COVID-19 prompted distress and increased reliance on digital mental health interventions, which previously demonstrated low rates of retention and adherence. This single-arm trial evaluated whether self-guided, web-based, positive affect regulation skills (PARK) were engaging and associated with changes in well-being during the pandemic. Over 6 weeks, PARK delivers brief lessons and practices in skills designed to increase positive emotions: noticing positive events, savoring, gratitude, mindfulness, positive reappraisal, personal strengths, and self-compassion. Patient-Reported Outcome Measurement Information System (PROMIS) computer adaptive tests of anxiety, depression, social isolation, positive affect, and meaning and purpose were administered at baseline, post-intervention, and 6 months after baseline. Retention and usage of PARK were measured by the web-based assessment and intervention platforms. The sample (n = 616) was predominantly female, non-Hispanic, white, and well-educated. Of those who completed baseline, only 42% completed a follow-up assessment; 30% never logged into PARK. Among those who did, 86% used at least one skill, but only 14% completed PARK. Across retention and usage metrics, older age predicted more engagement. In multivariable models, people of color and people with greater baseline anxiety were more likely to complete PARK. All well-being indicators improved over time, with greater improvements in anxiety and social isolation among participants who accessed at least one PARK skill compared to those who did not. Retention and usage rates mirrored pre-pandemic trends, but within this select sample, predictors of engagement differed from prior research. Findings underscore the need for additional efforts to ensure equitable access to digital mental health interventions and research. Trials registration: NCT04367922.
Objective: To better characterize the ways that migraine affects multiple domains of life. Background: Further understanding of migraine burden is needed. Methods: Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach. Results: Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties. Conclusions: Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.
Background Recent advancements in technology provide promising tools for nutrition research and practice. Using mobile phones to record and photograph food prior to consumption can be an effective method for dietary analysis, reducing reliance on self-report and recall. Research continues to focus on refining and creating new methods to evaluate food intake with greater degrees of accuracy. Wearable and portable technologies have seen vast advances in recent years that allow for continuous collection of biometric data which can be integrated into health assessments. This reduces burden while providing more accurate, consistent data for a variety of health measures. The extensive availability and usage of mobile apps for nutrition-based health interventions makes evaluation of the quality of these apps crucial for integration into nutritional management. Objectives/Design MyRareDiet® is a nutrition software and mobile application that can be used in nutrition research and patient dietary management. Accurate dietary information is needed to further understand the link between diet and health outcomes, especially in situations that require close diet management. The use of paper diet diaries and food frequency questionnaires are commonly utilized. However, these tools are frequently inadequate. Novel methods of assessing intake are required to reduce the burden in dietary surveys, improve research participation and thereby improve the representativeness of the sample, while at the same time minimizing the impact of measuring dietary intake. MyRareDiet® has three subsystems: Patient Portal, Researcher Portal, and Clinician Portal. The primary goal of the Patient and Clinical Portals is to enable patients and caregivers to easily track and monitor their own diet so they can meet their strict diet targets and restrictions, while enabling adherence and compliance. The Researcher Portal facilitates collection, study and analysis of diet-based data. MyRareDiet® has an extensive food database, which has been validated at multiple moments in the development process. Usability studies have been conducted to make sure that the program is easily navigated and meets user and clinician needs. The dietary analysis of the program has been validated against 3-day diet records. Conclusion We developed and validated a mobile app called MyRareDiet®, which is intended to document nutrition intake, facilitate data collection, reduce study burden for families and clinicians, and in the future connect this information with patient health outcomes. MyRareDiet® is designed to address a significant unmet need in nutrition research, and to assist with dietary management designed to increase adherence and compliance that leads to improved outcomes.
Background: This manuscript describes the first two phases of pilot testing MARIGOLD, an online self-guided positive emotion skills intervention for adults with elevated depressive symptoms, along with enhancements to overcome retention and adherence problems reported in previous research. Methods: Adults with elevated depressive symptoms were recruited online and assessed at baseline, post-intervention, 1- and 3-month follow-up. Phase 1 participants (n = 58) were randomized to MARIGOLD, daily emotion reporting, or waitlist. Phase 2 participants (n = 79) were randomized to MARIGOLD plus one enhancement: online discussion board (ODB), virtual badges (VB), or facilitator contact (FC). Post-intervention interviews assessed acceptability. Intention-to-treat analyses examined retention, adherence, and preliminary efficacy. Results: In both phases, retention and adherence did not differ between groups. MARIGOLD skills were highly acceptable, but qualitative results indicate web-based features (e.g., log-in, ODB, VB) require refinement prior to larger testing. Neither phase demonstrated between-group differences in preliminary efficacy. In Phase 1 within-group analyses, MARIGOLD and emotion reporting control demonstrated a similar pattern of findings (stable depressive symptoms, increased positive emotion, decreased negative emotion and stress), whereas the waitlist group significantly increased in depressive mood. Most Phase 2 within-group analyses demonstrated the expected pattern of results (i.e., decreases in PHQ-8 and negative emotion, increases in positive emotion). However, CES-D scores were stable in FC; perceived stress was stable in FC and ODB. Limitations: This pilot study is not powered to evaluate efficacy. Conclusion: Positive emotion skills, plus enhancements for web-based, self-guided delivery, warrant additional study in people with elevated depressive symptoms.
152 Background: An eHealth prototype was developed to embody the principals of Patient-Centered Communication espoused by National Cancer Insitute (NCI). The prototype provides patients with features that support access to their “care” (medical records, symptom reporting and monitoring tools, calendar, treatment schedule), “team” (bio, roles, contact info for care team), “education” (reputable articles, videos, tools), and “community” (local classes, events, support groups, forums). This prototype was evaluated in terms of its usefulness and usability. Methods: The prototype was evaluated through two usability evaluation sessions. 13 cancer patients, 4 caregivers, and 12 cancer health care providers were recruited. During a 30-45 minute session, each subject viewed the prototype and completed a survey about the prototype’s usability and usefulness. The survey included 29 items with Likert scales ranging from 0 (Strongly Disagree) to 4 (Strongly Agree). Descriptive statistics were generated. Results: The results were categorized according to group (patient, caregiver, and provider) and section of prototype (overall, care, team, community, education). The patients rated the prototype higher in terms usefulness and usability across all user groups/sections except for the education section, which was rated highest by providers (Table). Conclusions: The positive feedback on several aspects of the prototype from different user groups indicates that our prototype met our objectives of being useful, easy-to-use, and adding value to the cancer patient’s care journey. Interestingly, there is a difference in the perceived value of the prototype’s different sections among each user group. The patients placed higher value on the “Care” features (medical records, symptom reporting and monitoring tools, and treatment schedule) and “Team” features (bio, roles, contact info for care team) than providers, and caregivers. Whereas providers most valued education content as opposed to patients and caregivers who ranked the team content as most important. [Table: see text]
This project sought to help palliative and hospice care practices improve patient care quality and operational efficiency by improving patient symptom status reporting and symptom management, reducing associated provider documentation workload, and enhancing patient-provider and provider-provider communication. We developed a user-friendly, electronic medical record-compatible, software prototype that allows typical clinical data and patient-reported outcomes (PRO) to be entered and stored. This data is immediately available during the clinical encounter with graphically depicted summaries for patient history and PRO assessments, a trending feature that links symptom behavior to interventions and the Edmonton Labeled Visual Information System. A user-centered design approach allowed for iterative cycles of needs/usability feedback from providers and patients/caregivers to be incorporated into the development of our prototype's technical structure and features. To determine the needs and initial usability of the project's prototype, we interviewed eight providers and 18 patients/caregivers. Another usability test, consisting of patient/caregiver (n = 18) and provider (n = 9) interviews, assessed the functioning prototype's design, usability, and usefulness. Patients/caregivers (n = 18) reported that the prototype was usable (100%), it would facilitate patient-provider communication, shared decision making, and self-management (100%), and they would be willing to try the system and recommend it to their providers (100%). The providers (n = 9) felt that the prototype encouraged better use of patient assessments in decision making and patient care (100%) and improved identification of cause/temporal relationship between care events and outcomes (100%), monitoring of patient status (100%), communication in a multi-disciplinary team (100%), and operational efficiency and patient care quality (88.9%). Quality of patient care and operational efficiency can be improved with an effective assessment, evaluation, and communication tool. This project developed an electronic version of such a tool. Future efforts will hone its usability and integration across multiple hospice/palliative care settings.
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