Development and validation of the Dimensional Inventory of Stress and Trauma Across the Lifespan (DISTAL): A novel assessment tool to facilitate the dimensional study of psychobiological sequelae of exposure to adversity.

Decades of research underscore the profound impact of adversity on brain and behavioral development. Recent theoretical models have highlighted the importance of considering specific features of adversity that may have dissociable effects at distinct developmental timepoints. However, existing measures do not query these dimensions in sufficient detail to support the proliferation of this approach. The Dimensional Inventory of Stress and Trauma Across the Lifespan (DISTAL) was developed with the aim to thoroughly and retrospectively assess the timing, severity (of exposure and reaction), type, persons involved, controllability, predictability, threat, deprivation, proximity, betrayal, and discrimination inherent in an individual's exposure to adversity. Here, we introduce this instrument, present descriptive statistics drawn from a sample of N = 187 adults who completed the DISTAL, and provide initial information about its psychometric properties. This novel measure facilitates the expansion of research focused on assessing the relative impact of exposure to key dimensions of adversity on the brain and behavior across development.

Home visits for uncontrolled asthma among low-income adults with patient portal access.

BACKGROUND: Asthma disproportionately affects low-income and minority adults. In an era of electronic records and Internet-based digital devices, it is unknown whether portals for patient-provider communication can improve asthma outcomes. OBJECTIVE: We sought to estimate the effect on asthma outcomes of an intervention using home visits (HVs) by community health workers (CHWs) plus training in patient portals compared with usual care and portal training only. METHODS: Three hundred one predominantly African American and Hispanic/Latino adults with uncontrolled asthma were recruited from primary care and asthma specialty practices serving low-income urban neighborhoods, directed to Internet access, and given portal training. Half were randomized to HVs over 6 months by CHWs to facilitate competency in portal use and promote care coordination. RESULTS: One hundred seventy (56%) patients used the portal independently. Rates of portal activity did not differ between randomized groups. Asthma control and asthma-related quality of life improved in both groups over 1 year. Differences in improvements over time were greater for the HV group for all outcomes but reached conventional levels of statistical significance only for the yearly hospitalization rate (-0.53; 95% CI, -1.08 to -0.024). Poor neighborhoods and living conditions plus limited Internet access were barriers for patients to complete the protocol and for CHWs to make HVs. CONCLUSION: For low-income adults with uncontrolled asthma, portal access and CHWs produced small incremental benefits. HVs with emphasis on self-management education might be necessary to facilitate patient-clinician communication and to improve asthma outcomes.

Filling the patient-provider knowledge gap: a patient advocate to address asthma care and self-management barriers.

Introduction: In an ongoing study, a new clinical role adapted from a patient navigator called the patient advocate (PA) met with patients before medical visits, attended appointments and afterwards reviewed provider instructions. This qualitative analysis examines the perspectives of PAs and providers regarding their experiences with patients to understand how a PA can help patients and providers achieve better asthma control. Methods: PAs recorded journal entries about their experiences with patients. Provider focus groups and interviews were conducted by researchers and transcribed. Analysis was based on the Grounded Theory approach for qualitative research, using open and then focused coding. Two researchers independently coded these sources until intercoder agreement was achieved. Results: Upon review of 31 journal entries on PA experiences with 24 patients and transcripts from 2 provider focus groups and 12 provider interviews, 5 themes emerged surrounding asthma care and self-management: medication adherence, follow-up, communication, social determinants of health and time. While patients shared with PAs specific socioeconomic barriers to medication adherence and follow-up, providers often did not know about these problems and cited barriers to communication. Time restrictions on medical visits further limited communication. Conclusions: Perspectives reported here illustrate a gap in knowledge and understanding between patients and providers. The PA's unique relationship with patients and presence inside and outside of medical visits allowed them to learn contextual patient information unknown to providers. PAs and providers cited numerous ways PAs can help to improve patient-provider mutual understanding.

Home visits are needed to address asthma health disparities in adults.

Research on asthma frequently recruits patients from clinics because the ready pool of patients leads to easy access to patients in office waiting areas, emergency departments, or hospital wards. Patients with other chronic conditions, and with mobility problems, face exposures at home that are not easily identified at the clinic. In this article, we describe the perspective of the community health workers and the challenges they encountered when making home visits while implementing a research intervention in a cohort of low-income, minority patients. From their observations, poor housing, often the result of poverty and lack of social resources, is the real elephant in the chronic asthma room. To achieve a goal of reduced asthma morbidity and mortality will require a first-hand understanding of the real-world social and economic barriers to optimal asthma management and the solutions to those barriers.

A health care navigation tool assesses asthma self-management and health literacy.

BACKGROUND: Self-management of moderate-to-severe asthma depends on the patient's ability to (1) navigate (access health care to obtain diagnoses and treatment), (2) use inhaled corticosteroids (ICSs) properly, and (3) understand ICS function. OBJECTIVE: We sought to test whether navigation skills (medication recall, knowledge of copay requirements, and ability to provide information needed for a medical visit about a persistent cough unresponsive to medication) are related to other self-management skills and health literacy. METHODS: A 21-item Navigating Ability (NAV2) questionnaire was developed, validated, and then read to adults with moderate-to-severe asthma. ICS technique was evaluated by using scales derived from instructions in national guidelines; knowledge of ICS function was evaluated by using a validated 10-item questionnaire. Spearman correlation was computed between NAV2 score and these questionnaires and with numeracy (Asthma Numeracy Questionnaire) and print literacy (Short Test of Functional Health Literacy in Adults). RESULTS: Two hundred fifty adults participated: age, 51 ± 13 years; 72% female; 65% African American; 10% Latino; 50% with household income of less than $30,000/y; 47% with no more than a 12th-grade education; and 29% experienced hospitalizations for asthma in the prior year. A higher NAV2 score was associated with correct ICS technique (ρ = 0.24, P = .0002), knowledge of ICSs (ρ = 0.35, P < .001), better print literacy (ρ = 0.44, P < .001), and numeracy (ρ = 0.41, P < .001). CONCLUSIONS: Patients with poor navigational ability are likely to have poor inhaler technique and limited understanding of ICS function, as well as limited numeracy and print literacy. Clinicians should consider these elements of self-management for their effect on asthma care and as a marker of more general health literacy deficits.

Development and Validation of the Parental Assistance with Child Emotion Regulation (PACER) Questionnaire.

Caregivers play a central role in promoting emotion regulation throughout infancy, childhood, and adolescence. However, there are no existing psychometric measures to assess how parents assist children in employing emotion regulation strategies for negative emotions. We therefore developed the Parental Assistance with Child Emotion Regulation (PACER) Questionnaire to assess the degree to which parents assist their children in their use of ten different regulation strategies. In this paper, we describe the development of the PACER and examine its psychometric properties (N = 407 parents of children ages birth to 17 years). In so doing, we also use the PACER to comprehensively explore the links between parent-assisted emotion regulation and indices of parent and child stress, symptomatology, and attachment. Confirmatory factor analyses of the PACER items supported its intended ten-factor structure (corresponding to ten specific regulation strategies), which was invariant across different child age and sex categories. PACER scale scores had excellent internal consistency and generally acceptable test-retest reliability over a one-week period. Convergent validity was established via correlations between PACER scales and indices of parental emotion sensitivity, expressivity, and regulation, as well as parents' perception of the efficacy of their assistance with children's execution of emotion regulatory strategies. Lower parental facilitation of stereotypically adaptive emotion regulatory strategies was associated with higher child internalizing and externalizing problems and with poorer parent-child relationship quality. Overall, these findings suggest that the PACER may be a useful tool for the assessment of parental assistance with child emotion regulation across development.

Patient Portal Usage and Outcomes Among Adult Patients with Uncontrolled Asthma.

BACKGROUND: Patient-clinician communication, essential for favorable asthma outcomes, increasingly relies on information technology including the electronic heath record-based patient portal. For patients with chronic disease living in low-income neighborhoods, the benefits of portal communication remain unclear. OBJECTIVE: To describe portal activities and association with 12-month outcomes among low-income patients with asthma formally trained in portal use. METHODS: In a longitudinal observational study within a randomized controlled trial, 301 adults with uncontrolled asthma were taught 7 portal tasks: reviewing upcoming appointments, scheduling appointments, reviewing medications, locating laboratory results, locating immunization records, requesting refills, and messaging. Half the patients were randomized to receive up to 4 home visits by community health workers. Patients' portal use by activities, rate of usage over time, frequency of appointments with asthma physicians, and asthma control and quality of life were assessed over time and estimated as of 12 months from randomization. RESULTS: Fewer than 60% of patients used the portal independently. Among users, more than half used less than 1 episode per calendar quarter. The most frequent activities were reading messages and viewing laboratory results and least sending messages and making appointments. Higher rates of portal use were not associated with keeping regular appointments during follow-up, better asthma control, or higher quality of life at 12-month postintervention. CONCLUSIONS: Patients with uncontrolled asthma used the portal irregularly if at all, despite in-person training. Usage was not associated with regular appointments or with clinical outcomes. Patient portals need modification to accommodate low-income patients with uncontrolled asthma.

Patient Advocates for Low-Income Adults with Moderate to Severe Asthma: A Randomized Clinical Trial.

BACKGROUND: Few interventions have targeted low-income adults with moderate to severe asthma despite their high mortality. OBJECTIVE: To assess whether a patient advocate (PA) intervention improves asthma outcomes over usual care (UC). METHODS: This 2-armed randomized clinical trial recruited adults with moderate to severe asthma from primary care and asthma-specialty practices serving low-income neighborhoods. Patients were randomized to 6 months of a PA intervention or UC. PAs were recent college graduates anticipating health care careers, who coached, modeled, and assisted participants with preparations for asthma-related medical visits, attended visits, and confirmed participants' understanding of provider recommendations. Participants were followed for at least a year for patient-centered asthma outcomes: asthma control (primary outcome), quality of life, prednisone requirements, emergency department visits, and hospitalizations. RESULTS: There were 312 participants. Their mean age was 51 years (range, 19-93 years), 69% were women, 66% African American, 8% Hispanic/Latino, 62% reported hospitalization for asthma in the year before randomization, 21% had diabetes, and 61% had a body mass index of 30 or more. Asthma control improved over 12 months, more in the intervention group (-0.45 [95% CI, -0.67 to -0.21]) than in the UC group (-0.26 [95% CI, -0.53 to -0.01]), and was sustained at 24 months but with no statistical difference between groups. The 6-month rate of emergency department visits decreased in the intervention (-0.90 [95% CI, -1.56 to -0.42]) and UC (-0.42 [95% CI, -0.72 to -0.06]) groups over 12 months. The cost of the PA program was $1521 per patient. Only 64% of those assigned had a PA visit. CONCLUSIONS: A PA may be a promising intervention to improve and sustain outcomes in this high-risk population if expanded to address factors that make keeping appointments difficult.

Exploring Patient Engagement: A Qualitative Analysis of Low-Income Urban Participants in Asthma Research.

BACKGROUND: Uncontrolled asthma is a common highly morbid condition with worse outcomes in low-income and minority patients in part due to barriers accessing and engaging with health care. We developed a patient advocate to educate about and assist with navigating access to care and provider-patient communication. Participants completed an End of Study Questionnaire (ESQ) that was analyzed to assess experience and engagement with the protocol. OBJECTIVE: This study uses qualitative analysis to evaluate participant experience with the patient advocate and control group interventions. METHODS: The ESQ aimed to prompt an open-ended discussion of study experience. Questions were developed from patient focus groups about the patient advocate intervention (PAI), and were revised based on early responses. The questionnaire was administered after 12 months of study participation: 6 months of control or PAI, followed by 6 months of follow-up. Answers were evaluated using qualitative coding and a grounded theory analytical approach. RESULTS: A total of 102 low-income and minority adults with moderate or severe asthma who had completed the study protocol at the time of publication (approximately one-third of total participants) found PAI and control group activities acceptable. Four themes emerged from both groups: (1) appreciation of interpersonal and educational interaction, (2) perception of improved health care adherence, (3) preparedness for physician appointments, (4) improved patient-provider communication. Attention from study personnel and review of asthma-related information was unanimously well received and empowered patients' active health care participation. CONCLUSIONS: Patient engagement and empowerment were elicited by perceived education and personal attention. This study suggests a low-resource, feasible method to improve patient engagement.

A patient advocate to facilitate access and improve communication, care, and outcomes in adults with moderate or severe asthma: Rationale, design, and methods of a randomized controlled trial.

Few interventions to improve asthma outcomes have targeted low-income minority adults. Even fewer have focused on the real-world practice where care is delivered. We adapted a patient navigator, here called a Patient Advocate (PA), a term preferred by patients, to facilitate and maintain access to chronic care for adults with moderate or severe asthma and prevalent co-morbidities recruited from clinics serving low-income urban neighborhoods. We describe the planning, design, methodology (informed by patient and provider focus groups), baseline results, and challenges of an ongoing randomized controlled trial of 312 adults of a PA intervention implemented in a variety of practices. The PA coaches, models, and assists participants with preparations for a visit with the asthma clinician; attends the visit with permission of participant and provider; and confirms participants' understanding of what transpired at the visit. The PA facilitates scheduling, obtaining insurance coverage, overcoming patients' unique social and administrative barriers to carrying out medical advice and transfer of information between providers and patients. PA activities are individualized, take account of comorbidities, and are generalizable to other chronic diseases. PAs are recent college graduates interested in health-related careers, research experience, working with patients, and generally have the same race/ethnicity distribution as potential participants. We test whether the PA intervention, compared to usual care, is associated with improved and sustained asthma control and other asthma outcomes (prednisone bursts, ED visits, hospitalizations, quality of life, FEV1) relative to baseline. Mediators and moderators of the PA-asthma outcome relationship are examined along with the intervention's cost-effectiveness.

The use of participatory action research to design a patient-centered community health worker care transitions intervention.

BACKGROUND: Policymakers, patients and clinicians are increasingly eager to foster patient involvement in health care innovation. Our objective was to use participatory action research with high-risk hospitalized patients to design a post-hospital transition intervention. METHODS: We conducted qualitative interviews with sixty-five low-income, recently hospitalized patients exploring their perceptions of barriers to post-hospital recovery and ideas for improvement. We then used a modified grounded theory approach to design an intervention that would address each barrier using patients׳ suggestions. RESULTS: Five key themes were translated into design elements. First, patients wished to establish a relationship with healthcare personnel to whom they could relate. The intervention was provided by an empathic community health worker (CHW) who established rapport during hospitalization. Second, patients suggested tailoring support to their needs and goals. CHWs and patients designed individualized action plans for achieving their goals for recovery. Third, patient goals were misaligned with those of the inpatient team. CHW facilitated patient-provider discharge communication to align goals. Fourth, patients lacked post-discharge support for predominantly psychosocial or financial issues that undermined recovery. CHWs provided support tailored to patient needs. Finally, patients faced numerous barriers in obtaining post-hospital primary care. CHWs helped patients to obtain timely care with a suitable provider. CONCLUSIONS: Low-income hospitalized patients voiced needs and suggestions that were directly translated into the design of a scalable patient-centered CHW intervention. IMPLICATIONS: The approach of using participatory action research to tightly mapping patient input into intervention design is rapid and systematic strategy for operationalizing patient involvement in innovation.

A primary care intervention for weight loss: results of a randomized controlled pilot study.

Most primary care providers (PCPs), constrained by time and resources, cannot provide intensive behavioral counseling for obesity. This study evaluated the effect of using medical assistants (MAs) as weight loss counselors. The study was a randomized controlled trial conducted in two primary care offices at an academic medical center. Patients (n = 50) had a BMI of 27-50 kg/m(2) and no contraindications to weight loss. They were randomized to quarterly PCP visits and weight loss materials (Control group) or to the same approach combined with eight visits with a MA over 6 months (Brief Counseling). Outcomes included change in weight and cardiovascular risk factors (glucose, lipids, blood pressure, and waist circumference). Patients in the Brief Counseling and Control groups lost 4.4 +/- 0.6 kg (5.1 +/- 0.7% of initial weight) and 0.9 +/- 0.6 kg (1.0 +/- 0.7%), respectively, at month 6 (P < 0.001). There were no significant differences between groups for changes in cardiovascular risk factors. Brief Counseling patients regained weight between month 6 and month 12, when MA visits were discontinued. Attrition was 10% after 6 months and 6% after 12 months. Brief Counseling by MAs induced significant weight loss during 6 months. Office-based obesity treatment should be tested in larger trials and should include weight loss maintenance counseling.