Learning to Overcome Barriers to Electronic Patient-Reported Outcome Implementation: Lessons From the Field.

#Implementation of #ePROs in real world settings, lessons learned.

Physicians' Hierarchy of Tumor Biomarkers for Optimizing Chemotherapy in Breast Cancer Care.

BACKGROUND: Tumor biomarkers are regularly used to guide breast cancer treatment and clinical trial enrollment. However, there remains a lack of knowledge regarding physicians' perspectives towards biomarkers and their role in treatment optimization, where treatment intensity is reduced to minimize toxicity. METHODS: Thirty-nine academic and community oncologists participated in semi-structured qualitative interviews, providing perspectives on optimization approaches to chemotherapy treatment. Interviews were audio-recorded, transcribed, and analyzed by 2 independent coders utilizing a constant comparative method in NVivo. Major themes and exemplary quotes were extracted. A framework outlining physicians' conception of biomarkers, and their comfortability with their use in treatment optimization, was developed. RESULTS: In the hierarchal model of biomarkers, level 1 is comprised of standard-of-care (SoC) biomarkers, defined by a strong level of evidence, alignment with national guidelines, and widespread utilization. Level 2 includes SoC biomarkers used in alternative contexts, in which physicians expressed confidence, yet less certainty, due to a lack of data in certain subgroups. Level 3, or experimental, biomarkers created the most diverse concerns related to quality and quantity of evidence, with several additional modulators. CONCLUSION: This study demonstrates that physicians conceptualize the use of biomarkers for treatment optimization in successive levels. This hierarchy can be used to guide trialists in the development of novel biomarkers and design of future trials.

Assessing the Impact of Family Caregivers in Clinical Encounter Participation on Patient Activation in the Metastatic Breast Cancer Setting.

Objective: Caregivers support individuals undergoing cancer treatment by assisting with activities, managing care, navigating healthcare systems, and communicating with care teams. We explored the quantity and quality of caregiver participation during recorded clinical appointments in women with metastatic breast cancer. Methods: This was a convergent parallel mixed methods study. Caregiver participation quality was operationalized using a summative thematic content analysis to identify and sum caregiver roles performed during appointments. Caregiver participation quantity was measured by calculating the proportion of speaking time. Participation quality and quantity were compared to patient activation, assessed using the Patient Activation Measure. Results: Fifty-three clinical encounters were recorded. Identified caregiver roles included: General Support; Management of Treatment or Medication; Treatment History; Decision-Making; Insurance or Money; Pharmacy; Scheduling; Travel Concerns; General Cancer Understanding; Patient Specific Cancer Understanding; Caregiver-Initiated or Emphasis on Symptom Severity; and Caregiver Back-Up of Patient Symptom Description. Caregivers averaged 5 roles (SD 3): 48% of patients had low quality (< 5 roles) and 52% had high quality (> 6 roles). Regarding quantity, caregivers spoke on average for 4% of the encounter, with 60% of patients having low quantity (< 4%) and 40% of patients having high quantity (> 4%). Greater quality and quantity of caregiver participation was associated with greater patient activation. Conclusions: Caregivers perform a variety of roles during oncological decision-making visits aiding both patient and provider. Greater participation in terms of quantity and quality by the caregiver was associated with greater patient activism, indicating a need for better integration of the caregiver in clinical decision-making environments.

Distance from a cultural model of substance use risk, internalization, and self-stigma in urban Brazil.

Introduction: A cognitive theory of culture as socially distributed cultural models has proven useful in research. Cultural models exist in two forms: the model shared by individuals in a social group, and individual versions of that model modified by personal experience. In previous research we documented a shared cultural model of substance use risk among a general population sample in urban Brazil. Here we examine how this model is distributed among persons under treatment for substance use/misuse and the implications for perceived and self-stigma. Methods: A convenience sample of 133 persons under treatment rated the influence of risk factors for substance use/misuse. The configuration of those ratings and the cultural distance of persons under treatment from the general population model were calculated. Degree of stigma perceived in the wider society and degree of self-stigma were also assessed. Results: Persons under treatment aggregate risk factors to a greater extent than the general population. Using a cultural distance metric, the more distant persons under treatment are from the general population model, the lower their self-stigma regarding substance use. Discussion: Some individuals under treatment separate their understanding of substance use/misuse from shared perspectives in the wider society, which in turn reduces self-stigma. These findings add an additional perspective on the relationship of culture and the individual.

Factors associated with completeness in documentation of diagnostic work-up and treatment in patients with breast cancer in Sudan.

Purpose: This study evaluates the relationship between geography and ethnicity on the completeness of documentation of diagnostic work-up and treatment modalities in Sudan for patients with breast cancer. Methods: This retrospective study used data abstracted from patients with breast cancer receiving cancer care at Sudan's largest cancer centre (Radiation and Isotopes Center Khartoum) in 2017. Patient demographic and clinical characteristics were abstracted from paper medical records. Odds ratios and 95% confidence intervals were estimated to evaluate complete diagnostic work-up on ethnic group, origin and residence using binomial logistic regression models. Results: Of 237 patients, the median age was 52 (interquartile range 43-61). Most often patients identified as Arab (68%), originated from Central, Northeastern and Khartoum regions (all 28%) and lived in the Khartoum region (52%). Overall, 49% had incomplete diagnostic work-up, with modest differences by ethnicity and geography. In adjusted analyses, non-statistical differences were found between the ethnic group, geographic origin and residence and having complete diagnostic work-up. For treatment modality, significant differences were observed between receptor status and receiving hormone therapy (p = 0.004). Only 28% of patients with HR+ breast cancer received hormonal therapy. For those with HR- or undocumented breast cancer subtype, 36% and 17% received hormone therapy, respectively. Conclusion: Approximately half of Sudanese patients with breast cancer had incomplete diagnostic work-up, irrespective of ethnicity and geography. Moreover, a high proportion of patients received inappropriate treatment. This underlines a considerable systems-based quality gap in care delivery, demanding efforts to improve diagnostic work-up for all patients with breast cancer in Sudan.

Medical Disease or Moral Defect? Stigma Attribution and Cultural Models of Addiction Causality in a University Population.

This study examines the knowledge individuals use to make judgments about persons with substance use disorder. First, we show that there is a cultural model of addiction causality that is both shared and contested. Second, we examine how individuals' understanding of that model is associated with stigma attribution. Research was conducted among undergraduate students at the University of Alabama. College students in the 18-25 age range are especially at risk for developing substance use disorder, and they are, perhaps more than any other population group, intensely targeted by drug education. The elicited cultural model includes different types of causes distributed across five distinct themes: Biological, Self-Medication, Familial, Social, and Hedonistic. Though there was cultural consensus among respondents overall, residual agreement analysis showed that the cultural model of addiction causality is a multicentric domain. Two centers of the model, the moral and the medical, were discovered. Differing adherence to these centers is associated with the level of stigma attributed towards individuals with substance use disorder. The results suggest that current approaches to substance use education could contribute to stigma attribution, which may or may not be inadvertent. The significance of these results for both theory and the treatment of addiction are discussed.