Jin-Shei Lai’s research while affiliated with Northwestern University and other places

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Publications (244)


Development of a Person‐Centered Measure of Dementia Caregiving Style
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January 2025

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Jennifer A Miner

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Background Approaches to caregiving interventions are often “one‐size‐fits‐all”, yet family caregivers for individuals with dementia have unique caregiving styles with which they enact daily care. Mixed‐methods work by this team identified 5 distinct caregiving style profiles that vary in: orientation toward oneself or the care partner, adaptability, understanding of dementia, emotional expression, and behavioral management. This study seeks to develop a person‐centered assessment of caregiving style such that interventions and services can be targeted to caregivers’ unique styles of care. Method Person‐centeredness of the Style measure is assessed with the NIH‐funded LINC‐AD’s Person‐Centered Measure Evaluation Tool (PC‐Met). Development phases assessed included: mixed‐methods exploratory research on caregiving style, iterative development and refinement of an item pool, cognitive interviews with caregivers, expert review, literacy and translatability review, and field testing of the refined items in 200 family/friend caregivers for a person living with dementia. Result Person‐centered practices in the development of a caregiving style measure include: co‐creation (e.g., caregiver feedback throughout, caregiver interview), accommodation (e.g., full disclosure of topics, exploring across stage of disease), pragmatism (e.g., translatability review), incorporation (e.g., using positive versus loss language), biopsychosocial/cultural components (e.g., utility across multiple settings), and systemic focus (e.g., use of shared language). Conclusion Caregiving style is associated with key outcomes of care (e.g., caregiver burden) and thus a person‐centered assessment measure can help tailor services and interventions to best fit unique styles of care, ultimately improving well‐being of the caregiver and quality of care for the person living with dementia.

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Conceptual model of Labor Culture as measured by the Revised Labor Culture Survey.
Disentangling Safety Culture’s Role in Reducing Cesarean Overuse: Creating a Revised Labor Culture Survey

September 2024

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17 Reads

Objective: To measure and assess the relationship of patient safety culture to reducing cesarean overuse. Study Setting: Maternity care hospitals in Michigan. Study Design: Cross-sectional observational design, combining individual survey data with hospital characteristics using existing databases. Multivariate Poisson regression assessed the associations between survey scores and hospital nulliparous term singleton vertex cesarean rates. Factor analysis determined the scalability of survey items. Data Collection Methods: Electronic survey distributed at the hospital site level. Principal Findings: A total of 3091 clinicians from 54 out of 57 eligible hospitals completed the survey. Confirmatory factor analysis demonstrated best fit with a univariate model with two local factors. The new scale encompassing both local factors, including vaginal birth microculture and safety culture, is entitled “Unit Norms.” The safety culture subdomain demonstrated an association with a reduction in hospital cesarean rate [−0.15; 95% CI: −0.27 to −0.04; incident rate ratio (IRR) 0.86], parallel to but lower in magnitude to vaginal birth microculture (−0.18; 95% CI: −0.35 to −0.02; IRR 0.84). Conclusions: Vaginal birth microculture remains the strongest predictor of cesarean delivery overuse; however, safety culture characteristics, including teamwork, psychological safety, and communication, correlate with lower cesarean delivery rates. Measuring these aspects of hospitals’ culture may be important for other areas of quality improvement initiatives focused on quality and safety.


Preparation and Rationale for a Patient-Reported Clinical Outcome Assessment Set of Fluid Overload for Drug Development in Nephrotic Syndrome

August 2024

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12 Reads

Glomerular Diseases

Introduction: Fluid overload is a source of substantial morbidity for adults and children with nephrotic syndrome (NS). Preparation and Rationale for a Fluid Overload in Nephrotic Syndrome Clinical Outcomes Assessment Set for Drug Development (Prepare-NS, 5UG3FD007308) was funded by the U.S. Food and Drug Administration to develop a core set of patient-reported and observer-reported (for young children) outcome measures of fluid overload for use in pharmaceutical trials across the lifespan. Methods: The Prepare-NS study team developed the proposed context of use with input from stakeholders. We conducted a scoping review to assess the available literature on relevant patient- and observer-reported measures and performed secondary analyses of existing qualitative and quantitative data. Results: The outcome set will aim to serve individuals two years of age and older with primary nephrotic syndrome conditions (specifically focal segmental glomerulosclerosis, minimal change disease, IgM nephropathy, membranous nephropathy, and childhood–onset nephrotic syndrome not biopsied). The existing literature describing patient reported outcomes in nephrotic syndrome largely relies on non-specific measures of health-related quality of life; fluid overload has been associated with lower scores on these measures. Conclusion: To address the gap in measure availability and fluid overload content, the Prepare-NS team has launched a set of qualitative studies for concept elicitation from the population of interest to inform development of new measures. The resulting measures subsequently will undergo psychometric evaluation and validation in a survey study.


Using ECHO program data to develop a brief measure of caregiver support and cognitive stimulation using the home observation for measurement of the environment-infant/toddler (HOME-IT)

July 2024

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9 Reads

Child Development

Data from three NIH Environmental influences on Child Health Outcomes (ECHO) Program cohorts that collected the HOME-Infant-Toddler (HOME-IT age 0-3 years) version were used to examine the reliability of a brief scale of caregiver support and cognitive stimulation. Participants with HOME-IT data (N = 2518) were included in this analysis. Mean child age at HOME-IT assessment was 1.51 years, 48% of children were female, and 43% of children identified as Black. A four-stage analysis plan was used to evaluate item response theory assumptions, item response theory model fit, monotonicity, scalability, item fit, and differential item functioning. Results indicate the feasibility of developing a reliable 10-item scale (reliability >0.7) with particularly high precision for children with lower levels of cognitive stimulation.


LGG-37. A PHASE III STUDY COMPARING TWO CARBOPLATIN CONTAINING REGIMENS FOR CHILDREN AND YOUNG ADULTS WITH PREVIOUSLY UNTREATED LOW-GRADE GLIOMA

June 2024

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7 Reads

Neuro-Oncology

BACKGROUND Low-grade glioma (LGG) is the most common childhood central nervous system tumor. Carboplatin/vincristine (CV) is a standard of care regimen used for incompletely resected tumors. Monthly carboplatin is an alternative regimen that has not been prospectively compared to CV previously in untreated patients. METHODS Patients ≤ 21 years with LGG and no treatment besides surgery were eligible. Patients were stratified according to NF1 status and randomized to Arm A (carboplatin/vincristine) or Arm B (carboplatin monthly). The primary endpoint was 3-year progression-free survival (PFS). Secondary endpoint analysis is underway and includes quality of life, tumor response rates, toxicity and association of molecular alterations on outcomes. Analyses included log-rank test and descriptive statistics. RESULTS There were 95 evaluable patients with a median age of 5 (range 0-18) years; 67 non-NF1 subjects (32 Arm A, 35 Arm B) and 28 NF1 subjects (14 Arm A, 14 Arm B). Three-year PFS was superior for patients without NF1 treated on Arm A (58%; 95% CI: 38%, 74%) versus Arm B (33%; 95% CI: 18%, 49%) (p=0.04). In patients with NF1, there was no statistical difference in PFS between those treated on Arm A (71%; 95% CI: 41%, 88%) and Arm B (93%; 95% CI: 59%, 99%) (p=0.08). Grade 3/4 toxicity neutropenia was more commonly seen in Arm A patients compared to Arm B for both NF and non-NF1 patients. Peripheral neuropathy was also more commonly seen in non-NF1 patients (Grade 1-4; 32%) compared to NF1 patients (7%) for patients treated on Arm A. There were 15 carboplatin reactions (Grade 1-4); 7 non-NF1 on Arm A, 3 non-NF1 on Arm B, and 5 NF1 on Arm A. CONCLUSIONS Non-NF1 patients treated with carboplatin and vincristine show statistically significant improved PFS compared to monthly carboplatin. Patients with NF1 are statistically underpowered due to low accrual.


Combining developmental and sleep health measures for autism spectrum disorder screening: an ECHO study

June 2024

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1 Citation

Pediatric Research

Background: Sleep problems are reported for up to 80% of autistic individuals. We examined whether parsimonious sets of items derived from the Modified Checklist for Autism in Toddlers, Revised (M-CHAT-R) and the Brief Infant Sleep Questionnaire (BISQ) are superior to the standard M-CHAT-R in predicting subsequent autism spectrum disorder (ASD) diagnoses. Methods: Participants from 11 Environmental influences on Child Health Outcomes (ECHO) cohorts were included. We performed logistic LASSO regression models with 10-fold cross-validation to identify whether a combination of items derived from the M-CHAT-R and BISQ are superior to the standard M-CHAT-R in predicting ASD diagnoses. Results: The final sample comprised 1552 children. The standard M-CHAT-R had a sensitivity of 44% (95% CI: 34, 55), specificity of 92% (95% CI: 91, 94), and AUROC of 0.726 (95% CI: 0.663, 0.790). A higher proportion of children with ASD had difficulty falling asleep or resisted bedtime during infancy/toddlerhood. However, LASSO models revealed parental reports of sleep problems did not improve the accuracy of the M-CHAT-R in predicting ASD diagnosis. Conclusion: While children with ASD had higher rates of sleep problems during infancy/toddlerhood, there was no improvement in ASD developmental screening through the incorporation of parent-report sleep metrics. Impact: Parental-reported sleep problems are common in autism spectrum disorder (ASD). We investigated whether the inclusion of parental-reports of infant/toddler sleep patterns enhanced the effectiveness of developmental screening for autism. We reported higher rates of difficulty falling asleep and resisting bedtime during infancy and toddlerhood among children later diagnosed with ASD; however, we did not find an improvement in ASD developmental screening through the incorporation of parent-report sleep metrics. In our sample, the standard M-CHAT-R had a sensitivity of 39% among children of mothers with government insurance compared with a sensitivity of 53% among children of mothers with employer-based insurance.


Figure 1. (a) Principal coordinates (PCoA) analysis of Bray-Curtis distances between samples based on amplicon sequence variants (ASVs) and (b) phylotypes demonstrating that using phylogenetic placement of ASVs on a reference tree removed a large degree of variation by site.
Figure 2. Community state types (CSTs) by ECHO cohort. CST I, Lactobacillus crispatus dominant; CST II, L. gasseri dominant; CST III, L. iners dominant; CST IV-B, diverse, characterized by high relative abundance of Gardnerella spp., low relative abundance of Candidatus Lachnocurva vaginae (formerly known as BVAB1), and moderate relative abundance of Fannyhessea vaginae (previously Atopobium vaginae); CST IV-C, diverse array of facultative and strictly anaerobic bacteria, with low relative abundance of Lactobacillus spp., G. vaginalis, Fannyhessea vaginae, and Ca. L. vaginae); CST V, L. jenseni dominant.
Overview of cohorts and collected samples. ATLANTA Emory Atlanta African American Maternal- Child Cohort, MAAP Microbes, Allergy, Asthma, and Pets, MARCH Michigan Archive for Research on Child Health, WISC Wisconsin Infant Study Cohort.
Host factors are independently associated with vaginal community state types in pregnancy. OR odds ratio, CI confidence interval, BA or higher college degree or higher, HS/GED high school or general equivalency degree. Multinomial logistic regression models. Reference is non-L. iners Lactobacillus dominant (I, II, V) community state type. Model 1 is adjusted for self- identified White race. Model 2 is adjusted for self-identified White race, host age. Model 3 is adjusted for self-identified White race, host age, educational attainment. Model 4 is adjusted for self-identified White race, host age, educational attainment, parity. Model 5 is adjusted for self-identified White race, host age, educational attainment, parity, and antibiotics use in pregnancy.
Host factors are associated with vaginal microbiome structure in pregnancy in the ECHO Cohort Consortium

May 2024

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310 Reads

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1 Citation

Using pooled vaginal microbiota data from pregnancy cohorts (N = 683 participants) in the Environmental influences on Child Health Outcomes (ECHO) Program, we analyzed 16S rRNA gene amplicon sequences to identify clinical and demographic host factors that associate with vaginal microbiota structure in pregnancy both within and across diverse cohorts. Using PERMANOVA models, we assessed factors associated with vaginal community structure in pregnancy, examined whether host factors were conserved across populations, and tested the independent and combined effects of host factors on vaginal community state types (CSTs) using multinomial logistic regression models. Demographic and social factors explained a larger amount of variation in the vaginal microbiome in pregnancy than clinical factors. After adjustment, lower education, rather than self-identified race, remained a robust predictor of L. iners dominant (CST III) and diverse (CST IV) (OR = 8.44, 95% CI = 4.06–17.6 and OR = 4.18, 95% CI = 1.88–9.26, respectively). In random forest models, we identified specific taxonomic features of host factors, particularly urogenital pathogens associated with pregnancy complications ( Aerococcus christensenii and Gardnerella spp.) among other facultative anaerobes and key markers of community instability ( L. iners ). Sociodemographic factors were robustly associated with vaginal microbiota structure in pregnancy and should be considered as sources of variation in human microbiome studies.


Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders

April 2024

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102 Reads

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10 Citations

Importance Chronic skin disorders in children frequently are visible and can cause stigmatization. However, the extent of stigmatization from chronic skin disease and association with mental health needs further study. Objective To examine the extent of stigma, dependence on disease visibility and severity, and association with mental health and quality of life (QOL) in chronic pediatric skin disease. Design, Setting, and Participants A cross-sectional, single-visit study was conducted at 32 pediatric dermatology centers in the US and Canada from November 14, 2018, to November 17, 2021. Participants included patients aged 8 to 17 years with chronic skin disease and 1 parent. Main Outcomes and Measures Using the Patient-Reported Outcomes Measurement Instrumentation System (PROMIS) Stigma-Skin, the extent of stigma with child-, caregiver-, and physician-assessed disease visibility (primary outcome) and severity was compared, as well as reduced QOL (assessed by Skindex-Teen), depression, anxiety, and poor peer relationships (PROMIS child and proxy tools) (secondary outcomes). Results The study included 1671 children (57.9% female; mean [SD] age, 13.7 [2.7] years). A total of 56.4% participants had self-reported high disease visibility and 50.5% had moderate disease severity. Stigma scores significantly differed by level of physician-assessed and child/proxy-assessed disease visibility and severity. Among children with chronic skin disorders, predominantly acne, atopic dermatitis, alopecia areata, and vitiligo, only 27.0% had T scores less than 40 (minimal or no stigma) and 43.8% had at least moderate stigma (T score ≥45) compared with children with a range of chronic diseases. Stigma scores correlated strongly with reduced QOL (Spearman ρ = 0.73), depression (ρ = 0.61), anxiety (ρ = 0.54), and poor peer relationships (ρ = −0.49). Overall, 29.4% of parents were aware of bullying of their child, which was strongly associated with stigma (Cohen d = −0.79, with children who were not bullied experiencing lower levels of stigma). Girls reported more stigma than boys (Cohen d = 0.26). Children with hyperhidrosis and hidradenitis suppurativa were most likely to have increased depression and anxiety. Conclusions and Relevance The findings of this study suggest that physician assessment of disease severity and visibility is insufficient to evaluate the disease impact in the patient/caregiver. Identifying stigmatization, including bullying, and tracking improvement through medical and psychosocial interventions may be a key role for practitioners.


Citations (71)


... Improvements in PROs were consistent with the improvements in efficacy throughout the MUsT. Depressive symptoms in children aged 5-11 years (as indicated by PROMIS PDS T-scores) were similar to those reported in children aged 8-12 years with skin disorders (child-reported mean of 48.4/parent-reported mean of 51.0) [21] and above the median observed in the general population (i.e., childreported median of 45 in the general pediatric population) [22]. Remarkably, depressive symptoms in children in our study improved from baseline levels that were indicative of mild depression (i.e., between 47.5 and 57.5 [23]) to levels approximately 1 SD below the baseline mean by week 2, with these reductions sustained through to week 52. ...

Reference:

A Maximum-Use Trial of Ruxolitinib Cream in Children Aged 2–11 Years with Moderate to Severe Atopic Dermatitis
Stigmatization and Mental Health Impact of Chronic Pediatric Skin Disorders
  • Citing Article
  • April 2024

... This finding is consistent with other research that found that increased neighborhood connectedness related to lower levels of depressive symptomology [92]. Additionally, other studies have found that aspects of green space and urban environment, indicators included in the neighborhood enrichment factors such as walkability and availability child education centers, related to reduced depressive and anxiety symptoms and mental wellbeing among youths [93,94]. One possible mechanism of this is that neighborhood enrichment may offer areas for children and youths to gather, which may promote social opportunities and encourage physical activity [95][96][97], which, in turn, may reduce the risk of symptoms associated with depression [98,99]. ...

Green Space and Internalizing or Externalizing Symptoms Among Children
  • Citing Article
  • April 2024

JAMA Network Open

... Finally, there were significant age-related differences in objective executive function (median [IQR] National Institutes of Health [NIH] toolbox score: younger 48 [35-63], middle-age 49 [38-63], older 54.5 [45-66.3]; p = 0.01), and working memory (median [IQR] NIH toolbox score: younger 47 [40-53], middle-age 50 [44-57], older 48 [ [43][44][45][46][47][48][49][50][51][52][53][54][55][56][57][58]; p = 0.0002) in NNP patients, with the worst performance coming from the younger group. Interpretation: Younger and middle-age individuals are disproportionally affected by Neuro-PASC regardless of acute COVID-19 severity. ...

Health system implementation of the PROMIS Cognitive Function Screener in the Medicare Annual Wellness Visit: framing as abilities versus concerns

Journal of Patient-Reported Outcomes

... 2 Psychological effects, including anxiety, depression, trauma, and distress, can result from the fear of recurrence or death or occur secondary to physical side effects or social/ practical issues surrounding employment, finances, and health insurance. [3][4][5][6] Physical effects of cancer stem from the disease itself and the treatment received (eg, bowel and urinary dysfunction after radiation to the pelvis). 7,8 Other common physical side effects include pain, fatigue, cognitive dysfunction, lymphedema, premature menopause/infertility, and sexual dysfunction. ...

Positive and negative psychosocial impacts on cancer survivors

... Power calculation indicated that a sample size of 36 provides 80% power to detect ICC ≥ 0.75 (null ICC = 0.50) using F-test at a significance level of 0.05 (two-sided). In power calculation for convergent validity, we assumed that the rank correlation coefficient (ρ) between a PROMIS EC PA summed score and accelerometer-measured MVPA would be moderate or higher (ρ ≥ 0.40), [19] as prior convergent validity studies among children reported correlation levels of 0.35-41 between a PA questionnaire (PAQ) and accelerometer-measured PA [37][38][39]. Power calculation indicated that a sample size of 51 provides 80% power to detect ρ ≥ 0.40, under the null hypothesis ρ = 0.00 at a significance level of 0.05 (two-sided). ...

Convergent Validity of the Patient Reported Outcome Measurement Information System-Pediatric Physical Activity Instrument (PROMIS®-PA) with Wearable Devices in Adolescents

Children

... The basic concept is that social factors (1), biological-genetic factors (2), and psychological factors (4) constitute a strong starting point and are the main factors that influence family condition-related factors (3). All of the above influence parenting style factors (5) and feeding and health related practices (6). Moreover, the above six concepts interconnect dynamically with the category of the consequences of the obesity (7), which leads to the perpetuation of the phenomenon of childhood obesity. ...

Perinatal Factors and Emotional, Cognitive, and Behavioral Dysregulation in Childhood and Adolescence
  • Citing Article
  • May 2023

Journal of the American Academy of Child & Adolescent Psychiatry

... Patients with chronic inflammatory skin diseases suffer from impaired sleep and fatigue. [1][2][3][4][5] Sleep quality is largely dependent on two sleep phases in particular, which may be affected by these diseases: Rapid Eye Movement (REM) sleep, also known as the dream sleep, which is essential for processing of sensory impressions and recovery and deep sleep (N3), which is fundamental for memory consolidation and cognitive performance. 6,7 improvement under treatment. ...

Prevalence and associations of fatigue in childhood atopic dermatitis: A cross‐sectional study
  • Citing Article
  • December 2022

Journal of the European Academy of Dermatology and Venereology

... These data are consistent with previous qualitative studies among patients and care partners that indicate support for routine cognitive screening and early detection of ADRD in primary care to facilitate future financial, living, and care arrangements. 22,23 This is encouraging given that previous survey studies report patient beliefs in the benefits of early detection is a significant predictor of cognitive screening behaviors. 24,25 Despite their familiarity with and positive perceptions of screening, only one in five older adults reported having received cognitive screening within the past year. ...

Patient, Family Caregiver, and Provider Perceptions on Self-Assessment Screening for Cognitive Impairment in Primary Care: Findings From a Qualitative Study

... These EMA time frames were chosen to be consistent with the 5 specific time periods specified in the YAP to support comparisons across measures. The selection of the time periods was also supported by the participants' preferences for responding to surveys in our prior qualitative study [24]. The EMA survey time frames were early morning, 6 to 8 a.m.; mid to late morning, 8 a.m. to 12 p.m.; early afternoon, 12 to 3 p.m.; late afternoon, 3 to 6 p.m.; and evening, 6 p.m. until your bedtime (Table A1 in Appendix C). ...

Enhancing the Content Validity of Self-Reported Physical Activity Self-Efficacy in Adolescents: A Qualitative Study
  • Citing Article
  • September 2022

Pediatric Physical Therapy