Concordance between patient-centered and adaptive behavior outcome measures after applied behavior analysis for autism.

BACKGROUND: Applied behavior analysis (ABA) is an evidence-based approach to autism spectrum disorder that has been shown in clinical trials to improve child functional status. There is substantial focus in ABA on setting and tracking individualized goals that are patient-centered, but limited research on how to measure progress on such patient-centered outcomes. PURPOSE: The purpose of this investigation was to assess concordance between patient-centered and standard outcome measures of treatment progress in a real-world clinical sample of children receiving ABA for autism spectrum disorder. METHODS: This observational study used a clinical sample of children ages 3 to 16 years (N = 154) who received 24 months of ABA from an integrated health system. Concordance between three outcome measures after ABA was assessed using a correlation matrix: (1) patient-centered measures of progress on individualized treatment goals, (2) caregiver-centered measure of progress on treatment participation goals, and (3) the Vineland Adaptive Behavior Scales adaptive behavior composite. RESULTS: There was limited concordance among measures at both 12 and 24 months of ABA. None of the patient-centered measures showed significant positive correlation with adaptive behavior composite difference scores at either 12 or 24 months, nor did the caregiver measure. The percentage of children achieving clinically meaningful gain on patient-centered goal measures increased between 12 and 24 months of ABA, while the percentage of children achieving clinically meaningful gains in adaptive behavior declined during the same time period. CONCLUSIONS: In a health system implementation of ABA, there was limited concordance between patient-centered and standard measures of clinically meaningful treatment progress for children with ASD. Clinicians should have ongoing dialogue with patients and parents/caregivers to ensure that interventions for ASD are resulting in progress towards outcomes that are meaningful to patients and families.

Parent intentions to vaccinate children with autism spectrum disorder against COVID-19.

PURPOSE: The purpose of this study was to investigate associations between parent vaccine confidence and intention to have their child with autism vaccinated against COVID-19. DESIGN AND METHODS: A cross-sectional, web-based survey was conducted from May to July 2021 with parents of children with autism spectrum disorder (N = 322) who were members of an integrated healthcare system in Southern California. RESULTS: Approximately 35% of parents intended to vaccinate their child against COVID-19. In adjusted models, positive vaccine beliefs-but not belief in vaccine harm, healthcare provider trust, or parent vaccination status-were associated with intention to vaccinate. CONCLUSIONS: Though parents usually trust recommendations from pediatric healthcare providers to make decisions about their child's health, these findings suggest that relying on trusted relationships alone may not be sufficient when discussing COVID-19 vaccines and that additional education to bolster vaccine confidence may be needed. PRACTICE IMPLICATIONS: Pediatric healthcare providers should reinforce the benefits of vaccines for parents who are undecided about COVID-19 vaccines for their children and provide education and evidence-based recommendations to parents who hold erroneous vaccine beliefs about risks, benefits, and current evidence, especially those related to autism.

Bariatric Surgical Alterations in Tolerability, Enjoyment and Cravings in the Diet (BSATED) instrument: A new scale to measure food preferences following bariatric surgery.

Bariatric surgery is associated with changing food preferences, but it is not known whether these changes differ by type of operation or are associated with weight loss. The current study presents validation results for a new 27-item scale, Bariatric Surgical Alterations in Tolerability, Enjoyment and Cravings in the Diet (BSATED). This scale measured enjoyment, craving, and intolerance changes for nine food and beverage categories common to dietary habits in the Southern California region of the U.S. one year following bariatric surgery in the Bariatric Experience Long Term (BELONG) study. Validation of BSATED was done using exploratory factor analyses, construct validity with other conceptually related survey instruments, and criterion validity using hypothesized differences for operation type and percent total weight loss (%TWL) at 12-18 months after surgery. Participants (n = 999) were 86% female, 41% non-Hispanic White, with a mean age of 43.1 ± 11.3 years and a body mass index (BMI) of 43.4 ± 6.8 kg/m2 at the time of surgery. Participants reported less enjoyment and craving for high-fat meats (62%), grains (54%), candy and other desserts (e.g. candy bars, chocolate, ice cream) (52%), and sweet baked goods (48%) 12 months after surgery. These changes were more common among participants undergoing Roux-en-Y gastric bypass (RYGB) compared to those receiving sleeve gastrectomy (SG). Participants who reported decreased enjoyment and craving for foods and beverages that post-bariatric patients are counseled to reduce or avoid had greater %TWL at 12-18 months following surgery (p < .001 and p = .003 respectively). The foods and beverages in BSATED that post-bariatric patients are counseled to reduce or avoid could be used to understand how changes in enjoyment, craving and tolerability of these foods/beverages contribute to weight loss following surgery.

Development and Pilot Testing of Daily Interactive Voice Response (IVR) Calls to Support Antiretroviral Adherence in India: A Mixed-Methods Pilot Study.

This two-phase pilot study aimed to design, pilot, and refine an automated interactive voice response (IVR) intervention to support antiretroviral adherence for people living with HIV (PLH), in Kolkata, India. Mixed-methods formative research included a community advisory board for IVR message development, 1-month pre-post pilot, post-pilot focus groups, and further message development. Two IVR calls are made daily, timed to patients' dosing schedules, with brief messages (<1-min) on strategies for self-management of three domains: medical (adherence, symptoms, co-infections), mental health (social support, stress, positive cognitions), and nutrition and hygiene (per PLH preferences). Three ART appointment reminders are also sent each month. One-month pilot results (n = 46, 80 % women, 60 % sex workers) found significant increases in self-reported ART adherence, both within past three days (p = 0.05) and time since missed last dose (p = 0.015). Depression was common. Messaging content and assessment domains were expanded for testing in a randomized trial currently underway.

Pre-surgical factors related to latent trajectories of 5-year weight loss for a diverse bariatric surgery population.

BACKGROUND: Analyzing trajectories of weight loss may address how particular groups of patients respond to metabolic and bariatric surgery. OBJECTIVES: The Bariatric Experience Long Term (BELONG) study was designed to use a theoretical model to examine determinants of weight loss and recurrence. SETTING: Large integrated health system in Southern California with 11 surgical practices and 23 surgeons. METHODS: A total of n = 1338 patients who had metabolic and bariatric surgery were surveyed before surgery to measure factors related to median percent total weight loss (%TWL) over 5 years. Longitudinal weight data were available for n = 1024 (76.5% of the sample). Data were analyzed using latent growth mixture models (GMM) to estimate trajectories of weight change separately for gastric sleeve and bypass operations. These trajectories were then described using relevant variables from the baseline survey. RESULTS: For both gastric sleeve (n = 733) and bypass (n = 291) operations, 3 latent trajectories of median %TWL were found corresponding to most, moderate, and least %TWL. Sleeve trajectories were distinguished by body mass index at surgery and geocoded environmental factors. Bypass trajectories varied by self-reported and geocoded environmental factors, comorbidity burden, race, experiential avoidance, and weight control strategies. CONCLUSIONS: Future research should examine the role of the built and perceived environment in surgical weight loss. Bariatric practices should focus less on the presurgical period for predictors of long-term weight loss and begin efforts to monitor real-time patient-reported outcomes to help tailor intervention strategies for patients who either do not lose an expected amount of weight or who begin to experience weight recurrence.

Neighborhood deprivation and residential property values do not affect weight loss at 1 or 3 years after bariatric surgery.

OBJECTIVE: This study examined the association between individual- and neighborhood-level sociodemographic factors and surgical weight loss at 1 year (short term) and 3 years (long term). METHODS: Data were obtained from the baseline survey of the BELONG (Bariatric Experience Long Term) prospective longitudinal cohort study. Individual-level self-reported data on sex, race and ethnicity, education, and household income were obtained by survey. Data from the 2010 US Census were used to calculate area Neighborhood Deprivation Index score and median value of owner-occupied housing units at the census tract level. RESULTS: Patients (N = 1341) had a mean age of 43.4 (SD 11.3) years, were mostly female (86%), were mostly Black or Hispanic (52%), had some college education (83%), and had annual household incomes ≥$51,000 (55%). Percentage total weight loss was 25.8% (SD 9.0%) at year 1 and 22.2% (SD 10.5%) at year 3. Race and ethnicity and age were significant predictors of weight loss at 1 and 3 years with a small effect of self-reported household income at year 1. There were no significant associations between census tract-level Neighborhood Deprivation Index score or value of owner-occupied housing units and weight loss at either time point. CONCLUSIONS: Health systems could improve the chances of weight-loss maintenance after surgery by addressing factors related to racial and ethnic disparities and to income disparities.

Baseline Psychosocial, Environmental, Health, and Behavioral Correlates of 1- and 3-Year Weight Loss After Bariatric Surgery.

PURPOSE: Weight loss surgery is an effective, long-term treatment for severe obesity but individual response to surgery varies widely. The purpose of this study was to test a comprehensive theoretical model of factors that may be correlated with the greatest surgical weight loss at 1-3 years following surgery. Such a model would help determine what predictive factors to measure when patients are preparing for surgery that may ensure the best weight outcomes. MATERIALS AND METHODS: The Bariatric Experience Long Term (BELONG) study collected self-reported and medical record-based baseline information as correlates of 1- and 3-year % total weight loss (TWL) in n = 1341 patients. Multiple linear regression was used to determine the associations between 120 baseline variables and %TWL. RESULTS: Participants were 43.4 ± 11.3 years old, Hispanic or Black (52%; n = 699), women (86%; n = 1149), and partnered (72%; n = 965) and had annual incomes of ≥ $51,000 (60%; n = 803). A total of 1006 (75%) had 3-year follow-up weight. Regression models accounted for 10.1% of the variance in %TWL at 1-year and 13.6% at 3 years. Only bariatric operation accounted for a clinically meaningful difference (~ 5%) in %TWL at 1-year. At 3 years after surgery, only bariatric operation, Black race, and BMI ≥ 50 kg/m2 were associated with clinically meaningful differences in %TWL. CONCLUSIONS: Our findings combined with many others support a move away from extensive screening and selection of patients at the time of surgery to a focus on improving access to this treatment.

Randomized Study of Survey Recruitment Strategies for Parents of Autistic Children.

INTRODUCTION: This study aimed to compare phone, email, or text message recruitment strategies for engaging parents of autistic children in an online survey. METHOD: In this randomized study, a sample of 1,624 parents of autistic children spectrum disorder (autism) from an integrated health system in Southern California were sent an initial mailed letter and email simultaneously for baseline survey outreach. Then, participants were randomly assigned to one of three follow-up recruitment groups: phone, email, or text message. We compared the efficacy of recruitment strategies in multivariate models. RESULTS: All three follow-up methods were equally effective for eliciting a survey response. Parents of girls were less likely to respond to survey outreach attempts than parents of boys. DISCUSSION: Multiple modalities of survey recruitment, including digital and mobile approaches, effectively recruit parents of children in research.

Patient Outcomes After Applied Behavior Analysis for Autism Spectrum Disorder.

OBJECTIVES: The purpose of this study was to examine patterns of service receipt and patient outcomes for children receiving applied behavior analysis (ABA) for autism spectrum disorder (ASD) in an integrated health care system in which commercially insured children were covered by a state autism mandate. METHODS: This retrospective, observational study used a random sample of children with ASD (3-17 yrs) who were members of a large integrated health care system in Southern California and referred for ABA between January 2016 and November 2018. From the 4145 children referred, a random stratified sample of 334 was selected to extract data from clinical reports over 24 months of services. The primary outcome measures were time in ABA and child adaptive behavior. RESULTS: Thirteen percent of the sample never received ABA after referral. Of those who were referred for ABA, 66% initiated ABA and remained in services for 12 months, whereas less than half (46%) remained in services for 24 months. Having a history of special education was associated with longer time spent in ABA, whereas having a single parent was associated with discontinuation of ABA. A minority of children received a full ABA dose (28%), but the lowest functioning children still experienced clinically significant adaptive behavior gains after 24 months of ABA (p = 0.02). CONCLUSION: In a health system implementation of ABA for children with ASD, there were high rates of ABA discontinuation and low ABA dosing. These challenges may diminish the potential benefits of ABA, even in a context in which there is mandated commercial insurance coverage.

Habilitative Teletherapy for Children with Autism Spectrum Disorder: A Survey of Parents.

OBJECTIVE: The purpose of this study was to investigate whether service losses during the coronavirus disease 2019 (COVID-19) pandemic were associated with worsened parent mental health or child behavioral health among families of children with autism spectrum disorder and to identify factors associated with favorable parent appraisals of habilitative teletherapy (applied behavior analysis; speech, occupational, physical therapy) for their child. METHOD: This web-based survey study was conducted from May to July 2021 with parents whose children were receiving habilitative therapy for autism from an integrated health system. A total of 322 parents responded to the survey (20% response rate). The outcome variables were pandemic-related parent mental health, pandemic-related child behavioral health, and appraisal of habilitative teletherapy. Predictors were COVID-19-related services changes in health care or child care, COVID-19 history (COVID-19 stress, testing positive for COVID-19), and child autism factors (autistic behaviors, caregiving strain). RESULTS: Loss of regular child care was associated with higher odds of worsened parent mental health (odds ratio [OR] = 2.7, 95% confidence interval [CI] = 1.5-4.8); higher levels of caregiving strain were associated with worsened child behavioral health (OR = 2.3, 95% CI = 1.4-3.8). Higher levels of COVID-19 stress were associated with more favorable appraisals of telehealth (ß = 0.4, p < 0.01), whereas higher caregiving strain scores were associated with less favorable appraisals of telehealth (ß = -0.2, p < 0.01). CONCLUSION: During COVID-19, caregiving factors were associated with worsened parent mental health and worsened child behavioral health, and telehealth is not preferred by all families. Policy interventions to support caregivers, such as affordable, high-quality child care and paid family leave, are a high priority.

The association of 1-year weight loss from bariatric surgery and self-reported sleep: a prospective cohort.

OBJECTIVE: This study examined the association of weight loss following bariatric surgery with self-reported sleep quality after accounting for other sleep-related factors. METHODS: Participants were from the Bariatric Experience Long Term (BELONG) study. Participants completed a survey up to 6 months before surgery and approximately 1 year after surgery. The Pittsburgh Sleep Quality Index (PSQI) was used to measure sleep quality. One-year percentage total weight loss (%TWL) was determined from electronic medical records. Covariates included demographics, Charlson Comorbidity Index, geocoded variables to assess neighborhood quality, and physical activity. The authors assessed the association between %TWL at 1 year and PSQI component scores with separate cumulative logit models. RESULTS: There were 997 participants in the analytic cohort. Participants were 86.2% women, 37.0% Hispanic, and 13.7% Black adults. Mean one-year %TWL was 26.3 (SD 8.7). Each 1% increase in %TWL was associated with a 3% better daytime dysfunction score (odds ratio = 1.03; 95% CI: 1.02-1.05) and a 2% better sleep quality score (odds ratio = 1.02; 95% CI: 1.00-1.03). No significant differences were found for the other PSQI components. CONCLUSIONS: Weight loss from bariatric surgery was associated with better self-reported sleep at 1 year. For people undergoing bariatric surgery, there may be an added benefit of better sleep.

Cohort profile: The Bariatric Experience Long Term (BELONG): a long-term prospective study to understand the psychosocial, environmental, health and behavioural predictors of weight loss and regain in patients who have bariatric surgery.

PURPOSE: The Bariatric Experience Long Term (BELONG) prospective study cohort was created to address limitations in the literature regarding the relationship between surgical weight loss and psychosocial, health, behaviour and environmental factors. The BELONG cohort is unique because it contains 70% gastric sleeve and 64% patients with non-white race/ethnicity and was developed with strong stakeholder engagement including patients and providers. PARTICIPANTS: The BELONG cohort study included 1975 patients preparing to have bariatric surgery who completed a baseline survey in a large integrated health system in Southern California. Patients were primarily women (84%), either black or Hispanic (59%), with a body mass index (BMI) of 45.1±7.4 kg/m2, age 43.3±11.5 years old, and 32% had at least one comorbidity. FINDINGS TO DATE: A total of 5552 patients were approached before surgery between February 2016 and May 2017, and 1975 (42%) completed a baseline survey. A total of 1203 (73%) patients completed the year 1 and 1033 (74%) patients completed the year 3 postoperative survey. Of these survey respondents, 1341 at baseline, 999 at year 1, and 951 at year 3 were included in the analyses of all survey and weight outcome data. A total of 803 (60% of eligible patients) had survey data for all time points. Data collected were self-reported constructs to support the proposed theoretical model. Height, weight and BMI were abstracted from the electronic medical record to obtain the main outcomes of the study: weight loss and regain. FUTURE PLANS: We will collect self-reported constructs and obtain height, weight and BMI from the electronic medical record 5 years after bariatric surgery between April 2022 and January 2023. We will also collect patient experiences using focus groups of 8-12 patients each throughout 2022.

Accuracy of ICD-10-CM encounter diagnoses from health records for identifying self-harm events.

OBJECTIVE: Assess the accuracy of ICD-10-CM coding of self-harm injuries and poisonings to identify self-harm events. MATERIALS AND METHODS: In 7 integrated health systems, records data identified patients reporting frequent suicidal ideation. Records then identified subsequent ICD-10-CM injury and poisoning codes indicating self-harm as well as selected codes in 3 categories where uncoded self-harm events might be found: injuries and poisonings coded as undetermined intent, those coded accidental, and injuries with no coding of intent. For injury and poisoning encounters with diagnoses in those 4 groups, relevant clinical text was extracted from records and assessed by a blinded panel regarding documentation of self-harm intent. RESULTS: Diagnostic codes selected for review include all codes for self-harm, 43 codes for undetermined intent, 26 codes for accidental intent, and 46 codes for injuries without coding of intent. Clinical text was available for review for 285 events originally coded as self-harm, 85 coded as undetermined intent, 302 coded as accidents, and 438 injury events with no coding of intent. Blinded review of full-text clinical records found documentation of self-harm intent in 254 (89.1%) of those originally coded as self-harm, 24 (28.2%) of those coded as undetermined, 24 (7.9%) of those coded as accidental, and 48 (11.0%) of those without coding of intent. CONCLUSIONS: Among patients at high risk, nearly 90% of injuries and poisonings with ICD-10-CM coding of self-harm have documentation of self-harm intent. Reliance on ICD-10-CM coding of intent to identify self-harm would fail to include a small proportion of true self-harm events.