Ambulatory assessment in neuropsychology : applications in multiple sclerosis research

Peer reviewedPostprin

Feel My Pain: Design and Evaluation of Painpad, a Tangible Device for Supporting Inpatient Self-Logging of Pain

Monitoring patients' pain is a critical issue for clinical caregivers, particularly among staff responsible for providing analgesic relief. However, collecting regularly scheduled pain readings from patients can be difficult and time-consuming for clinicians. In this paper we present Painpad, a tangible device that was developed to allow patients to engage in self-logging of their pain. We report findings from two hospital-based field studies in which Painpad was deployed to a total of 78 inpatients recovering from ambulatory surgery. We find that Painpad results in improved frequency and compliance with pain logging, and that self-logged scores may be more faithful to patients' experienced pain than corresponding scores reported to nurses. We also show that older adults may prefer tangible interfaces over tablet-based alternatives for reporting their pain, and we contribute design lessons for pain logging devices intended for use in hospital settings

“A Switch Went off in my Whole Body”: Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid

The growing HCI agenda on health has focused on different chronic conditions but less so on Long Covid, despite its severe impact on the quality of life. We report findings from 2 workshops with 13 people living with Long Covid, indicating the challenges of making sense of their physical, cognitive, and emotional symptoms, and of monitoring the triggers of post-exertional malaise. While most participants engage in pacing activities for the self-management of fatigue, only a few are aware of the importance of planning all their daily activities and routines in order to avoid post-exertional malaise. We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise

Description of Self-Regulation in Health Behavior Change Using Ecological Momentary Assessments

Despite the known associations between unhealthy behaviors and disease, reduced quality of life, and morbidity, individuals struggle to initiate and maintain health behavior change. Self-regulation is a process that includes activities in which people engage to achieve a goal. Poor self-regulation (i.e., inability to set specific, achievable goals; impaired planning skills; limited emotional control) may contribute to unhealthy behaviors across the lifespan. Self-regulation as a concept is inconsistently applied and inadequately understood. The purpose of this secondary analysis of Ecological Momentary Assessment (EMA) data was to develop an in-depth description of self-regulation, as conceptualized in Ryan’s Integrated Theory of Health Behavior Change (2009), during the first three months of a behavior change intervention promoting osteoporosis prevention. Participants were 95 healthy women, ages 40 to 60, with no previous diagnosis of osteoporosis, who received a theory-based, individually-tailored intervention delivered via a smartphone app promoting health behavior change in four areas: calcium intake, physical activity, strength, and balance. The EMAs (each consisting of two questions) provided real-time, ecologically valid measurements of participants self-reported engagement in the osteoporosis preventions areas and, which self-regulation activities were performed. A total of 13,310 EMAs were completed during the 12 weeks. Calcium intake was reported most frequently during this period (n = 7368; 55.4% of all EMAs), followed by physical activity (n = 6038; 45.4% of all EMAs). Goal-setting (self-regulation activity), planning (self-regulation activity), and self-management behaviors (proximal outcome) were the most frequently reported activities across all four prevention areas. The self-regulation activity of tracking was reported at higher frequencies for calcium and physical activity than for balance or strength. For balance and strength, participants were more likely to report engaging in the self-regulation activity of self-evaluation. Findings suggest that participants do not equally pursue multiple prevention areas simultaneously nor do they equally utilize multiple, self-regulation activities. This study’s description of an imperfectly understood concept, frequently incorporated in self-management and health behavior change interventions, suggests that theoretical assumptions of how people pursue change does not coincide with their real-world treatment of the behavior change process. Future research would include self-regulation activity use among different populations with different health risks and conditions. Policy and practice should consider piloting programs that include, at minimum, the self-regulation activities of goal-setting and planning as vital to any health behavior change skillset presented to patients or the public

Efficacy of Osteoporosis Prevention Smartphone App

Background The Striving to be Strong study tested the efficacy of a multifaceted, theory-based, complex osteoporosis prevention smartphone application (app). We hypothesized use of the app would improve bone mineral density and trabecular bone scores. Methods The study was a three-group, prospective, repeated-measure, longitudinal randomized trial. Baseline sample consisted of 290 healthy women between 40 and 60 years of age. Participants were randomly assigned to one of three groups: “Striving,” a dynamically tailored, person-centered app; “Boning Up,” a standardized osteoporosis-education e-book; and “Wait List,” a participant’s choice of intervention in the final 3 months of the 12-month study. Participants had or were provided a smart phone. Bone mineral density and trabecular bone scores were measured using dual-energy X-ray absorptiometry at baseline and 12 months. To assess engagement in health behavior change processes, ecological momentary assessments were administered via text messaging during the 12 months participants actively used the app. Results The final sample reflects an 89.6% retention rate. There were decreases in bone mineral density over time but not among the three groups. The percentage of bone density lost over 12 months was lower than expected. Trabecular bone scores were not different over time or by group but improved across all three groups. Discussion Small but positive results were observed across all groups, suggesting one or more aspects of participation might have affected outcomes, including dissemination of the intervention across groups, retention without participation, ecological momentary assessments functioning as both an intervention and measure, and selective engagement in research-based recommendations

Mindfulness meditation in the treatment of substance use disorders and preventing future relapse: neurocognitive mechanisms and clinical implications

Substance use disorders (SUDs) are a pervasive public health problem with deleterious consequences for individuals, families, and society. Furthermore, SUD intervention is complicated by the continuous possibility of relapse. Despite decades of research, SUD relapse rates remain high, underscoring the need for more effective treatments. Scientific findings indicate that SUDs are driven by dysregulation of neural processes underlying reward learning and executive functioning. Emerging evidence suggests that mindfulness training can target these neurocognitive mechanisms to produce significant therapeutic effects on SUDs and prevent relapse. The purpose of this manuscript is to review the cognitive, affective, and neural mechanisms underlying the effects of mindfulness-based interventions (MBIs) on SUDs. We discuss the etiology of addiction and neurocognitive processes related to the development and maintenance of SUDs. We then explore evidence supporting use of MBIs for intervening in SUDs and preventing relapse. Finally, we provide clinical recommendations about how these therapeutic mechanisms might be applied to intervening in SUDs and preventing relapse.National Institute of Health (NIH) award to ELG (R01DA042033

Flexible and Mindful Self-Tracking: Design Implications from Paper Bullet Journals

Digital self-tracking technologies offer many potential benefits over self-tracking with paper notebooks. However, they are often too rigid to support people’s practical and emotional needs in everyday settings. To inform the design of more flexible self-tracking tools, we examine bullet journaling: an analogue and customisable approach for logging and reflecting on everyday life. Analysing a corpus of paper bullet journal photos and related conversations on Instagram, we found that individuals extended and adapted bullet journaling systems to their changing practical and emotional needs through: (1) creating and combining personally meaningful visualisations of different types of trackers, such as habit, mood, and symptom trackers; (2) engaging in mindful reflective thinking through design practices and self-reflective strategies; and (3) posting photos of paper journals online to become part of a selftracking culture of sharing and learning. We outline two interrelated design directions for flexible and mindful selftracking: digitally extending analogue self-tracking and supporting digital self-tracking as a mindful design practice