Kristin M. Kostick

Ventricular assist devices: a review of psychosocial risk factors and their impact on outcomes.

BACKGROUND Psychosocial contraindications for ventricular assist devices (VADs) remain particularly nebulous and are driven by institution-specific practices. Our multi-institutional, multidisciplinary workgroup conducted a review with the goal of addressing the following research question: How are preoperative psychosocial domains predictive of or associated with postoperative VAD-related outcomes? Answers to this question could contribute to the development of treatment-specific (contra) indications for patients under consideration for mechanical devices. METHODS AND RESULTS We identified 5 studies that examined psychosocial factors and their relationship to postoperative VAD-related outcomes. Our results suggest that 3 psychosocial variables are possibly associated with VAD-related outcomes: depression, functional status, and self-care. Of the few studies that exist, the generalizability of findings is constrained by a lack of methodologic rigor, inconsistent terminology, and a lack of conceptual clarity. CONCLUSIONS This review should serve as a call for research. Efforts to minimize psychosocial risk before device placement can only be successful insofar as VAD programs can clearly identify who is at risk for suboptimal outcomes.

Content Analysis of Social Media Related to Left Ventricular Assist Devices

Background—Social media have the potential to offer important benefits for patient education, support, and shared decision making. Despite the proliferation of social media use during the past decade, little is known about the scope and quality of available information, or the purposes that social media sites serve for patient decisional and support needs. Methods and Results—We conducted a mixed method study, including content analysis of social media and principal components analysis analysis of data sites discussing left ventricular assist device treatment for heart failure. This study explored aspects of interactivity, user-friendliness, appeal, medium, purpose, audience, and accuracy of information. Higher levels of interactivity (eg, posting comments) seem to enhance the appeal and usability of available information but also introduce greater potential for inaccuracy and inconsistency. The current lack of oversight into the content and quality of available information constitute a challenge for the reliable use of social media as forums for information-seeking and social network–based support. Conclusions—We conclude that social media outlets constitute a promising source of informational and psychosocial support for patients, caregivers, and candidates, and if used in conjunction with patient-provider dialog, can contribute to informed decision making by facilitating reflection and discussion of personal concerns, values, and informational needs.

Participant and Staff Experiences in a Peer-Delivered HIV Intervention with Injection Drug Users

We explore ethical issues faced by investigators as they conduct research as part of a peer-delivered HIV/AIDS risk reduction program for injection drug users (IDUs). Staff and participant experiences in peer-delivered interventions among IDUs have come under scrutiny by ethics researchers because of their potential to inadvertently and negatively impact participant rehabilitation due to continued engagement with drug-using networks during the course of outreach. This study explores whether enhanced communication of participant concerns and experiences with clinic and research staff helps to reduce inadvertent malfeasance in peer-delivered drug treatment interventions. Results contribute to the development of patient support infrastructure in peer-delivered risk reduction programs involving IDUs.

Translation of the Risk Avoidance Partnership (RAP) for Implementation in Outpatient Drug Treatment Clinics

Abstract Scientific literature increasingly calls for studies to translate evidence-based interventions into real-world contexts balancing fidelity to the original design and fit to the new setting. The Risk Avoidance Partnership (RAP) is a health promotion intervention originally designed to train active drug users to become Peer Health Advocates. A theoretically driven approach was used to adapt RAP to fit implementation in outpatient methadone treatment clinics and pilot it with clinic patients. Ethnographic observations and process tracking documented the RAP translation and pilot experience, and clinic and community characteristics relevant to program implementation. Clinic administrators, staff, and patients were interviewed on their values, capacities, interest in RAP, perceived challenges of implementing RAP in drug treatment clinics, and experiences during the pilot. Findings indicated that RAP core components can be met when implemented in these settings and RAP can fit with the goals, interests, and other programs of the clinic. Balancing fidelity and fit requires recognition of the mutual impacts RAP and the clinic have on each other, which generate new interactions among staff and require ongoing specification of RAP to keep abreast of clinic and community changes. Collaboration of multiple stakeholders significantly benefited translation and pilot processes.

A Multisite Randomized Controlled Trial of a Patient-Centered Ventricular Assist Device Decision Aid (VADDA Trial)

BACKGROUND Studies indicate that decision making and informed consent among patients considering left ventricular assist device (LVAD) support for advanced heart failure could be improved. In the VADDA (Ventricular Assist Device Decision Aid) trial, we tested a patient-centered decision aid (DA) to enhance the quality of decision making about LVAD therapy. METHODS After an extensive user-centered design process, we conducted a multisite randomized trial of the DA compared with standard education (SE) among inpatients considering LVAD treatment for advanced heart failure The main outcome was LVAD knowledge at 1 week and 1 month after administration of the DA versus the SE, according to a validated scale. Secondary measures included prespecified quality decision making measures recommended by the International Patient Decision Aid Standards collaboration. RESULTS Of 105 eligible patients, 98 consented and were randomly assigned to the DA and SE arms. Patients receiving the VADDA exhibited significantly greater LVAD knowledge than the SE group at 1 week of follow-up (P = .01) but not at 1 month (P = .47). No differences were found between DA and SE patients in rates of acceptance versus decline of LVAD treatment (85% vs 78%; P = .74). Recipients in the DA arm reported greater satisfaction with life after implantation compared with nonrecipients (28 vs 23 out of 30; P = .008), although both arms reported high satisfaction. Patients rated the DA high in acceptability and usability. CONCLUSIONS The VADDA enhances LVAD knowledge, particularly in the short term (1 week) during the peak period of decision making. The DA does not encourage decision direction and reflects patient, caregiver, and physician preferences for content and format. CLINICAL TRIAL REGISTRATION https://clinicaltrials.gov/ct2/show/NCT02248974. The trial is registered with clinicaltrials.gov (NCT02248974).

Balancing risk, interpersonal intimacy and agency: perspectives from marginalised women in Zambia

Abstract Women are most exposed to sexual health risks within their marital relationships, primarily due to the sexually risky behaviours of their spouses. Studies show that expanding agency is critical for women to mitigate both physical and sexual health risks and is linked to increased psycho-social well-being and economic independence. Drawing on qualitative and quantitative primary data collected from a peri-urban community in Zambia, this paper explores how women exert agency in a community where few educational and economic opportunities and substantial food insecurity exacerbate women’s risk for HIV within their marital relationships. It also examines how expressions of agency within marital unions can reduce HIV risk exposure and lead to socio-economic benefits. However, expressions of agency can also create physical, psycho-social and sexual health risks, particularly when spouses do not support independent decision-making and actions that women consider necessary to support the household and maintain intimacy. Findings highlight the importance of community involvement and addressing harmful socio-cultural norms to foster the realisation of women’s agency.

The role of Ecstasy (MDMA) in managing intimacy and conflict in stable relationships

Abstract This paper discusses motivations for the use of MDMA among young adults in intimate relationships living in resource poor environments, where structural constraints limit potential for economic mobility and impact upon interpersonal relations. Drawing from in-depth interviews with men and women in intimate relationships with one or more partners, we report the range of motivations for MDMA use and their association with indicators of relationship quality, specifically trust and romantic exclusivity. Findings demonstrate that both men and women use MDMA primarily for the purpose of sexual enjoyment. However, men report the use of MDMA for sexual enjoyment more often, while women more frequently report the use of MDMA to compensate for psychological or physical displeasure, particularly in relationships characterised by distrust. We discuss how these motivations to use MDMA are shaped by gender norms and larger contextual and socio-economic factors and conclude with a call for more relational and sexual counselling opportunities for urban young adults to avoid MDMA use for self-medication.

Patients’ Perspectives on Transplantation While Undergoing Left Ventricular Assist Device Support

Left-ventricular assist device (LVAD) therapy is a growing mechanical circulatory support therapy used to treat patients with advanced heart failure. There is a general assumption among clinicians that patients would prefer to accept a heart to any other treatment were they eligible. However, little research has been done to clarify the nuances of patient treatment preferences for LVAD therapy versus transplantation. The objective of this study was to investigate this treatment preference assumption from patients’ perspectives. In a single-site study, 15 LVAD patients, 15 LVAD candidates, 15 LVAD decliners, and 15 LVAD caregivers (n = 60) participated in structured, in-depth interviews to assess decisional processes and treatment preferences for advanced heart failure. The interview guides were consistent with the Ottawa framework on decision-making processes. All participants were identified by the LVAD coordination team and recruited consecutively between February and November 2014. The patient and candidate groups included both LVAD designations: destination therapy (n = 22), bridge-to-transplant (n = 4), as well as four participants who deferred designation pending worsening clinical status. The interviews were analyzed using qualitative description with constant comparisons, aided by ATLAS.ti. Although LVAD eligible patients generally show a preference for heart transplantation as the ideal treatment for heart failure, some patients begin to show ambivalence as they experience LVAD therapy and begin to prefer LVAD as a long-term, destination treatment. Some themes that emerged from the interviews concerning transplantation centered on the consequences of multiple major surgeries (i.e., LVAD placement followed by heart transplantation, n = 18), fears surrounding lifestyle changes of accepting a heart transplant (n = 14) and life satisfaction with an LVAD as a “new normal” (n = 18). Findings suggest that experience with an LVAD can sometimes cause ambivalence about transplant with some patients preferring LVAD as destination even when transplant is an option. We provide clinical and programmatic implications of this, concluding with practical recommendations for how to fully address patients’ goals of treatment as their health and situation changes over time.

Left Ventricular Assist Devices: The Authors Reply.

without prior written permission from the Publisher. All rights reserved. or mechanical, including photocopying or by information storage or retrieval systems, may be reproduced, displayed, or transmitted in any form or by any means, electronic States copyright law (Title 17, U.S. Code), no part of by Project HOPE The People-to-People Health Foundation. As provided by United Suite 600, Bethesda, MD 20814-6133. Copyright

A Team To Inform Patients’ Decisions: The Authors Reply

without prior written permission from the Publisher. All rights reserved. or mechanical, including photocopying or by information storage or retrieval systems, may be reproduced, displayed, or transmitted in any form or by any means, electronic States copyright law (Title 17, U.S. Code), no part of by Project HOPE The People-to-People Health Foundation. As provided by United Suite 600, Bethesda, MD 20814-6133. Copyright