Health-related quality of life and psychological indicators of thriving 15-19 years after heart or lung transplantation.

BACKGROUND: Survival into the second decade after cardiothoracic transplantation (CTX) is no longer uncommon. Few data exist on any health-related quality of life (HRQOL) impairments survivors face, or whether they may even experience positive psychological outcomes indicative of "thriving" (e.g., personal growth). We provide such data in a long-term survivor cohort. METHODS: Among 304 patients prospectively studied across the first 2 years post-CTX, we re-interviewed patients ≥15 years post-CTX. We (a) examined levels of HRQOL and positive psychological outcomes (posttraumatic growth related to CTX, purpose in life, life satisfaction) at follow-up, (b) evaluated change since transplant with mixed-effects models, and (c) identified psychosocial and clinical correlates of study outcomes with multivariable regression. RESULTS: Of 77 survivors, 64 (83%) were assessed (35 heart, 29 lung recipients; 15-19 years post-CTX). Physical HRQOL was poorer than the general population norm and earlier post-transplant levels (P's < .001). Mental HRQOL exceeded the norm (P < .001), with little temporal change (P = .070). Mean positive psychological outcome scores exceeded scales' midpoints at follow-up. Life satisfaction, assessed longitudinally, declined over time (P < .001) but remained similar to the norm at follow-up. Recent hospitalization and dyspnea increased patients' likelihood of poor physical HRQOL at follow-up (P's ≤ .022). Lower sense of mastery and poorer caregiver support lessened patients' likelihood of positive psychological outcomes (P's ≤ .049). Medical comorbidities and type of CTX were not associated with study outcomes at follow-up. CONCLUSIONS: Despite physical HRQOL impairment, long-term CTX survivors otherwise showed favorable outcomes. Clinical attention to correlates of HRQOL and positive psychological outcomes may help maximize survivors' well-being.

Promoting medication adherence from the perspective of adolescent and young adult kidney transplant recipients, parents, and health care professionals: A TAKE-IT TOO study.

Medication non-adherence is an important factor limiting allograft survival after kidney transplantation in AYA. Some interventions, including the TAKE-IT, showed some success in promoting adherence but the potential for scalability and use in routine clinical practice is limited. We applied user-centered design to gather the perspectives of recipients, parents, and health professionals concerning their needs, challenges, and potential intervention strategies to design an optimal, multi-component medication adherence intervention. The qualitative study was conducted at four Canadian and three American kidney transplant programs. Separate focus groups for recipients, parents, and health professionals were convened to explore these stakeholders' perspectives. Directed content analysis was employed to identify themes that were shared vs distinct across stakeholders. All stakeholder groups reported challenges related to taking medications on time in the midst of their busy schedules and the demands of transitioning toward independence during adolescence. The stakeholders also made suggestions for the multi-component behavioral intervention, including an expanded electronic pillbox and companion website, education materials, and customized digitized features to support shared responsibility and communication among recipients, parents, and health professionals. Several suggestions regarding the functionality and features of the potential intervention reported in this early stage will be explored in more depth as the iterative process unfolds. Our approach to actively involve all stakeholders in the process increases the likelihood of designing an adherence intervention that is truly user-informed and fit for the clinical setting.

A Portable System for Remote Rehabilitation Following a Total Knee Replacement: A Pilot Randomized Controlled Clinical Study.

Rehabilitation has been shown to improve functional outcomes following total knee replacement (TKR). However, its delivery and associated costs are highly variable. The authors have developed and previously validated the accuracy of a remote (wearable) rehabilitation monitoring platform (interACTION). The present study's objective was to assess the feasibility of utilizing interACTION for the remote management of rehabilitation after TKR and to determine a preliminary estimate of the effects of the interACTION system on the value of rehabilitation. Specifically, we tested post-operative outpatient rehabilitation supplemented with interACTION (n = 13) by comparing it to a standard post-operative outpatient rehabilitation program (n = 12) using a randomized design. Attrition rates were relatively low and not significantly different between groups, indicating that participants found both interventions acceptable. A small (not statistically significant) decrease in the number of physical therapy visits was observed in the interACTION Group, therefore no significant difference in total cost could be observed. All patients and physical therapists in the interACTION Group indicated that they would use the system again in the future. Therefore, the next steps are to address the concerns identified in this pilot study and to expand the platform to include behavioral change strategies prior to conducting a full-scale randomized controlled trial. Trial registration: ClinicalTrials.gov NCT02646761 "interACTION: A Portable Joint Function Monitoring and Training System for Remote Rehabilitation Following TKA" 6 January 2016.

The Use of Technology to Support Precision Health in Nursing Science.

PURPOSE: This article outlines how current nursing research can utilize technology to advance symptom and self-management science for precision health and provides a roadmap for the development and use of technologies designed for this purpose. APPROACH: At the 2018 annual conference of the National Institute of Nursing Research (NINR) Research Centers, nursing and interdisciplinary scientists discussed the use of technology to support precision health in nursing research projects and programs of study. Key themes derived from the presentations and discussion were summarized to create a proposed roadmap for advancement of technologies to support health and well-being. CONCLUSIONS: Technology to support precision health must be centered on the user and designed to be desirable, feasible, and viable. The proposed roadmap is composed of five iterative steps for the development, testing, and implementation of technology-based/enhanced self-management interventions. These steps are (a) contextual inquiry, focused on the relationships among humans, and the tools and equipment used in day-to-day life; (b) value specification, translating end-user values into end-user requirements; (c) design, verifying that the technology/device can be created and developing the prototype(s); (d) operationalization, testing the intervention in a real-world setting; and (e) summative evaluation, collecting and analyzing viability metrics, including process data, to evaluate whether the technology and the intervention have the desired effect. CLINICAL RELEVANCE: Interventions using technology are increasingly popular in precision health. Use of a standard multistep process for the development and testing of technology is essential.

Shedding light on an unknown reality in solid organ transplant patients' self-management: A contextual inquiry study.

Traditional quantitative and qualitative research methods inadequately capture the complexity of patients' daily self-management. Contextual inquiry methodology, using home visits, allows a more in-depth understanding of how patients integrate immunosuppressive medication intake, physical activity, and healthy eating in their daily lives, and which difficulties they experience when doing so. This mixed-method study comprised 2 home visits in 19 purposively selected adult heart, lung, liver, and kidney transplant patients, asking them to demonstrate how they implement the aforementioned health behaviors. Meanwhile, conversations were audio-taped and photographs were taken. Audio-visual materials were coded using directed content analysis. Difficulties and supportive strategies were identified via inductive thematic analysis. We learned that few patients understood what "sufficiently active" means. Physical discomforts and poor motivation created variation across activity levels observed. Health benefits of dietary guidelines were insufficiently understood, and their implementation into everyday life considered difficult. Many underestimated the strictness of immunosuppressive medication intake, and instructions on handling late doses were unclear. Interruptions in routine and busyness contributed to nonadherence. We also learned that professionals often recommend supportive strategies, which patients not always like or need. This contextual inquiry study revealed unique insights, providing a basis for patient-tailored self-management interventions.

Technology Experience of Solid Organ Transplant Patients and Their Overall Willingness to Use Interactive Health Technology.

BACKGROUND: The use of interactive health technology (IHT) is a promising pathway to tackle self-management problems experienced by many chronically ill patients, including solid organ transplant (Tx) patients. Yet, to ensure that the IHT is accepted and used, a human-centered design process is needed, actively involving end users in all steps of the development process. A first critical, predevelopment step involves understanding end users' characteristics. This study therefore aims to (a) select an IHT platform to deliver a self-management support intervention most closely related to Tx patients' current use of information and communication technologies (ICTs), (b) understand Tx patients' overall willingness to use IHT for self-management support, and investigate associations with relevant technology acceptance variables, and (c) explore Tx patients' views on potential IHT features. DESIGN AND METHODS: We performed a cross-sectional, descriptive study between October and December 2013, enrolling a convenience sample of adult heart, lung, liver, and kidney Tx patients from the University Hospitals Leuven, Belgium. Broad inclusion criteria were applied to ensure a representative patient sample. We used a 35-item newly designed interview questionnaire to measure Tx patients' use of ICTs, their overall willingness to use IHT, and their views on potential IHT features, as well as relevant technology acceptance variables derived from the Unified Theory of Acceptance and Use of Technology and a literature review. Descriptive statistics were used as appropriate, and an ordinal logistic regression model was built to determine the association between Tx patients' overall willingness to use IHT, the selected technology acceptance variables, and patient characteristics. FINDINGS: Out of 139 patients, 122 agreed to participate (32 heart, 30 lung, 30 liver, and 30 kidney Tx patients; participation rate: 88%). Most patients were male (57.4%), married or living together (68%), and had a mean age of 55.9 ± 13.4 years. Only 27.9% of Tx patients possessed a smartphone, yet 72.1% owned at least one desktop or laptop PC with wireless Internet at home. On a 10-point numeric scale, asking patients whether they think IHT development is important to support them personally in their self-management, patients gave a median score of 7 (25th percentile 5 points; 75th percentile 10 points). Patients who were single or married or living together were more likely to give a higher rating than divorced or widowed patients; patients who completed only secondary education gave a higher rating than higher educated patients; and patients with prior ICT use gave a higher rating than patients without prior ICT use. Tx patients also had clear preferences regarding IHT features, such as automatic data transfer, as much as possible, visual aids (e.g., graphs) over text messages, and personally deciding when to access the IHT. CONCLUSIONS: By investigating Tx patients' possession and use of ICTs, we learned that computers and the Internet, and not smartphones, are the most suitable IHT platforms to deliver self-management interventions for our Tx patients. Moreover, Tx patients generally are open to using IHT, yet patient acceptance variables and their preferences for certain IHT features should be taken into account in the next steps of IHT development. Designers intending to develop or use existing IHTs should never overlook this critical first step in a human-centered design. CLINICAL RELEVANCE: Before considering using eHealth technology in clinical practice, professionals should always check whether patients are familiar with using information and communication technology, and whether they are willing to use technology for health-related purposes.

Evaluating the Usability and Acceptability of Communication Tools Among Older Adults.

Acutely ill patients may have trouble communicating their symptoms and needs verbally. The current study evaluated the usability and acceptability of six commercially available communication tools with older adults in a non-clinical, controlled setting. Participants evaluated various communication boards and communication applications (apps) by using the tools to communicate needs and symptoms in various scenarios. Participants completed a modified technology acceptance questionnaire and selected the tool they perceived as most useful and easy to use. Bivariate analysis was used to compare communication boards and apps. Performance on most tasks was significantly better using communication boards compared to communication apps. However, participants reported that given more time and training, the apps could be used effectively. A feasibility study is needed to determine whether acutely ill older adults can use these communication tools to successfully convey their symptoms and needs in a hospital setting [Journal of Gerontological Nursing, 44(9), 30-39.].

Patterns and correlates of adherence to self-monitoring in lung transplant recipients during the first 12 months after discharge from transplant.

Self-monitoring of lung function, vital signs, and symptoms is crucial for lung transplant recipients (LTRs) to ensure early detection of complications and prompt intervention. This study sought to identify patterns and correlates of adherence to self-monitoring among LTRs over the first 12 months post-discharge from transplant. This study analyzed existing data from the usual care arm participants of a randomized clinical trial who tracked self-monitoring activities using paper-and-pencil logs. Adherence was calculated as the percent of days LTRs recorded any self-monitoring data per interval: hospital discharge-2 months, 3-6 months, and 7-12 months. The sample (N=91) was mostly white (87.9%), male (61.5%), with a mean age of 57.2±13.8 years. Group-based trajectory analyses revealed two groups: (i) moderately adherent with slow decline (n=29, 31.9%) and (ii) persistently nonadherent (n=62, 68.1%). Multivariate binary logistic regression revealed the following baseline factors increased the risk in the persistently nonadherent group: female (P=.035), higher anxiety (P=.008), and weaker sense of personal control over health (P=.005). Poorer physical health over 12 months were associated with increased risk in the persistently nonadherent group (P=.004). This study highlighted several modifiable factors for future interventions to target, including reducing post-transplant anxiety, and strengthening sense of personal control over health in LTRs.

Patient Portals as a Tool for Health Care Engagement: A Mixed-Method Study of Older Adults With Varying Levels of Health Literacy and Prior Patient Portal Use.

BACKGROUND: Growing evidence that patient engagement improves health outcomes and reduces health care costs has fueled health providers' focus on patient portals as the primary access point for personal health information and patient-provider communication. Whereas much attention has been given to identifying characteristics of older adults who do and do not adopt patient portals and necessary adaptions to portal design, little is known about their attitudes and perceptions regarding patient portal use as a tool for engagement in their health care within the context of health literacy, experience navigating Web-based health information, and previous patient portal use. OBJECTIVE: The specific aims of this study were to explore attitudes toward portal adoption and its perceived usefulness as a tool for health care engagement among adults (65 years and older) who have varying levels of health literacy and degrees of prior patient portal use. METHODS: A phone survey of 100 community dwelling adults gathered sociodemographic, health, and technology related information. Older adults were purposefully selected for 4 follow-up focus groups based on survey responses to health literacy and previous patient portal use. A mixed-method approach was used to integrate phone survey data with thematic analysis of 4 focus groups. Due to variability in attitudes between focus group participants, an individual case analysis was performed and thematic patterns were used as the basis for subgroup formation. RESULTS: Differences in health literacy, comfort navigating health information on the Web, and previous portal experience explained some but not all differences related to the 7 themes that emerged in the focus groups analysis. Individual cases who shared attitudes were arranged into 5 subgroups from least to most able and willing to engage in health care via a patient portal. The subgroups' overall portal adoption attitudes were: (1) Don't want to feel pushed into anything, (2) Will only adopt if required, (3) Somebody needs to help me, (4) See general convenience of the portal for simple tasks and medical history, but prefer human contact for questions, and (5) Appreciates current features and excited about new possibilities . CONCLUSIONS: Most of the older adults are interested in using a patient portal regardless of health literacy level, previous patient portal adoption, or experience navigating health information on the Web. Research targeting informal caregivers of older adults who are unable or unwilling to engage with information technology in health care on their own is warranted. Health care organizations should consider tailored strategies to meet the needs of older adults (and their informal caregivers) and explore alternative workflows that integrate patient portal information into phone conversations and face-to-face contact with health care providers.

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.

A SMART design to optimize treatment strategies for patient and family caregiver outcomes.

Sequential multiple randomization trial (SMART) designs are experimental designs used to identify treatment strategies that maximize targeted health outcomes. SMART designs are receiving greater attention in nursing and other health disciplines to develop multicomponent interventions that are tailored to the patient's (or family caregiver's) needs and preferences. A SMART design resembles a traditional randomized controlled trial (RCT) design in that it scientifically examines intervention effects with randomization. However, the two designs address very different research inquiries. In this article, we compare traditional RCT designs and SMART designs, describe the adaptive treatment framework that underlies SMART designs and key features of SMART designs, and illustrate the application of a SMART design to develop an adaptive palliative care treatment to improve patient and caregiver outcomes.

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.

Predictors of post-traumatic psychological growth in the late years after lung transplantation.

BACKGROUND: Although lung transplantation improves quality of life, most psychosocial research focuses on adverse psychological and social functioning outcomes. Positive effects, particularly in the late-term years as physical morbidities increase, have received little attention. We provide the first data on a psychological benefit - post-traumatic growth (PTG) - and we focused on long-term (>5 yr) survivors. METHODS: Among 178 patients from a prospective study of mental health during the first two yr post-transplant, we recontacted survivors 6-11 yr post-transplant. We assessed PTG (i.e., positive psychological change resulting from the transplant) and examined its relationship to other patient characteristics with multivariable regression analyses. RESULTS: Sixty-four patients (86% of survivors) were assessed (M = 8.1 yr post-transplant, SD = 1.2). Mean PTG exceeded the scale's midpoint (M = 38.6, SD = 10.0; scale midpoint = 25). Recipients experiencing greater PTG were female (p = 0.022), less educated (p = 0.014), and had a history of post-transplant panic disorder (p = 0.005), greater friend support (p = 0.048), and better perceived health (p = 0.032). Neither other pre- or post-transplant mood and anxiety disorders nor transplant-related morbidities (acute rejection, bronchiolitis obliterans syndrome) predicted PTG. CONCLUSIONS: PTG exceeded levels observed in other chronic disease populations, suggesting that lung transplantation may uniquely foster positive psychological change in long-term survivors. PTG occurs despite physical and psychiatric morbidities. Whether PTG promotes other positive post-transplant psychosocial outcomes deserves attention.

Envisioning the future in symptom science.

Symptom assessment and management continues to be a priority issue for nursing science and practice. However, as the complexity of symptom etiology and expression becomes clear, new approaches and technologies are needed to better address biology and context, common data sources need to be built and shared, and addressing the impact of empirical findings on health policy becomes essential. In this article, we provide a forum to reflect on the future direction of symptom science, with the goal of stimulating further dialogue and improving outcomes for patients and families around the world and for years to come.

Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach.

BACKGROUND: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. OBJECTIVE: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework's ability to describe and categorize engagement using Nurse WRITE as an example. METHODS: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures-total count of socio-affective engagement classes (eg, sharing personal experience) and total word count-and 2 cognitive engagement measures-total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data-the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. RESULTS: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses' queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. CONCLUSIONS: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants' engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy.

Developing a Comprehensive List of Criteria to Evaluate the Characteristics and Quality of eHealth Smartphone Apps: Systematic Review.

BACKGROUND: The field of eHealth is growing rapidly and chaotically. Health care professionals need guidance on reviewing and assessing health-related smartphone apps to propose appropriate ones to their patients. However, to date, no framework or evaluation tool fulfills this purpose. OBJECTIVE: Before developing a tool to help health care professionals assess and recommend apps to their patients, we aimed to create an overview of published criteria to describe and evaluate health apps. METHODS: We conducted a systematic review to identify existing criteria for eHealth smartphone app evaluation. Relevant databases and trial registers were queried for articles. Articles were included that (1) described tools, guidelines, dimensions, or criteria to evaluate apps, (2) were available in full text, and (3) were written in English, French, German, Italian, Portuguese, or Spanish. We proposed a conceptual framework for app evaluation based on the dimensions reported in the selected articles. This was revised iteratively in discussion rounds with international stakeholders. The conceptual framework was used to synthesize the reported evaluation criteria. The list of criteria was discussed and refined by the research team. RESULTS: Screening of 1258 articles yielded 128 (10.17%) that met the inclusion criteria. Of these 128 articles, 30 (23.4%) reported the use of self-developed criteria and described their development processes incompletely. Although 43 evaluation instruments were used only once, 6 were used in multiple studies. Most articles (83/128, 64.8%) did not report following theoretical guidelines; those that did noted 37 theoretical frameworks. On the basis of the selected articles, we proposed a conceptual framework to explore 6 app evaluation dimensions: context, stakeholder involvement, features and requirements, development processes, implementation, and evaluation. After standardizing the definitions, we identified 205 distinct criteria. Through consensus, the research team relabeled 12 of these and added 11 more-mainly related to ethical, legal, and social aspects-resulting in 216 evaluation criteria. No criteria had to be moved between dimensions. CONCLUSIONS: This study provides a comprehensive overview of criteria currently used in clinical practice to describe and evaluate apps. This is necessary as no reviewed criteria sets were inclusive, and none included consistent definitions and terminology. Although the resulting overview is impractical for use in clinical practice in its current form, it confirms the need to craft it into a purpose-built, theory-driven tool. Therefore, in a subsequent step, based on our current criteria set, we plan to construct an app evaluation tool with 2 parts: a short section (including 1-3 questions/dimension) to quickly disqualify clearly unsuitable apps and a longer one to investigate more likely candidates in closer detail. We will use a Delphi consensus-building process and develop a user manual to prepare for this undertaking. TRIAL REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews CRD42021227064; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021227064.

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.

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.

Adaptive functioning and its correlates after intestine and liver transplantation.

In this cross-sectional study, we compared levels of adaptive functioning and examined potential correlates of adaptive functioning in 18 pediatric intestine (ITX) and 22 liver (LTX) recipients transplanted between June 2003 and March 2009. Family caregivers completed the ABAS-II scale and provided socio-demographic information regarding recipients' age at transplantation, gender, ethnicity, time since transplantation, and caregivers' role, ethnicity, education, and family income. Overall adaptive functioning and all three adaptive functioning subdomain scores were significantly lower in ITX patients compared with LTX patients (p ≤ 0.04) and compared with the general population normative mean (p ≤ 0.003). Significant correlates of adaptive functioning after abdominal transplant included type of transplant procedure (r = -0.4, p = 0.02), gender (r = 0.4, p = 0.01), and educational level of caregiver (r = 0.5, p = 0.003) and together explained 45% of the variance in overall adaptive functioning. Findings provide new information regarding everyday functioning outcomes of ITX patients, add to existing data regarding non-medical outcomes for LTX patients, and highlight the need for ongoing monitoring and intervention following transplantation to enhance outcomes.