BackgroundPatient portals (ie, electronic personal health records tethered to institutional electronic health records) are recognized as a promising mechanism to support greater patient engagement, yet questions remain about how health care leaders, policy makers, and designers can encourage adoption of patient portals and what factors might contribute to sustained utilization.ObjectiveThe purposes of this state of the science review are to (1) present the definition, background, and how current literature addresses the encouragement and support of patient engagement through the patient portal, and (2) provide a summary of future directions for patient portal research and development to meaningfully impact patient engagement.MethodsWe reviewed literature from 2006 through 2014 in PubMed, Ovid Medline, and PsycInfo using the search terms “patient portal” OR “personal health record” OR “electronic personal health record”. Final inclusion criterion dictated that studies report on the patient experience and/or ways that patients may be supported to make competent health care decisions and act on those decisions using patient portal functionality.ResultsWe found 120 studies that met the inclusion criteria. Based on the research questions, explicit and implicit aims of the studies, and related measures addressed, the studies were grouped into five major topics (patient adoption, provider endorsement, health literacy, usability, and utility). We discuss the findings and conclusions of studies that address the five topical areas.ConclusionsCurrent research has demonstrated that patients’ interest and ability to use patient portals is strongly influenced by personal factors such age, ethnicity, education level, health literacy, health status, and role as a caregiver. Health care delivery factors, mainly provider endorsement and patient portal usability also contribute to patient’s ability to engage through and with the patient portal. Future directions of research should focus on identifying specific populations and contextual considerations that would benefit most from a greater degree of patient engagement through a patient portal. Ultimately, adoption by patients and endorsement by providers will come when existing patient portal features align with patients’ and providers’ information needs and functionality.

Background Depression and anxiety are common mental health problems in transplant populations. There is mixed evidence concerning whether they increase morbidity and mortality risks post-transplant. If such associations exist, additional risk reduction strategies may be needed. Methods Four bibliographic databases were searched from 1981 through September, 2014 for studies prospectively examining whether depression or anxiety (determined with diagnostic evaluations or standardized symptom scales) affected risk for post-transplant mortality, graft loss, acute graft rejection, chronic rejection, cancer, infection, and rehospitalization. Results Twenty-seven studies (10 heart, total n=1,738; 6 liver, n=1,063; 5 kidney, n=49,515; 4 lung, n=584; 1 pancreas, n=80; 1 mixed recipient sample, n=205) were identified. In each, depression and/or anxiety were typically measured pre- or early post-transplant. Follow-up for outcomes was a median of 5.8 years (range:0.50–18.0). Depression increased the relative risk (RR) of mortality by 65% (RR=1.65, 95% CI:1.34,2.05; 20 studies). Meta-regression indicated that risk was stronger in studies that did (v. did not) control for potential confounders(p=.032). Risk was unaffected by type of transplant or other study characteristics. Depression increased death-censored graft loss risk (RR=1.65, CI:1.21,2.26, 3 studies). Depression was not associated with other morbidities (each morbidity assessed in 1–4 studies). Anxiety did not significantly increase mortality risk (RR=1.39, CI:0.85,2.27, 6 studies) or morbidity risks (assessed in single studies). Conclusions Depression increases risk for post-transplant mortality. Few studies considered morbidities; the depression-graft loss association suggests that linkages with morbidities deserve greater attention. Depression screening and treatment may be warranted, although whether these activities would reduce post-transplant mortality requires study.

Background Adherence to the medical regimen after pediatric organ transplantation is important for maximizing good clinical outcomes. However, the literature provides inconsistent evidence regarding prevalence and risk factors for nonadherence posttransplant. Methods A total of 61 studies (30 kidney, 18 liver, 8 heart, 2 lung/heart-lung, and 3 with mixed recipient samples) were included in a meta-analysis. Average rates of nonadherence to 6 areas of the regimen, and correlations of potential risk factors with nonadherence, were calculated. Results Across all types of transplantation, nonadherence to clinic appointments and tests was most prevalent, at 12.9 cases per 100 patients per year (PPY). The immunosuppression nonadherence rate was 6 cases per 100 PPY. Nonadherence to substance use restrictions, diet, exercise and other healthcare requirements ranged from 0.6 to 8 cases per 100 PPY. Only the rate of nonadherence to clinic appointments and tests varied by transplant type: heart recipients had the lowest rate (4.6 cases per 100 PPY vs. 12.7–18.8 cases per 100 PPY in other recipients). Older age of the child, family functioning (greater parental distress, lower family cohesion), and the child’s psychological status (poorer behavioral functioning, greater distress) were among the psychosocial characteristics significantly correlated with poorer adherence. These correlations were small to modest in size (r =.12–.18). Conclusions These nonadherence rates provide benchmarks for clinicians to use to estimate patient risk. The identified psychosocial correlates of nonadherence are potential targets for intervention. Future studies should focus on improving the prediction of nonadherence risk and on testing interventions to reduce risk.