accept a risk of cancer occurring in 1 in 100,000 persons. Conclusion. Among patients particularly concerned with the risk of drug toxicity, many remain unwilling to accept the risk of AE even when their probability is decreased to levels far below their actual risk. These results suggest that patients may treat particularly worrisome AE as protected values, which may lead to poor decision-making in clinical practice

Initial Development of a Patient-Reported Instrument Assessing Harm, Efficacy, and Misuse of Long-Term Opioid Therapy

Guidelines on long-term opioid therapy recommend frequent reassessment of harm, efficacy, and misuse of these potentially harmful and sometimes ineffective medications. In primary care, there is a need for a brief, patient-reported instrument. This report details the initial steps in the development of such an instrument. An interdisciplinary team of clinician-scientists performed four discrete steps in this study: (1) conceptualization of the purpose and function of the instrument, (2) assembly of an item pool, (3) expert rating on which items were most important to include in the instrument, and (4) modification of expert-selected items based on a reading level check and cognitive interviews with patients. A diverse panel of 47 subject matter experts was presented with 69 items to rate on a 1–9 scale in terms of importance for inclusion in the instrument. The panel highly rated 37 items: 8 related to harm, 4 related to efficacy, and 25 related to misuse. These 37 items were then tested for patient comprehension and modified as needed. Next steps in development will include further item reduction, testing against a gold standard, and assessment of the instrument’s effect on clinical outcomes

Individualized decision aid for diverse women with lupus nephritis (IDEA-WON): A randomized controlled trial.

BackgroundTreatment decision-making regarding immunosuppressive therapy is challenging for individuals with lupus. We assessed the effectiveness of a decision aid for immunosuppressive therapy in lupus nephritis.Methods and findingsIn a United States multicenter, open-label, randomized controlled trial (RCT), adult women with lupus nephritis, mostly from racial/ethnic minority backgrounds with low socioeconomic status (SES), seen in in- or outpatient settings, were randomized to an individualized, culturally tailored, computerized decision aid versus American College of Rheumatology (ACR) lupus pamphlet (1:1 ratio), using computer-generated randomization. We hypothesized that the co-primary outcomes of decisional conflict and informed choice regarding immunosuppressive medications would improve more in the decision aid group. Of 301 randomized women, 298 were analyzed; 47% were African-American, 26% Hispanic, and 15% white. Mean age (standard deviation [SD]) was 37 (12) years, 57% had annual income of <$40,000, and 36% had a high school education or less. Compared with the provision of the ACR lupus pamphlet (n = 147), participants randomized to the decision aid (n = 151) had (1) a clinically meaningful and statistically significant reduction in decisional conflict, 21.8 (standard error [SE], 2.5) versus 12.7 (SE, 2.0; p = 0.005) and (2) no difference in informed choice in the main analysis, 41% versus 31% (p = 0.08), but clinically meaningful and statistically significant difference in sensitivity analysis (net values for immunosuppressives positive [in favor] versus negative [against]), 50% versus 35% (p = 0.006). Unresolved decisional conflict was lower in the decision aid versus pamphlet groups, 22% versus 44% (p < 0.001). Significantly more patients in the decision aid versus pamphlet group rated information to be excellent for understanding lupus nephritis (49% versus 33%), risk factors (43% versus 27%), medication options (50% versus 33%; p ≤ 0.003 for all); and the ease of use of materials was higher in the decision aid versus pamphlet groups (51% versus 38%; p = 0.006). Key study limitations were the exclusion of men, short follow-up, and the lack of clinical outcomes, including medication adherence.ConclusionsAn individualized decision aid was more effective than usual care in reducing decisional conflict for choice of immunosuppressive medications in women with lupus nephritis.Trial registrationClinicaltrials.gov, NCT02319525

Vertebral fractures among breast cancer survivors in China: a cross-sectional study of prevalence and health services gaps

Abstract Background Breast cancer survivors are at high risk for fracture due to cancer treatment-induced bone loss, however, data is scarce regarding the scope of this problem from an epidemiologic and health services perspective among Chinese women with breast cancer. Methods We designed a cross-sectional study comparing prevalence of vertebral fractures among age- and BMI-matched women from two cohorts. Women in the Breast Cancer Survivors cohort were enrolled from a large cancer hospital in Beijing. Eligibility criteria included age 50–70 years, initiation of treatment for breast cancer at least 5 years prior to enrollment, and no history of metabolic bone disease or bone metastases. Data collected included sociodemographic characteristics; fracture-related risk factors, screening and preventive measures; breast cancer history; and thoracolumbar x-ray. The matched comparator group was selected from participants enrolled in the Peking Vertebral Fracture Study, an independent cohort of healthy community-dwelling postmenopausal women from Beijing. Results Two hundred breast cancer survivors were enrolled (mean age 57.5 ± 4.9 years), and compared with 200 matched healthy women. Twenty-two (11%) vertebral fractures were identified among breast cancer survivors compared with 7 (3.5%) vertebral fractures in the comparison group, yielding an adjusted odds ratio for vertebral fracture of 4.16 (95%CI 1.69–10.21, p < 0.01). The majority had early stage (85.3%) and estrogen and/or progesterone receptor positive (84.6%) breast cancer. Approximately half of breast cancer survivors reported taking calcium supplements, 6.1% reported taking vitamin D supplements, and only 27% reported having a bone density scan since being diagnosed with breast cancer. Conclusions Despite a four-fold increased odds of prevalent vertebral fracture among Chinese breast cancer survivors in our study, rates of screening for osteoporosis and fracture risk were low reflecting a lack of standardization of care regarding cancer-treatment induced bone loss

Increased Risk of Fragility Fractures among HIV Infected Compared to Uninfected Male Veterans

BACKGROUND: HIV infection has been associated with an increased risk of fragility fracture. We explored whether or not this increased risk persisted in HIV infected and uninfected men when controlling for traditional fragility fracture risk factors. METHODOLOGY/PRINCIPAL FINDINGS: Cox regression models were used to assess the association of HIV infection with the risk for incident hip, vertebral, or upper arm fracture in male Veterans enrolled in the Veterans Aging Cohort Study Virtual Cohort (VACS-VC). We calculated adjusted hazard ratios comparing HIV status and controlling for demographics and other established risk factors. The sample consisted of 119,318 men, 33% of whom were HIV infected (34% aged 50 years or older at baseline, and 55% black or Hispanic). Median body mass index (BMI) was lower in HIV infected compared with uninfected men (25 vs. 28 kg/m²; p<0.0001). Unadjusted risk for fracture was higher among HIV infected compared with uninfected men [HR: 1.32 (95% CI: 1.20, 1.47)]. After adjusting for demographics, comorbid disease, smoking and alcohol abuse, HIV infection remained associated with an increased fracture risk [HR: 1.24 (95% CI: 1.11, 1.39)]. However, adjusting for BMI attenuated this association [HR: 1.10 (95% CI: 0.97, 1.25)]. The only HIV-specific factor associated with fragility fracture was current protease inhibitor use [HR: 1.41 (95% CI: 1.16, 1.70)]. CONCLUSIONS/SIGNIFICANCE: HIV infection is associated with fragility fracture risk. This risk is attenuated by BMI