Mixed-Methods Assessment of Maternal Anxiety During the First 8 Weeks After Birth.

OBJECTIVE: To describe and compare the experiences of postpartum anxiety among women with generalized anxiety and postpartum-specific anxiety. DESIGN: Prospective, longitudinal, mixed methods. SETTING: Academic tertiary center in the mid-Atlantic United States. Study activities were remote. PARTICIPANTS: Women at 1 to 8 weeks after birth (N = 34). METHODS: We used mobile surveys to measure daily anxiety ratings and responses to open-ended, theory-driven questions about anxiety. We used the cutoff scores on the State-Trait Anxiety Inventory and Postpartum Specific Anxiety Scale administered 8 weeks after birth to determine the presence of generalized and postpartum-specific anxiety. Participants' responses were analyzed with qualitative description and sorted by anxiety questionnaire scores at 8 weeks after birth. We compared qualitative findings between participants with generalized anxiety and postpartum-specific anxiety. RESULTS: Participants with generalized anxiety had high levels of overwhelm and felt ill-equipped to handle daily stressors, whereas those with postpartum-specific anxiety felt adept at coping. Participants with generalized anxiety lacked emotional and physical support, and those with postpartum-specific anxiety reported more physical but variable emotional support. Sources of daily anxiety in participants with postpartum-specific anxiety were infant-centric (e.g., infant health, end of maternity leave, breastfeeding), whereas anxiety sources for participants with generalized anxiety were varied (e.g., self-health, partner concerns). Participants with generalized anxiety versus postpartum-specific anxiety were more likely to be multiparous and have comorbid depression symptoms. CONCLUSION: Symptoms, levels of perceived support, and sources of anxiety differed between participants with generalized versus postpartum-specific anxiety. Our findings can inform postpartum anxiety screening strategies and support interventions.

Leadership for Addressing Aging in America: The Health and Aging Policy Fellowship.

The Health and Aging Policy Fellows Program funded by The John A. Hartford Foundation and Atlantic Philanthropies trains future leaders to influence healthcare policy, systems, and program development in aging. Following a rigorous residential training in Washington, DC, Fellows establish placements of up to 1 year in the executive, legislative, or judicial branch of government, at a federal agency, state or community agency or committee, or with a nongovernmental organization. The 2016-2017 Fellows' activities represent a broad scope of work, including contributions to national and local policy priorities expected to build over time far beyond the core fellowship year.

Using mobile health technology to deliver decision support for self-monitoring after lung transplantation.

BACKGROUND: Lung transplant recipients (LTR) experience problems recognizing and reporting critical condition changes during their daily health self-monitoring. Pocket PATH(®), a mobile health application, was designed to provide automatic feedback messages to LTR to guide decisions for detecting and reporting critical values of health indicators. OBJECTIVES: To examine the degree to which LTR followed decision support messages to report recorded critical values, and to explore predictors of appropriately following technology decision support by reporting critical values during the first year after transplantation. METHODS: A cross-sectional correlational study was conducted to analyze existing data from 96 LTR who used the Pocket PATH for daily health self-monitoring. When a critical value is entered, the device automatically generated a feedback message to guide LTR about when and what to report to their transplant coordinators. Their socio-demographics and clinical characteristics were obtained before discharge. Their use of Pocket PATH for health self-monitoring during 12 months was categorized as low (≤25% of days), moderate (>25% to ≤75% of days), and high (>75% of days) use. Following technology decision support was defined by the total number of critical feedback messages appropriately handled divided by the total number of critical feedback messages generated. This variable was dichotomized by whether or not all (100%) feedback messages were appropriately followed. Binary logistic regression was used to explore predictors of appropriately following decision support. RESULTS: Of the 96 participants, 53 had at least 1 critical feedback message generated during 12 months. Of these 53 participants, the average message response rate was 90% and 33 (62%) followed 100% decision support. LTR who moderately used Pocket PATH (n=23) were less likely to follow technology decision support than the high (odds ratio [OR]=0.11, p=0.02) and low (OR=0.04, p=0.02) use groups. The odds of following decision support were reduced in LTR whose income met basic needs (OR=0.01, p=0.01) or who had longer hospital stays (OR=0.94, p=0.004). A significant interaction was found between gender and past technology experience (OR=0.21, p=0.03), suggesting that with increased past technology experience, the odds of following decision support to report all critical values decreased in men but increased in women. CONCLUSIONS: The majority of LTR responded appropriately to mobile technology-based decision support for reporting recorded critical values. Appropriately following technology decision support was associated with gender, income, experience with technology, length of hospital stay, and frequency of use of technology for self-monitoring. Clinicians should monitor LTR, who are at risk for poor reporting of recorded critical values, more vigilantly even when LTR are provided with mobile technology decision support.

Development and field testing of Teen Pocket PATH(®), a mobile health application to improve medication adherence in adolescent solid organ recipients.

Applying principles of user-centered design, we iteratively developed and tested the prototype of TPP, an mHealth application to promote medication adherence and enhance communication about medication management between adolescents and primary caregivers. A purposive sample of seven adolescent solid organ transplant recipients who were ≥ one yr post-transplant and their primary caregivers participated. Participants completed up to three face-to-face laboratory usability sessions, a 6-week field test, and a debriefing session. Primary caregivers participated in an additional usability telephone session. Participants completed usability and satisfaction measures. Sample included liver (n = 4), heart (n = 2), and lung (n = 1) recipients aged 11-18 yr (57% were female, 86% were Caucasian), and nine primary caregivers aged 42-61 yr (88.9% were parents, 88% were female, 88% were Caucasian). Ninety percent of the adolescents endorsed the graphs or logs of missed/late medication dosing as useful and 100% endorsed the remaining features (e.g., medication list, dose time reminders/warnings) as useful. All adolescents expressed interest in using TPP for monitoring medications and satisfaction with the automatic messaging between adolescent and caregiver versions of the application. Adolescents unanimously found TPP easy to use. TPP shows promise as an mHealth adherence tool.

Depression and Anxiety as Risk Factors for Morbidity and Mortality After Organ Transplantation: A Systematic Review and Meta-Analysis.

BACKGROUND: Depression and anxiety are common mental health problems in transplant populations. There is mixed evidence concerning whether they increase morbidity and mortality risks after transplantation. 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 posttransplant mortality, graft loss, acute graft rejection, chronic rejection, cancer, infection, and rehospitalization. RESULTS: Twenty-seven studies (10 heart, total n = 1738; 6 liver, n = 1063; 5 kidney, n = 49515; 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 before or early after transplantation. 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% confidence interval [95% CI], 1.34-2.05; 20 studies). Meta-regression indicated that risk was stronger in studies that did (vs 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; 95% CI, 1.21-2.26, 3 studies). Depression was not associated with other morbidities (each morbidity was assessed in 1-4 studies). Anxiety did not significantly increase mortality risk (RR, 1.39; 95% CI, 0.85-2.27, 6 studies) or morbidity risks (assessed in single studies). CONCLUSIONS: Depression increases risk for posttransplant 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 posttransplant mortality requires study.

Patient Portals and Patient Engagement: A State of the Science Review.

BACKGROUND: Patient 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. OBJECTIVE: The 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. METHODS: We 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. RESULTS: We 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. CONCLUSIONS: Current 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.

Willingness to pay for quality of life technologies to enhance independent functioning among baby boomers and the elderly adults.

PURPOSE: We report the results of a study designed to assess whether and how much potential individual end users are willing to pay for Quality of Life Technologies (QoLTs) designed to enhance functioning and independence. DESIGN AND METHODS: We carried out a web survey of a nationally representative sample of U.S. baby boomers (aged 45-64; N = 416) and older adults (aged 65 and greater, N = 114). Respondents were first instructed to assume that they needed help with kitchen activities/personal care and that technology was available to help with things like meal preparation/dressing, and then they were asked the most they would be willing to pay each month out of pocket for these technologies. RESULTS: We modeled willingness to pay some (72% of respondents) versus none (28%), and the most people were willing to pay. Those willing to pay something were on average willing to pay a maximum of $40.30 and $45.00 per month for kitchen and personal care technology assistance, respectively. Respondents concerned about privacy or who were currently using assistive technology were less willing to pay. Respondents with higher incomes, who were Hispanic, or who perceived a higher likelihood of needing help in the future were more willing to pay. IMPLICATIONS: Consumers' willingness to pay out of pocket for technologies to improve their well-being and independence is limited. In order to be widely adopted, QoLTs will have to be highly cost effective so that third party payers such as Medicare and private insurance companies are willing to pay for them.

Nature and correlates of post-traumatic stress symptomatology in lung transplant recipients.

BACKGROUND: The burden of post-traumatic stress disorder (PTSD) symptoms may be associated with worse outcomes after transplantation. Little is known about the prevalence and correlates of PTSD symptoms in lung transplant recipients. METHODS: We conducted a cross-sectional study of lung transplant recipients between April 2008 and February 2010 at a single center. The PTSD Checklist was used to determine the burden of PTSD symptomatology (total score) and percent of subjects with a provisional PTSD diagnosis (validated algorithms). We assessed the relationship between PTSD symptom burden and patient characteristics with multivariable logistic modeling. RESULTS: We enrolled 210 subjects (response rate 91%). Most patients were female (50%), and Caucasian (89%). The median age was 59 (interquartile range [IQR] 48 to 63) years and the median time between transplant and follow-up was 2.4 (IQR 0.7 to 5.3) years. Clinically significant PTSD symptomatology was observed in 12.6% (8.4% to 17.9%) of subjects. Subjects were more likely to endorse symptoms of re-experiencing (29.5%) and arousal (33.8%) than avoidant symptoms (18.4%). Multivariable linear regression showed higher PTSD symptom scores among recipients who were: younger (p < 0.001); without private insurance (p = 0.001); exposed to trauma (p < 0.001); or diagnosed with bronchiolitis obliterans syndrome (p = 0.005). CONCLUSIONS: Overall prevalence of PTSD (12.6%) in our study was two times higher than the general population. Patient characteristics found to be associated with an increased burden of PTSD symptoms may be useful to consider in future interventions designed to reduce this comorbidity.

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 (SD) 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 < 0.001) and greater psychological distress (p < 0.001). 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.

Exploring the meaning of chronic rejection after lung transplantation and its impact on clinical management and caregiving.

Although the literature continues to portray chronic rejection after lung transplantation as ominous with no known treatment, no studies have examined family and clinician caregivers' perceptions of the diagnosis of chronic rejection and its impact on the course of clinical care. We explored the meaning and impact of chronic rejection from the perspective of family (n=10) and clinician (n=3) caregivers. We found that family caregivers considered the onset of chronic rejection to be inevitable, irreversible, unpredictable, and going back to pretransplant. Clinicians considered chronic rejection as a harbinger of deterioration and peril and expressed trepidation about informing recipients and their family caregivers about the diagnosis. Despite the heightened caregiving duties and challenges of treating chronic rejection, its unpredictable course and the prospect of retransplant instilled hope for stabilization or cure among most clinicians and caregivers, leading them to support recipients' wishes to pursue potentially futile treatments. Until recipients were no longer competent, caregivers believed all treatment options (including retransplant) had been exhausted, or suffering was prolonged, caregivers were reluctant to halt extraordinary treatment measures. Caregivers perceived that certainty regarding poor prognosis was required for palliative care and that palliative care was end-of-life care. Consequently, trials of aggressive treatment typically precluded palliative care.