Text2Breathe: Text-Message Intervention for Parent Communication and Pediatric Asthma.

OBJECTIVE: Mobile health technology offers promise for reducing disparities in pediatric asthma care and outcomes by helping parents more effectively communicate with their children's primary care providers and manage their children's asthma. This study tested the impact of a text messaging program on emergency department utilization and asthma morbidity. METHODS: A randomized controlled trial enrolled 221 parents of Medicaid-insured children visiting the emergency departments of 2 urban children's hospitals in the Pacific Northwest for an asthma-related concern between September 2015 and February 2019. Standardized surveys were administered to parents at baseline and 12 months later to assess the primary outcomes of emergency department utilization and morbidity as well as primary care utilization, parent communication self-efficacy, and asthma self-management knowledge. The intervention group received brief in-person education on partnering with primary care providers, followed by 3 months of educational text messages. RESULTS: Participants were mostly female, English speakers, of minority race and ethnicity, and living below 200% of the federal poverty level. Negative binomial and linear regressions indicated no significant group differences in annual number of emergency department visits, morbidity, parent communication self-efficacy, or asthma self-management knowledge at 12 months' follow-up, adjusting for baseline covariates. Average annual rate of primary care visits for asthma was 35% higher in the intervention group compared to control group at follow-up (95% confidence interval 1.03-1.76, P = .03). CONCLUSIONS: This parent-focused text message intervention did not impact emergency department utilization or asthma morbidity; however, results suggest its potential for enhancing use of primary care for management of pediatric chronic conditions.

Mobility with a lower limb prosthesis: experiences of users with high levels of functional ability.

PURPOSE: The Prosthetic Limb Users Survey of Mobility (PLUS-M) is a self-report item bank designed to measure the abilities with which people with lower limb amputation perform physical activities. Although PLUS-M includes items that span a range of mobility, additional items are needed to accurately measure mobility of highly active prosthesis users, such as athletes and service members with lower limb amputation. The aim of this study was to understand mobility in highly active lower limb prosthesis users to inform the development of new items for the PLUS-M item bank. METHODS: Focus groups were conducted with active, lower limb prosthesis users from across the USA. In-person and online focus groups were conducted by a trained facilitator using a semi-structured guide. Focus group transcripts were reviewed and coded by two researchers. Thematic analysis was used to identify important experiences across participants. RESULTS: Twenty-nine participants took part in four focus groups. Three resultant themes were identified: mobility after amputation, mobility characteristics, and healthcare providers and systems. CONCLUSIONS: Identified themes inform clinician and researcher understanding of mobility in highly active lower limb prosthesis users. The results of this study will be used to inform development of high-activity items for the PLUS-M item bank.Implications for rehabilitationParticipants described engagement in high-level activities as a learning process that included elements such as equipment challenges and modifications, pain and injury, and the need to trust the prosthetic limb.Participants with lower limb amputation who use prostheses identified mobility characteristics, such as postural changes, terrain, and obstacles, that influenced their ability to perform high-level activities.High-level mobility characteristics identified in these focus groups can be integrated into a revised version of the Prosthetic Limb Users Survey of Mobility to assess mobility in active adults and athletes with amputation.Rehabilitation professionals play an important role in facilitating access to specialized prosthetic components and training that can help patients achieve their mobility goals and potential.

The Concerns About Pain (CAP) Scale: A Patient-Reported Outcome Measure of Pain Catastrophizing.

Pain catastrophizing has been recognized as an important and consistent psychosocial predictor of nearly every key pain-related outcome. The purpose of this study was to develop a new measure of pain catastrophizing using modern psychometric methodology. People with chronic pain (N = 795) responded to thirty items. Data were analyzed using item response theory, including assessment of differential item functioning and reliability. Sensitivity to change and validity were examined using data collected from patients undergoing spinal fusion surgery (n = 184) and participating in an ongoing longitudinal aging with a disability survey study (n = 1,388). The final 24-item bank had no items with significant local dependence, misfit, or differential item functioning. Results provided strong evidence of reliability and validity. Six- and 2-item short forms were developed for use when computer adaptive testing is not feasible or desirable. The item bank was named the University of Washington Concerns About Pain scale because the term "catastrophizing" was considered stigmatizing by people with chronic pain. Guidance for score interpretation was developed with extensive feedback from individuals with chronic pain. The Concerns About Pain item bank, short forms, and user manuals are free and publicly available to all users and can be accessed online at https://uwcorr.washington.edu/measures/. PERSPECTIVE: This article presents the development of the University of Washington Concerns About Pain scale, the first item response theory-based item bank of pain catastrophizing. The measure is intended for clinicians interested in improving outcomes of patients with chronic pain and for researchers who study impact of and treatment interventions aimed at reducing pain catastrophizing.

Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions.

PURPOSE: To develop item response theory (IRT)-based item banks and short forms to measure stress and benefit related to caregiving for children, including children with epilepsy or other serious health conditions. METHODS: Items developed with feedback from neurologists and caregivers of children with epilepsy were tested in cognitive interviews and administered to caregivers of children with severe epilepsy (N = 128), down syndrome (N = 143) and muscular dystrophy (N = 129), as well as a community sample of US caregivers (N = 322). IRT was used to analyze the data. Test-retest reliability was assessed using a two-way random effects (2,1) intraclass correlation coefficient (ICC). Validity was assessed by a pattern of correlations with relevant constructs (stress, depression, anxiety, and resilience) and by the pattern of scores by known groups. RESULTS: Caregivers of children with serious health conditions reported more stress and less benefit than the general sample. The final caregiver stress item bank (k = 19) and the caregiver benefit item bank (k = 13) were calibrated using IRT and centered on a sample of community caregivers representative of the US general caregiver population. Short form scores are highly correlated with full bank scores (r ≥ 0.98) and IRT reliability exceed 90% for most levels. Test-retest reliability was high (ICC > 0.92) for banks and short forms. CONCLUSIONS: Results provide strong support for reliability and validity of the caregiver stress and benefit scores. Instruments are publicly available, flexible, brief, and provide reliable and valid scores of caregiver stress and benefit of caregivers of children with and without serious health conditions.

Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups.

Severe epilepsy in children and young adults can significantly affect the lives of their caregivers. However, the lack of a reliable and valid measure of caregiver impact has limited our understanding of the scope and correlates of this impact, as well as our ability to measure the effects of treatments that could lessen it. The purpose of this study was to facilitate focus groups and interviews with an international group of clinician experts and caregivers to identify the most important domains that should be assessed in a measure of caregiver impact. Ten specific subdomains emerged from the panel discussions, which could be classified into the four overarching categories of physical health, mental health, social function, and financial resources. The caregivers highlighted the impact on the subdomains of sleep and fatigue as most critical. A review of existing caregiver impact measures confirmed that there is no measure currently available that assesses all of these relevant domains, indicating the need for the development of such a measure. The current findings highlight the significant life effects of caring for a child with severe epilepsy and can be used to inform the development of such a tool.