Quality of recipient-caregiver relationship and psychological distress are correlates of self-care agency after lung transplantation

Self-care behaviors are crucial for following the complex regimen after lung transplantation, yet little is known about recipients’ levels of self-care agency (the capability and willingness to engage in self-care behaviors) and its correlates. We examined levels of self-care agency and recipient characteristics (socio-demographics, psychological distress, quality of relationship with primary lay caregiver, and health locus of control) in 111 recipients. Based on Perceived Self-Care Agency scores, recipients were assigned to either the low or high self-care agency comparison group. Characteristics were compared between groups to identify characteristics likely to be associated with lower self-care agency. Mean (S.D.) score for self-care agency (scale range 53–265) was 223.02 (22.46). Recipients with lowest self-care agency scores reported significantly poorer quality of caregiver relationships (p < .001) and greater psychological distress (p < .001). After controlling for psychological distress, the quality of the recipient-caregiver relationship remained significantly associated with self-care agency. Every one-point decrease in the quality of caregiver relationship increased the risk of low self-care agency by 12%. Recipients with poorer caregiver relationships and greater psychological distress may need additional support to perform the self-care behaviors expected after lung transplantation

Adherence and health-related quality of life in adolescent liver transplant recipients

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/73568/1/j.1399-3046.2008.00901.x.pd

A New Electronic Monitoring Device to Measure Medication Adherence: Usability of the Helping Hand™

The aim of this study was to test the user performance, satisfaction and acceptability of the Helping Hand™ (B&O Medicom) electronic medication adherence monitor. Using a mixed-method design, we studied 11 kidney transplant patients and 10 healthy volunteers during three weeks. Although testing showed positive usability aspects, several areas requiring technical improvement were identified: the most important obstacles to usability and acceptability were the weak sound signal, problems loading the medication, and the fact that only one medication could be used at a time

Measuring adherence to antiretroviral therapy in northern Tanzania: feasibility and acceptability of the Medication Event Monitoring System

Peer reviewedPublisher PD

Mobile Applications and Wearables for Chronic Respiratory Disease Monitoring

Mobile health (mHealth) has tremendous potential to benefit patients, providers, and the entire healthcare system. Benefits for patients to adopt mHealth include more effective access to health providers, reduced costs of care, and better health control. For physicians and the healthcare system, reasons to embrace mHealth are enhanced health outcomes, facilitated access to patients for care, and decreased time required for administrative tasks. Currently, some mobile apps and wearables dedicated to respiratory health provide medical education and messaging services, enable diary logs, aid with disease self-management, and include educational games. Major challenges for mHealth to be widely adopted include lack of studies demonstrating effectiveness, limited access to technology by all patients, decreased adoption over time, high costs, and data privacy concerns

Achieving the "triple aim" for inborn errors of metabolism: a review of challenges to outcomes research and presentation of a new practice-based evidence framework

Across all areas of health care, decision makers are in pursuit of what Berwick and colleagues have called the “triple aim”: improving patient experiences with care, improving health outcomes, and managing health system impacts. This is challenging in a rare disease context, as exemplified by inborn errors of metabolism. There is a need for evaluative outcomes research to support effective and appropriate care for inborn errors of metabolism. We suggest that such research should consider interventions at both the level of the health system (e.g., early detection through newborn screening, programs to provide access to treatments) and the level of individual patient care (e.g., orphan drugs, medical foods). We have developed a practice- based evidence framework to guide outcomes research for inborn errors of metabolism. Focusing on outcomes across the triple aim, this framework integrates three priority themes: tailoring care in the context of clinical heterogeneity; a shift from “urgent care” to “opportunity for improvement”; and the need to evaluate the comparative effectiveness of emerging and established therapies. Guided by the framework, a new Canadian research network has been established to generate knowledge that will inform the design and delivery of health services for patients with inborn errors of metabolism and other rare diseases.This work was supported by a CIHR Emerging Team Grant (“Emerging team in rare diseases: acheiving the ‘triple aim’ for inborn errors of metabolism,” B.K. Potter, P. Chakraborty, and colleagues, 2012– 2017, grant no. TR3–119195). Current investigators and collaborators in the Canadian Inherited Metabolic Diseases Research Network are: B.K. Potter, P. Chakraborty, J. Kronick, D. Coyle, K. Wilson, M. Brownell, R. Casey, A. Chan, S. Dyack, L. Dodds, A. Feigenbaum, D. Fell, M. Geraghty, C. Greenberg, S. Grosse, A. Guttmann, A. Khan, J. Little, B. Maranda, J. MacKenzie, A. Mhanni, F. Miller, G. Mitchell, J. Mitchell, M. Nakhla, M. Potter, C. Prasad, K. Siriwardena, K.N. Speechley, S. Stocker, L. Turner, H. Vallance, and B.J. Wilson. Members of our external advisory board are D. Bidulka, T. Caulfield, J.T.R. Clarke, C. Doiron, K. El Emam, J. Evans, A. Kemper, W. McCormack, and A. Stephenson Julian. J. Little is supported by a Canada Research Chair in Human Genome Epidemiology. K. Wilson is supported by a Canada Research Chair in Public Health Policy