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Objective To evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence. Methods AYAs (n = 60, M age = 15.4 years, SD = 2.7, 40% female, 43% African American/Black) and caregivers (n = 60, 73% female) attended audio-recorded clinic visits with pediatric nephrologists (n = 12, 75% female). Recordings were analyzed using global affect ratings of the Roter Interactional Analysis System. Antihypertensive medication adherence was monitored electronically before and after clinic visits. A linear regression model evaluated associations between affect ratings and post-visit adherence. Results AYAs took 84% of doses (SD = 20%) pre-visit and 82% of doses (SD = 24%) post-visit. Higher AYA engagement (β = 0.03, p = .01) and the absence of provider negative affect (β=-0.15, p = .04) were associated with higher post-visit adherence, controlling for pre-visit adherence, AYA sex, age, and race, and clustered by provider. Conclusions Post-visit adherence was higher when AYAs were rated as more engaged and providers as less negative. Practice Implications AYAs with lower engagement may benefit from further adherence assessment. Communication strategies designed to more actively engage AYAs in their care and diminish provider conveyance of negative affect during clinic visits may positively influence adherence among AYAs with CKD.

Background: Current tobacco treatment guidelines have established the efficacy of available interventions, but they do not provide detailed guidance for common implementation questions frequently faced in the clinic. An evidence-based guideline was created that addresses several pharmacotherapy-initiation questions that routinely confront treatment teams. Methods: Individuals with diverse expertise related to smoking cessation were empaneled to prioritize questions and outcomes important to clinicians. An evidence-synthesis team conducted systematic reviews, which informed recommendations to answer the questions. The GRADE (Grading of Recommendations, Assessment, Development, and Evaluation) approach was used to rate the certainty in the estimated effects and the strength of recommendations. Results: The guideline panel formulated five strong recommendations and two conditional recommendations regarding pharmacotherapy choices. Strong recommendations include using varenicline rather than a nicotine patch, using varenicline rather than bupropion, using varenicline rather than a nicotine patch in adults with a comorbid psychiatric condition, initiating varenicline in adults even if they are unready to quit, and using controller therapy for an extended treatment duration greater than 12 weeks. Conditional recommendations include combining a nicotine patch with varenicline rather than using varenicline alone and using varenicline rather than electronic cigarettes. Conclusions: Seven recommendations are provided, which represent simple practice changes that are likely to increase the effectiveness of tobacco-dependence pharmacotherapy.

The prevalence of burnout and depressive symptoms is high among physician trainees.What is the burden of burnout and depressive symptoms among fellows training in pulmonary and critical care medicine (PCCM) and what are associated individual fellow, program, and institutional characteristics?We conducted a cross-sectional electronic survey of fellows enrolled in pulmonary, PCCM, and critical care medicine training programs in the United States to assess burnout and depressive symptoms. Burnout symptoms were measured using the Maslach Burnout Index two-item measure. The two-item Primary Care Evaluation of Mental Disorders Procedure was used to screen for depressive symptoms. For each of the two outcomes (burnout and depressive symptoms), we constructed three multivariate logistic regression models to assess individual fellow characteristics, program structure, and institutional polices associated with either burnout or depressive symptoms.Five hundred two of the 976 fellows who received the survey completed it-including both outcome measures-giving a response rate of 51%. Fifty percent of fellows showed positive results for either burnout or depressive symptoms, with 41% showing positive results for depressive symptoms, 32% showing positive results for burnout, and 23% showing positive results for both. Reporting a coverage system in the case of personal illness or emergency (adjusted OR [aOR], 0.44; 95% CI, 0.26-0.73) and access to mental health services (aOR, 0.14; 95% CI, 0.04-0.47) were associated with lower odds of burnout. Financial concern was associated with higher odds of depressive symptoms (aOR, 1.13; 95% CI, 1.05-1.22). Working more than 70 hours in an average clinical week and the burdens of electronic health record (EHR) documentation were associated with a higher odds of both burnout and depressive symptoms.Given the high prevalence of burnout and depressive symptoms among fellows training in PCCM, an urgent need exists to identify solutions that address this public health crisis. Strategies such as providing an easily accessible coverage system, access to mental health resources, reducing EHR burden, addressing work hours, and addressing financial concerns among trainees may help to reduce burnout or depressive symptoms and should be studied further by the graduate medical education community.

OBJECTIVE The purpose of this study was to evaluate associations between executive functioning and caregiver adherence monitoring with objective antihypertensive medication adherence over 24 months in adolescents with chronic kidney disease (CKD). METHODS Adolescents (N = 97, 11-20 years old) with CKD taking antihypertensive medication and their caregivers were recruited from three pediatric nephrology clinics. At baseline, adolescents and caregivers reported on adolescents' executive functioning and caregivers reported on their adherence monitoring. Antihypertensive medication adherence was objectively assessed via electronic monitoring at baseline and every 6 months after for 24 months. Associations between executive functioning, caregiver monitoring, and longitudinal adherence were evaluated with linear mixed models. RESULTS Up to 38% of adolescents had elevated executive functioning scores indicating more severe impairments, with rates varying by scale and reporter (adolescent vs. caregiver). Caregiver monitoring showed a significant, negative association with adherence, but adolescents' executive functioning was not significantly associated with adherence. Neither variable was associated with the rate of change in adherence over time. CONCLUSIONS Given that adolescents' executive functioning was not associated with antihypertensive medication adherence or changes in adherence over time, adherence to daily pill-form medications may involve less cognitive effort than more complex medical regimens. Higher levels of caregiver monitoring were unexpectedly associated with lower adherence levels. This unanticipated finding may reflect increased caregiver monitoring efforts when faced with adolescents' medication nonadherence, but this finding warrants further investigation. Adolescents with CKD who are nonadherent may benefit from medication adherence-promoting strategies beyond increasing caregiver monitoring. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Background Participant retention is a major challenge in clinical research, especially in studies with multiple, longitudinal research assessments. Despite the importance of retention methods, there is little empirical research on how cohort retention efforts are perceived by study participants. Research Question To evaluate the association between the number of attempts undertaken to contact participants for research assessments in a longitudinal cohort study and participants' feeling of being bothered regarding such contact attempts. Study Design and Methods Secondary analysis of 315 ARDS survivors participating in a prospective study using comprehensive strategies for participant follow-up at 6 and 12 months that achieved > 95% participant retention. After completing a 242-question research assessment lasting 20 to 40 min, participants were surveyed for feedback. Results At 6 and 12 months, only 5% and 8% of participants, respectively, reported being bothered "more than a little bit" by the study contact attempts, with an OR of 1.06 (95% CI, 1.02-1.10) for each contact attempt. Participants' mental health symptoms at follow-up assessment were not associated with reports of being bothered. Interpretation Comprehensive cohort retention efforts can achieve > 95% retention rates in a national longitudinal study, with most participants reporting little or no bother by contact attempts. Despite a high frequency of mental health symptoms in this population, such symptoms were not associated with participant feedback regarding contact attempts. Careful training of research staff may be important in achieving such results.

Background In the United States, COPD is a leading cause of mortality, with a substantial societal health and economic burden. With anticipated population growth, it is important for various stakeholders to have an estimate for the projected burden of disease. Research Question The goal of this study was to model the 20-year health and economic burden of COPD, from 2019 to 2038, in the United States. Study Design and Methods Using country-specific data from published literature and publicly available datasets, a dynamic open cohort Markov model was developed in a probabilistic Monte Carlo simulation. Population growth was modeled across different subgroups of age, sex, and smoking. The COPD prevalence rates were calibrated for different subgroups, and distributions of severity grades were modeled based on smoking status. Direct costs, indirect absenteeism costs, losses of quality-adjusted life years (QALYs), and number of exacerbations and deaths associated with COPD were projected. Results The 20-year discounted direct medical costs attributable to COPD were estimated to be $800.90 billion (95% credible interval [CrI], 565.29 billion-1,081.29 billion), with an expected $337.13 billion in male subjects and $463.77 billion in female subjects. The 20-year discounted indirect absenteeism costs were projected to be $101.30 billion (70.82 billion-137.41 billion). The 20-year losses of QALYs, number of exacerbations, and number of deaths associated with COPD were 45.38 million (8.63 million-112.07 million), 315.08 million (228.59 million-425.33 million), and 9.42 million (8.93 million-9.93 million), respectively. The proportion of disease burden attributable to continued smoking was 34% in direct medical costs, 35% in indirect absenteeism costs, and 37% in losses of QALYs over 20 years. Interpretation This study projects the substantial burden of COPD that the American society is expected to incur with current patterns for treatments and smoking rates. Mitigating such burden requires targeted budget appropriations and cost-effective interventions.

BACKGROUND: Sarcoidosis, one of the most common interstitial lung diseases, has significant health disparities. Approximately 50% of individuals affected with sarcoidosis will undergo spontaneous remission, but those who do not undergo remission often require long-term or lifelong treatment to prevent disease progression. We sought to assess the association between medication adherence and clinical outcomes in sarcoidosis. METHODS: Adult patients in the Johns Hopkins Sarcoidosis Clinic diagnosed with pulmonary sarcoidosis on treatment were eligible for enrollment. Questionnaires were administered to assess medication adherence, health-related quality of life (HRQoL), health-care utilization, and sociodemographic information. Clinical information was abstracted from medical charts including lung function, disease duration, comorbidities, and sarcoidosis organ involvement. RESULTS: A total of 117 participants were enrolled (57% women; 55% black; median age, 57 years). Within the cohort, 66% of individuals reported at least one nonadherent behavior. Higher medication adherence was associated with better HRQoL (P

Background Low inhaled corticosteroid (ICS) adherence is associated with increased asthma burden. This relationship is likely bidirectional, and may vary across adherence stages (initiation, implementation, and persistence). Studies rarely examine reciprocal influences. Objective To investigate the relationship between ICS implementation and asthma-related outcomes over 2 years, considering bidirectionality and temporal sequence. Methods Primary care records (1987-2012) from the Optimum Patient Care Research Database, United Kingdom, were used. Eligible patients were 6 years or older and had 3 or more years of continuous registration starting 1 year before ICS initiation (index date), physician-diagnosed asthma, 2 or more ICS and/or short-acting β-agonist prescriptions each follow-up year, and no long-acting β-agonists, leukotriene receptor antagonists, or maintenance oral corticosteroids in the preceding year. ICS implementation (percentage of days covered) and risk domain asthma control (RDAC; no asthma-related hospitalizations, emergency visits, or outpatient visits and no oral corticosteroid or antibiotic prescriptions with evidence of respiratory review) were estimated for each prescription interval (period between 2 successive prescriptions). Multilevel analyses modeled bidirectional relationships between ICS implementation and RDAC (and its components), controlling for sociodemographic and clinical characteristics. Results In prescription data from 10,472 patients, ICS implementation in the preceding interval did not predict RDAC, but was weakly positively associated with simultaneous RDAC. Being male, non–current smoker, without chronic obstructive pulmonary disease diagnosis, and with fewer than 4 comorbidities significantly increased odds of RDAC. Asthma-related antibiotics and outpatient visits in the same interval and short-acting β-agonist overuse in the preceding and same interval predicted lower ICS implementation. Conclusions Patients may adapt their ICS use to their current needs without this impacting later RDAC.

BackgroundOn-line tutorials are being increasingly used in medical education, including in teaching housestaff skills regarding end of life care. Recently an on-line tutorial incorporating interactive clinical vignettes and communication skills was used to prepare housestaff at Johns Hopkins Hospital to use the Maryland Orders for Life Sustaining Treatment (MOLST) form, which documents patient preferences regarding end of life care. 40% of housestaff who viewed the module felt less than comfortable discussing choices on the MOLST with patients. We sought to understand factors beyond knowledge that contributed to housestaff discomfort in MOLST discussions despite successfully completing an on-line tutorial.MethodsWe conducted semi-structured telephone interviews with 18 housestaff who completed the on-line MOLST training module. Housestaff participants demonstrated good knowledge of legal and regulatory issues related to the MOLST compared to their peers, but reported feeling less than comfortable discussing the MOLST with patients. Transcripts of interviews were coded using thematic analysis to describe barriers to using the MOLST and suggestions for improving housestaff education about end of life care discussions.ResultsQualitative analysis showed three major factors contributing to lack of housestaff comfort completing the MOLST form: [1] physician barriers to completion of the MOLST, [2] perceived patient barriers to completion of the MOLST, and [3] design characteristics of the MOLST form. Housestaff recommended a number of adaptations for improvement, including in-person training to improve their skills conducting conversations regarding end of life preferences with patients.ConclusionsSome housestaff who scored highly on knowledge tests after completing a formal on-line curriculum on the MOLST form reported barriers to using a mandated form despite receiving training. On-line modules may be insufficient for teaching communication skills to housestaff. Additional training opportunities including in-person training mechanisms should be incorporated into housestaff communication skills training related to end of life care.

Introduction: We evaluated risk factors and demographic characteristics of associated with mild cognitive impairment (MCI) in patients with COPD. Methods: 220 individuals with COPD enrolled in a cohort study designed to evaluate anxiety conducted at 16 clinical centers. Cognitive impairment was assessed with the Montreal Cognitive Assessment (MoCA), a cutoff score of Results: The median age was 65 years and 54% of participants were male. 119(54%) of participants had MCI as classified by MoCA. In multivariable logistic regression, higher odds ratios (OR) (95% confidence interval) for MCI (MoCA) Conclusions: COPD patients commonly screen positive for MCI. Characteristics associated with MCI included age, African-American race, sleep disturbance and persistent phlegm.

BACKGROUND: Urban minority children are at risk for poor asthma outcomes and may not receive appropriate primary or subspecialty care. OBJECTIVE: We hypothesized that preschool children with asthma whose caregivers reported more barriers to care would be less likely to have seen their primary care provider (PCP) or an asthma subspecialist and more likely to have had a recent emergency department (ED) visit for asthma. METHODS: The Barriers to Care Questionnaire (BCQ) measures expectations, knowledge, marginalization, pragmatics, and skills. We assessed asthma control via TRACK and these outcomes: PCP visits for asthma in past six months, subspecialty care (allergist or pulmonologist) in past two years, and ED visits in past three months. RESULTS: 395 caregivers (96% African-American, 82% low-income, 96% Medicaid) completed the BCQ. Sixty percent(N=236) of children had uncontrolled asthma, 86% had seen a PCP, 23% had seen a subspecialist, and 29% had an ED visit. Barriers related to marginalization were associated with decreased likelihood of PCP (OR 0.95, p=0.014) and subspecialty visits (OR 0.92, p=0.019). Overall BCQ score was associated with decreased likelihood of subspecialty care (OR 0.98, p=0.027). Barriers related to expectations, knowledge, pragmatics, and skills were not associated with any of the care outcomes. CONCLUSIONS: Among low-income, predominantly African-American preschool children with asthma, primary and subspecialty care were less likely if caregivers reported past negative experiences with the healthcare system (marginalization). Clinicians who serve at-risk populations should be sensitive to families’ past experiences and should consider designing interventions to target the most commonly reported barriers. WHAT’S NEW: In a group of preschool-age, urban, predominantly African-American children with asthma, caregiver-reported barriers related to marginalization were associated with decreased likelihood of primary and subspecialty asthma care, indicating a potential target for future interventions to improve asthma outcomes.

Rationale: The tobacco harm reduction literature is replete with vague language, far-reaching claims, and unwarranted certainty. The American Thoracic Society has increasingly recognized the need for a framework for reliably making such claims. Evidence-based standards improving the scientific value and transparency of harm reduction claims are expected to improve their trustworthiness, clarity, and consistency. Methods: Experts from relevant American Thoracic Society committees identified key topic areas for discussion. Literature search strategy included English language articles across Medline, Google Scholar, and the Cochrane Collaborative databases, with expanded search terms including tobacco, addiction, smoking, cigarettes, nicotine, and harm reduction. Workgroup members synthesized their evidentiary summaries into a list of candidate topics suitable for inclusion in the final report. Breakout groups developed detailed content maps of each topic area, including points to be considered for suggested recommendations. Successive draft recommendations were modified using an iterative consensus process until unanimous approval was achieved. Patient representatives ensured the document’s relevance to the lay public. Results: Fifteen recommendations were identified, organized into four framework elements dealing with: estimating harm reduction among individuals, making claims on the basis of population impact, appropriately careful use of language, and ethical considerations in harm reduction. Discussion: This statement clarifies important principles guiding valid direct and inferential harm reduction claims. Ideals for effective communication with the lay public and attention to unique ethical concerns are also delineated. The authors call for formal systems of grading harm reduction evidence and regulatory assurances of longitudinal surveillance systems to document the impact of harm reduction policies.

BACKGROUND: Medical provider assessment of nonadherence is known to be inaccurate. Researchers have suggested using a multimethod assessment approach; however, no study has demonstrated how to integrate different measures to improve accuracy. This study aimed to determine if using additional measures improves the accurate identification of nonadherence beyond provider assessment alone. METHODS: Eighty-seven adolescents and young adults (AYAs), age 11–19 years, with chronic kidney disease (CKD) [stage 1–5/end-stage renal disease (ESRD)] and prescribed antihypertensive medication, their caregivers, and 17 medical providers participated in the multisite study. Five adherence measures were obtained: provider report, AYA report, caregiver report, electronic medication monitoring (MEMS), and pharmacy refill data [medication possession ratio (MPR)]. Concordance was calculated using kappa statistic. Sensitivity, specificity, positive predictive power, and negative predictive power were calculated using MEMS as the criterion for measuring adherence. RESULTS: There was poor to fair concordance (kappas = 0.12–0.54), with 35–61% of AYAs classified as nonadherent depending on the measure. While both providers and MEMS classified 35% of the AYAs as nonadherent, sensitivity (0.57) and specificity (0.77) demonstrated poor agreement between the two measures on identifying which AYAs were nonadherent. Combining provider report of nonadherence and MPR < 75% resulted in the highest sensitivity for identifying nonadherence (0.90) and negative predictive power (0.88). CONCLUSIONS: Nonadherence is prevalent in AYAs with CKD. Providers inaccurately identify nonadherence, leading to missed opportunities to intervene. Our study demonstrates the benefit to utilizing a multimethod approach to identify nonadherence in patients with chronic disease, an essential first step to reduce nonadherence.

Introduction Individuals with Sickle Cell Disease (SCD) require regular, and specialized treatment to manage their health. The COVID-19 pandemic disrupted in person medical visits for all individuals, with a rapid transition to telemedicine to provide medical care. Emerging data shows that the use of telemedicine may provide easier access to care and remove barriers to clinic attendance and improve access to appropriate medical care. Objective The purpose of this study was to use qualitative methods to understand the patients' experiences with telemedicine, identify patient preferences for type of appointment, and possible suggestions to improve telemedicine care. Methods Patients from the Johns Hopkins Sickle Cell Center for Adults who had at least one telemedicine visit were invited to participate in a semi structured interview via zoom meeting or telephone. The interview asked participants about their satisfaction with telemedicine care, barriers to telemedicine, benefits and risks of telemedicine and possible telemedicine improvements. Interviews were recorded, transcribed and coded by two independent raters using thematic analyses to understand the experiences of telemedicine during the COVID-19 pandemic. Results Overall, 30 adults with SCD who had at least one telemedicine visit were invited to participate and completed their interview (mean age 41 years ± xx, 67% female, 93% Black/African American, 3% Multi-Race, 3% Other). "...I can't ignore the convenience of not having to worry about transportation ... that there's nothing to stop me from getting there." During a SCD pain crisis it can it challenging to move and receive treatment as one participant reported "Maybe sometimes I might have pain...then moving around makes it difficult. So, getting in the car and finding somebody to drive you to a hospital or to whatever clinic would be difficult". Being able to access specialized SCD care even while in pain is important. Having the option of either having telemedicine or in person visits was important to SCD patients "I could treat my crisis here at home. I don't have to go to the emergency room for it. So, if I can see my doctor in the tele-visit appointment and it's going to be constantly every day ... And when it's getting worse, then I could go to the emergency room more if needed. If it's not needed, I don't even need to go". Another emerging theme amongst participants was despite the benefits from telemedicine, they also wanted to continue having in-person visits when they needed. SCD participants felt due to their SCD they still needed to see their doctor in person but it did not have to be for every visit "Well, I think telemedicine, for me, can be used in a setting where there's no such an emergency. Like if I'm having a routine exam, I don't mind having the telemedicine. But if ... I'm not feeling well ... I don't want to be having a telemedicine". SCD participants felt they needed a physical exam periodically. "The only thing I didn't like about it was if I'm having some discomfort or some pain... there was no way for the physician to physically examine me". Along with the lack of physical exam, there were concerns about the lack of vital signs "... the drawbacks would be the lack of the vitals being taken or there's not the personal touch and stuff". Conclusion The COVID-19 pandemic has presented many obstacles for patients to receive care. People living with SCD found telemedicine to be a positive tool to receive treatment. Patients reported the desire to continue with telemedicine even after the COVID -19 pandemic. Telemedicine allows for more accessibility for a group of individuals who already have numerous barriers to treatment. Future research can seek to identify the impact that telemedicine has on no-show rates, health care utilization, and the impact telemedicine has on patient reported quality of life. Disclosures Lanzkron: Teva: Current holder of individual stocks in a privately-held company; Shire: Research Funding; GBT: Research Funding; CSL Behring: Research Funding; Novo Nordisk: Consultancy; Bluebird Bio: Consultancy; Pfizer: Current holder of individual stocks in a privately-held company; Imara: Research Funding; Novartis: Research Funding.

Introduction: The COVID-19 pandemic presented exceptional challenges to caring for adults with sickle cell disease (SCD) and necessitated a rapid transition to telemedicine, disrupting established care systems within a population that already faces unique and challenging medical needs. Although implementation of telemedicine care assumed reliable patient access to the requisite technology, as well as adequate spaces in which to complete visits, pre-pandemic barriers to in-person visits were also considerable, and many patients lacked access to reliable transportation and childcare or could not afford to miss work to attend clinic. Given the scarcity of research on the acceptability of telemedicine care for SCD patients, the pandemic has provided a critical and necessary opportunity to study patient satisfaction when using telemedicine modalities for regular SCD care. The objective of this study was to identify which patient groups rate telemedicine high in satisfaction and usability. Methods: We surveyed 99 patients of the Sickle Cell Clinic for adults at Johns Hopkins who had any form of SCD, were age 18 or above, and participated in at least one video visit between March-July 2020. Telemedicine satisfaction was assessed by the Telemedicine Satisfaction Questionnaire (TSQ), and usability was assessed by the System Usability Scale (SUS). Patients' engagement in their healthcare was assessed by the Patient Activation Measure (PAM13). We conducted linear regression with TSQ and SUS as outcomes and participant characteristics as predictors. Results: Participant characteristics (briefly, mean age 39, 95% African American, 72% female, and 81% with education level above high school) and their association with TSQ and SUS are shown in Table 1. Mean SUS was 72/100 (SD 15), slightly above the defined average usability of 68; mean TSQ was 4.1 (SD 0.5) on a 5-point Likert scale. Participants tended to prefer video visits for their regular care (mean rating of 6.6/10, SD 2.9) but not for management of acute pain (mean rating of 4.9/10, SD 3.2). Participants who preferred video visits for regular SCD care reported higher SUS (p Conclusions: Our findings suggest that telemedicine has above-average usability and high satisfaction for SCD patients, regardless of age, sex, and income. Patients who were more engaged with their healthcare were more likely to rate telemedicine satisfaction and usability high. Because SUS was negatively associated with disability, lower education level, public insurance, and unemployment, patients within these groups may need more assistance with telemedicine. To improve usability, clinics may consider incorporating support services for patients who have difficulty using telemedicine platforms. Altogether, telemedicine demonstrates promising acceptability to SCD patients across multiple demographic groups and may serve as another method in the toolkit for increasing accessibility to high quality care for these patients. Figure 1 Figure 1. Disclosures Lanzkron: Pfizer: Current holder of individual stocks in a privately-held company; Bluebird Bio: Consultancy; Novo Nordisk: Consultancy; GBT: Research Funding; Teva: Current holder of individual stocks in a privately-held company; Shire: Research Funding; CSL Behring: Research Funding; Novartis: Research Funding; Imara: Research Funding.

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

Adherence to medication comprises a multiphased temporal process involving (1) initiation of prescribed therapy, (2) implementation as prescribed, and (3) subsequent persistence. Medication adherence remains suboptimal in most patients with long-term respiratory conditions such as asthma and chronic obstructive pulmonary disease (COPD). Interventions have been shown to effectively improve treatment initiation, implementation, and persistence when delivered at the health care professional level or the system level, but demonstration of the cost-effectiveness of these interventions is necessary to ensure their widespread use. This review summarizes how health care professionals can intervene to improve medication adherence in patients with asthma and COPD, provides some examples of effective primary care interventions, and illustrates some of the challenges to optimal implementation arising from costeffectiveness modeling. Improving adherence is shown to be an economically viable treatment option for patients with asthma and COPD, but there are differences in the health economics pertaining to each condition and setting that can affect whether an intervention is considered cost-effective. Targeting adherence interventions at patients with the greatest to gain, and tailoring them to individual patient needs, may help to optimize costeffectiveness ratios and improve the probability of positive reimbursement decisions, systemwide implementation, and resultant health benefits. (C) 2016 The Authors. Published by Elsevier Inc. on behalf of the American Academy of Allergy, Asthma & Immunology. This is an open access article under the CC BY-NC-ND license.

Tobacco smoke exposure has been associated with more frequent hospitalizations in children with sickle cell disease (SCD), but previous studies have not quantified the exposure by objective methods. We enrolled 50 children and young adults with SCD in a retrospective and prospective cohort study and quantified tobacco smoke exposure by objective (salivary cotinine) and survey measures. We used a multivariable negative binomial regression model to evaluate the association between salivary cotinine and hospital admissions. Forty-five percent (22/49) of participants had significant elevation of salivary cotinine (≥ 0.5 ng/ml). The incidence risk ratio (IRR) for hospital admission for those with elevated cotinine was 3.7 (95% CI 1.8-8). Those exposed to secondhand smoke but not primary smokers (cotinine between 0.5 and 10 ng/ml) had a similarly increased risk of hospitalization [IRR 4.3 (95% CI 1.8-10)]. We show that an objective measure of tobacco smoke exposure, salivary cotinine, is strongly associated with the rate of hospital admissions in children and young adults with SCD. This association underscores the importance of screening for tobacco smoke exposure in people with SCD. Further investigation is warranted to determine the mechanisms of and to evaluate interventions to decrease tobacco smoke exposure.

Background In Cystic Fibrosis (CF), adherence to pulmonary medications is about 50% and decreases during adolescence. Effective interventions have not been integrated into CF care. This effectiveness study tested a brief, clinic-based behavioral intervention to improve adherence. Methods iCARE (I Change Adherence and Raise Expectations) was a pragmatic, clustered, 2-arm randomized controlled trial at 18 CF Centers. 607 adolescents with CF, ages 11–20 years, participated. Centers were randomized to IMPACT (n = 9; 300 adolescents), a brief problem-solving + education intervention, or standard care (SC; n = 9; 307 adolescents). IMPACT was delivered during a regularly scheduled clinic visit by a member of the clinical care team. The primary outcome was composite pulmonary medication possession ratio (cMPR); secondary endpoints were lung function, Body Mass Index percentile, courses of IV antibiotics, and health-related quality of life at 12 months. Results Effectiveness of the intervention was tested using mixed models, generalized estimating equations comparing IMPACT to SC. Fifty-eight percent of problem-solving sessions targeted barriers to airway clearance, exercise or nutrition, while 18% addressed pulmonary medications. Average intervention fidelity score was 67% (SD = 14%; Range = 25–100%). No significant intervention effects were found for cMPR or any of the secondary outcomes compared to SC. Conclusions The IMPACT intervention did not improve medication adherence or health outcomes over 12 months. Challenges to implementing the intervention as intended during busy clinic visits were identified. Trial Registry ClinicalTrials.gov; No.: NCT01232478; URL: www.clinicaltrials.gov.

Rationale: Socioeconomically disadvantaged patients with chronic obstructive pulmonary disease (COPD) often face barriers to evidence-based care that are difficult to address in public care settings with limited resources. Objectives: To determine the benefit of health coaching for patients with moderate to severe COPD relative to usual care. Methods: We conducted a randomized controlled trial of 9 months of health coaching versus usual care for English- or Spanish-speaking patients at least 40 years of age with moderate to severe COPD. Primary outcomes were COPD-related quality of life and the dyspnea subscale of the Chronic Respiratory Disease Questionnaire. Secondary outcomes were self-efficacy for managing COPD, exercise capacity (6-min walk test), and number of COPD exacerbations. Additional outcomes were COPD symptoms, lung function (forced expiratory volume in 1 s percent predicted), smoking status, bed days owing to COPD, quality of care (Patient Assessment of Chronic Illness Care), COPD knowledge, and symptoms of depression (Patient Health Questionnaire). Outpatient visits, emergency department visits, and hospitalizations were assessed by review of medical records. Generalized linear modeling was used to adjust for baseline values and account for clustering by clinic. Results: Of 192 patients enrolled, 158 (82%) completed 9 months of follow-up. There were no significant differences between study arms for the primary or secondary outcomes. At 9 months, patients in the coached group reported better quality of care (mean Patient Assessment of Chronic Illness Care score, 3.30 vs. 3.18; adjusted P = 0.02) and were less likely to report symptoms of moderate to severe depression (Patient Health Questionnaire score, ≥15) than those in the usual care arm (6% vs. 20%; adjusted P = 0.01). During the study, patients in the coaching arm had 48% fewer hospitalizations related to COPD (0.27/patient/yr vs. 0.52/patient/yr), but this difference was not significant in the adjusted analysis. Conclusions: These results help inform expectations regarding the limitations and benefits of health coaching for patients with COPD. They may be useful to health policy experts in assessing the potential value of reimbursement and incentives for health coaching–type activities for patients with chronic disease. Clinical trial registered with www.clinicaltrials.gov (NCT02234284).

OBJECTIVE: To investigate longitudinal associations of health beliefs, which included self-efficacy, outcome expectancies, and perceived barriers, and demographic risk factors (i.e., age, gender, race, and family income) with antihypertensive medication adherence in adolescents with chronic kidney disease (CKD) over 24 months. METHOD: The sample included 114 adolescents (M age = 15.03 years, SD = 2.44) diagnosed with CKD. Adolescents reported their self-efficacy for taking medications, medication outcome expectancies, and barriers to adherence at baseline and 12 and 24 months after baseline. Antihypertensive medication adherence was assessed via electronic monitoring for 2 weeks at baseline and 6, 12, 18, and 24 months after baseline. RESULTS: Adherence increased and then decreased over the 2-year study period (inverted U-shape). Self-efficacy, outcome expectancies, and barriers did not change over time. Older adolescent age, female gender, African American race

Purpose To understand the role of Maryland Head Start (HS) programs in asthma care and identify resources and needs to improve health outcomes. Methods A qualitative needs assessment was conducted with Maryland HS staff (n = 35) and parents/caregivers of enrolled children with asthma (n = 16) from all 14 grantee programs in Maryland. Focus group discussions and interviews addressed strengths and challenges in current asthma control and opportunities for integration of an asthma care program into HS services. Transcripts were thematically analyzed using a modified Framework approach. Results HS programs actively communicate with families about asthma management and facilitate communication between families and primary care providers (PCPs). Both HS staff and families reported a strong trusting relationship allowing HS staff to provide asthma management support. HS needs strong linkages with supportive services and PCP offices to engage families, address environmental triggers, and educate staff. While families across the state report interest in peer education on asthma through HS, there were some region-specific asthma care barriers for urban and rural programs. Conclusion This needs assessment confirmed interest among all stakeholders in integrating asthma care through HS and identified communication strategies, supportive infrastructure, and addressing regional access to care as key elements for program design.

Rationale: Anxiety is a common comorbidity of chronic obstructive pulmonary disease (COPD) that is associated with higher morbidity and mortality. We evaluated three anxiety screening questionnaires: the Generalized Anxiety Disorder 7-Item Scale (GAD-7), the Hospital Anxiety and Depression Scale Anxiety subscale (HADS-A), and the Anxiety Inventory for Respiratory Disease (AIR). Objectives: To evaluate and compare the test performance characteristics of three anxiety screening questionnaires, using the Mini-International Neuropsychiatric Interview (MINI), version 7.0, as the “gold standard.” Methods: Individuals with COPD were recruited at 16 centers. The MINI and questionnaires were administered by trained research coordinators at an in-person visit and readministered by telephone 2–4 weeks later. A composite score for the presence of any Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-V) anxiety disorder was computed, based on the MINI as the gold standard, compared with a participant screening positive on self-report measures for these analyses. Results: Two hundred and twenty eligible individuals with COPD were enrolled; 219 completed the study. Eleven percent were identified as having a DSM-V anxiety disorder, based on the MINI. Elevated anxiety symptoms based on questionnaires were 38% for the AIR, 30% for the GAD-7, and 20% for the HADS-A. Area under the receiver operating characteristic curve (AUC) was highest for the GAD-7 (0.78; 95% confidence interval [CI], 0.69–0.87), followed by the HADS-A (0.74; 95% CI, 0.64–0.84) and the AIR (0.66; 95% CI, 0.56–0.76). The AUC for the GAD-7 was significantly greater than for the AIR (P = 0.014). Sensitivity was not statistically different among the questionnaires: 77% for the GAD-7, 63% for the HADS-A, and 66% for the AIR. The HADS-A had the highest specificity, 85%, which was significantly higher than that of the GAD-7 (77%; P

BACKGROUND: Having a medication available in the home is a prerequisite to medication adherence. Our objectives with this study are to assess asthma medication readiness among low-income urban minority preschool-aged children, and the association between beliefs about medications and medication readiness. METHODS: During a baseline assessment, a research assistant visited the home to administer a caregiver survey and observe 5 criteria in the medication readiness index: the physical presence and expiration status of medications, the counter status of metered-dose inhalers, and caregiver knowledge of medication type and dosing instructions. RESULTS: Of 288 enrolled children (mean age 4.2 years [SD: 0.7], 92% African American, 60% boys), 277 (96%) of their caregivers reported a rescue medication, but only 79% had it in the home, and only 60% met all 5 of the medication readiness criteria. Among the 161 children prescribed a controller medication, only 79% had it in the home, and only 49% met all 5 readiness criteria. Fewer worries and concerns about medications were associated with higher odds of meeting all 5 readiness criteria for controller medications. CONCLUSIONS: Inadequate availability of asthma medications in the home is a barrier to adherence among low-income urban preschoolers. Assessment of medication readiness should be incorporated into clinical care because this is an underrecognized barrier to adherence, and interventions are needed to improve medication management and knowledge to increase adherence.

OBJECTIVE: Asthma disproportionately affects minority groups, low income populations, and young children under 5. Head Start (HS) programs predominantly serve this high-risk population, yet staff are not trained on asthma management. The objective of this study was to assess a 5-year, multicomponent HS staff asthma education program in Baltimore City HS programs. METHODS: All HS programs were offered annual staff asthma education by a medical research team that included didactic lectures and hands-on training. Attendees received continuing education credits. HS staff were anonymously surveyed on asthma knowledge and skills and asthma medication management practices in Year 1 (preimplementation) and Year 5. RESULTS: There was an estimated response rate of 94% for Year 1 and 82% for Year 5. Compared to staff in Year 1, Year 5 staff were significantly more likely to report they had very good knowledge and skills related to asthma [odds ratio (OR) 1.63; p < 0.05] and were engaged in asthma care activities (OR 2.02; p < 0.05). Self-reported presence of asthma action plans for all children with asthma was 82% at Year 1 and increased to 89% in Year 5 (p = 0.064). CONCLUSIONS: Year 5 HS staff reported higher self-assessed knowledge and skills, self-reports of asthma medication management practices, and self-reports of asthma activities compared to Year 1 staff. HS serves high-risk children with asthma, and a multicomponent program can adequately prepare staff to manage asthma in the child care setting. Our results indicate the feasibility of providing efficacious health skill education into child care provider training to reduce asthma knowledge gaps.

BACKGROUND: As mortality rates for patients treated in intensive care units decrease, greater understanding of the impact of critical illness on patients’ well-being is needed. OBJECTIVE: To describe the survivorship experience of patients who had acute respiratory failure by using the Patient Reported Outcomes Measurement Information System (PROMIS) framework. METHODS: A total of 48 adult patients who had acute respiratory failure completed at least 1 semistructured telephone-based interview between 5 and 18 months after their stay in the intensive care unit. Participants were asked about overall well-being and important health outcomes. RESULTS: Major themes were identified within each of the 3 PROMIS components: physical health, mental health, and social health.The following themes were particularly prominent: mobility impairments, pulmonary symptoms, fatigue, anxiety and depression symptoms, and decreased ability to work and participate in valued activities. Impacts on overall well-being and on relationships with friends and family members varied among the survivors. Some survivors reported gratitude, increased appreciation of life, and closer relationships to loved ones. Other survivors reported boredom, social isolation, and wishing they had not survived. CONCLUSIONS: Survivors of acute respiratory failure reported substantial issues with their physical, mental, and social health. Holistic assessments of outcomes of survivors of critical illness should capture the complex beneficial and adverse impacts of critical illness on survivors’ well-being and social health. (American Journal of Critical Care. 2017;26:456-465)

As the HIV-infected population ages and the burden of chronic comorbidities increases, adherence to medications for HIV and diabetes and hypertension is crucial to improve outcomes. We pilot-tested a pictorial aid intervention to improve medication adherence for both HIV and common chronic conditions. Adult patients with HIV and diabetes (DM) and/or hypertension (HTN) attending a clinic for underserved patients and at risk for poor health outcomes were enrolled. Patients were randomized to receive either a pictorial aid intervention (a photographic representation of their medications, the indications, and the dosing schedule) or a standard clinic visit discharge medication list. Adherence to antiretroviral therapy (ART) for HIV and therapy for DM or HTN was compared. Predictors of ART adherence at baseline were determined using logistic regression. Medication adherence was assessed using medication possession ratio (MPR) for the 6-month interval before and after the intervention. Change in adherence by treatment group was compared by ANOVA. Among the 46 participants, there was a trend towards higher adherence to medications for HIV compared with medications for hypertension/diabetes (baseline median MPR for ART 0.92; baseline median MPR for the medication for the comorbid condition 0.79, p = 0.07). The intervention was feasible to implement and satisfaction with the intervention was high. With a small sample size, the intervention did not demonstrate significant improvement in adherence to medications for HIV or comorbid conditions. Patients with HIV are often medically complex and may have multiple barriers to medication adherence. Medication adherence is a multifaceted process and adherence promotion interventions require an approach that targets patient-specific barriers.

Beliefs about medication have been associated with adherence in other diseases but there are no existing disease-specific medication beliefs questionnaires for CF. This mixed-methods validated the Cystic Fibrosis Medication Belief Questionnaire (CF-MBQ), based on social cognitive theory.Based on previous research, items were developed for five domains: motivation, self-efficacy, perceived importance, and decisional balance to take or miss medications. Cognitive interviews were conducted with 15 adult patients with CF to refine item development. 128 patients with CF completed an online survey and objective medication adherence was measured using pharmacy refill data.The five subscales demonstrated strong psychometric properties, with adequate-to-good internal consistency scores. More importantly, each domain demonstrated construct validity with adherence.These theoretically-derived measures may be important for clinical purposes to provide guidance on appropriate interventions to improve adherence and for research to provide enhanced understanding on patient determinants of medication adherence.

OBJECTIVE: To compare the relative quantity of talk between providers, caregivers, and adolescents and young adults (AYAs) with chronic kidney disease (CKD) and how communication differs by age. METHODS: During nephrology clinic visits, conversations between AYAs with CKD (N = 99, ages 11 –20, median = 15), their caregivers, and providers (N=19) were audiotaped and coded using the Roter Interaction Analysis System. Linear mixed models tested AYA age differences in talk frequency by AYAs, caregivers, and providers. Post-hoc analyses tested differences in talk using AYA age groups. RESULTS: During clinic visits, providers spoke the most (63.7%), and caregivers spoke more (22.6%) than AYAs (13.7%). Overall talk differed by AYA age in AYAs (p < 0.001) and caregivers (p

The purpose of this study is to evaluate the mediating role of perceptions of primary care (PC) on the association between depression and PC clinic attendance among caregivers of children with asthma. In adults, depression is associated with lower PC clinic attendance and ∼25% of mothers presenting to a pediatric PC clinic will screen positive for depression. Adults' perceptions about their medical care mediate the depression-clinic attendance relation, but this has not been tested in children or in an asthma population.This is a secondary prospective data analysis of 141 caregivers of Head Start children diagnosed with asthma, offered an intervention to reduce barriers to PC. Caregivers rated their depressive symptoms and perceptions of PC (access, provider contextual knowledge, and continuity of care) at baseline. PC clinic attendance was tracked prospectively for 6-months.At baseline, 26% of caregivers screened positive for depression. Within 6-months, 66% of children attended a PC appointment. A positive depression screen was not associated with PC attendance (p = 0.07) or continuity of care (p = 0.98) but was inversely associated with perceptions of both access (p = 0.03) and provider contextual knowledge (p = 0.02). Though the total indirect effect was not significant, the specific indirect effect of depression on PC attendance through access was significant (95% CI: 0.01, 0.68).Providing tangible resources to reduce barriers to PC without addressing perceptions of access may not sufficiently improve PC clinic attendance in pediatric asthma. Screening caregivers for depression may identify families requiring targeted interventions to improve their perceptions of access.

IntroductionSarcoidosis is a multisystem granulomatous inflammatory disorder. Sarcoidosis is associated with significant morbidity and rising healthcare utilisation. Patients with sarcoidosis report higher psychological symptoms than the general population. We evaluated the association between depressive and anxiety symptoms and clinical outcomes in patients with pulmonary sarcoidosis requiring treatment.MethodsAdult patients in the Johns Hopkins Sarcoidosis Clinic diagnosed with pulmonary sarcoidosis on treatment were eligible for enrollment. Questionnaires were administered to assess depressive and anxiety symptoms, healthcare utilisation and health-related quality of life (HRQoL).Results112 participants were enrolled (57% women, 53% African American, median age: 57 years). 34% of participants screened positive for mild and 20% for moderate–severe depressive symptoms. 25% of participants screened positive for mild and 12% for moderate–severe anxiety symptoms. Participants with moderate–severe psychological symptoms had a higher odds of an emergency department visit in the previous 6 months (8.87 for depressive symptoms and 13.05 for anxiety symptoms) and worse HRQoL compared with participants without psychological symptoms. Participants with moderate–severe depressive symptoms had lower diffusion capacity of the lungs for carbon monoxide % predicted compared with those without depressive symptoms. There was no association between elevated psychological symptoms and the odds of hospitalisation, forced vital capacity % predicted and forced expiratory volume in 1 second % predicted.ConclusionPsychological symptoms may be associated with worse clinical outcomes in sarcoidosis. Improving the recognition through clinic screening and referral for treatment of depression and anxiety in sarcoidosis may reduce acute healthcare utilisation and improve HRQoL.

As new medications continue to come to market to improve health in individuals with cystic fibrosis (CF), patient adherence is increasingly more important to address. Currently, adherence for pulmonary medications is approximately 50% for people with CF. There has been recent research that has demonstrated that poor adherence is linked to worse health outcomes. This review summarizes recent research on the impact of adherence on lung health and highlights future areas of research and clinical practice to address this growing need.Recent research has indicated that nonadherence is associated with increased hospitalizations and pulmonary exacerbations, lower baseline lung function, and longer length of stays. However, most of the research has been done using pharmacy refill records as an objective measure of adherence. Electronic monitoring of medications provides more detailed information about patterns of use, which can directly inform clinical care. Furthermore, there have been few published clinical trials evaluating behavioral interventions to promote adherence.Given the recent research linking adherence to lung health outcomes, there is a growing need to measure and evaluate adherence in clinical care. As new medications are approved for CF, methods to monitor adherence also need to be developed and approved. Clinicians need to continue to assess barriers to adherence to be able to individually tailor interventions to a patient's needs.

Hypertension affects up to 5 % of all children, but little is known about the role of medication adherence on blood pressure (BP) control. In this study we examined the association between adolescents’ antihypertensive medication adherence and BP control, investigating for racial disparities. A total of 21 adolescents with essential hypertension [mean age 14.7 ± 2.0 years, 57 % male, 52 % African American] were recruited from a pediatric nephrology clinic. Objective medication adherence measures were obtained with Medication Event Monitoring System (MEMS) caps and pharmacy refill records to determine medication possession ratios (MPRs). The African Americans adolescents had lower medication adherence than non-African Americans adolescents based on the MPR over the past 12 months (mean 0.54 ± 0.21 vs. 0.85 ± 0.16, respectively; p

Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy that causes significant morbidity and mortality related to chronic hemolytic anemia, vaso-occlusion, and resultant end-organ damage. Tobacco smoke exposure (TSE) through secondhand smoke exposure in people with SCD of all ages and through primary smoking in adolescents and adults is associated with significantly increased morbidity, with increased rates of emergency department visits and hospitalizations for painful vaso-occlusive crises and acute chest syndrome (ACS). Secondhand smoke is also associated with pulmonary function abnormalities in children with SCD who are already at risk for pulmonary function abnormalities on the basis of SCD. TSE is emerging as one of the few modifiable risk factors of SCD. This review discusses the current state of the evidence with respect to TSE and SCD morbidity, discusses potential mechanisms, and highlights current gaps in the evidence and future research directions.

Intensive care unit (ICU) patients' expected post-discharge outcomes are rarely discussed in family meetings despite this information being centrally important to patients and their families.To characterize intensivist-identified barriers and facilitators to discussing post-discharge outcomes with surrogates of ICU patients.Qualitative study conducted via one-on-one, semistructured telephone interviews with 23 intensivists from 20 hospitals with accreditation council for graduate medical education-accredited critical care medicine programs in 16 states. A limited application of grounded theory methods was used to code transcribed interviews and identify themes and illustrative quotes.Intensivists reported tension between their professional responsibility to discuss likely functional outcomes versus uncertainty about their ability to predict those outcomes for an individual patient. They cited three main barriers as limiting their ability to conduct conversations about post-discharge outcomes with ICU surrogates: (1) incorrectly optimistic expectations for recovery among ICU surrogates, (2) having little or no contact with their patients after ICU discharge, and (3) minimal confidence applying existing outcomes research to individual patients. Despite these barriers, experience talking to ICU surrogates, seeing ICU survivors in the outpatient setting, and trusted research on functional outcomes were identified as important facilitators to discussing likely patient outcomes with surrogates. Intensivists generally welcomed questions from surrogates about post-discharge outcomes as opportunities to initiate conversations about prognosis and patient values.In this sample of intensivists from 20 academic hospitals, experience conducting conversations with surrogates and interactions with ICU survivors as outpatients were identified as facilitating discussion of expected post-discharge outcomes while optimistic surrogate expectations and prognostic uncertainty were barriers. There was tension between self-perceived ability to prognosticate and belief in a professional obligation to discuss patient outcomes.