The study of psychosocial outcomes of parents bereaved by pediatric illness: a scoping review of methodology and sample composition.

OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.

Employing user-centered design to develop a remote technology kit for studying young children's social communication skills.

OBJECTIVE: The COVID-19 pandemic required behavioral researchers to rapidly pivot to the implementation of remote study protocols to facilitate data collection. Remote implementation required robust and flexible research protocols including reliable audio/visual technology that met all the quality, security, and privacy hallmarks of lab-based equipment, while also being portable and usable by nontechnical staff and participants. The project's primary purpose was to develop a technology kit that could be deployed for data collection in homes with young children. The secondary objective was to determine the feasibility of the kit for use longitudinally across four disparate sites. METHOD: User-centered design principles were employed in the development and implementation of a technology kit deployed across urban, suburban, and rural participant locations in four states. Preliminary feasibility and usability data were gathered to determine the reliability of the kit across three timepoints. RESULTS: In study 1, a technology kit was constructed addressing all project needs including the provision of the internet to connect remotely with participants. Staff training protocols and participant-facing materials were developed to accompany deployment procedures. In study 2, data gathered in technology logs demonstrated successful capturing of video footage in 96% of opportunities with most technology challenges mitigated. Subsequent behavioral coding indicated 100% of captured assessment footage has been successfully coded to date. Moreover, participants needed less support for technology setup at their later timepoints, and staff rated the kit as highly usable. CONCLUSION: This study offers a model for future development of technology use in remote community- and home-based pediatric research.

Bringing PROMIS to Early Childhood: Introduction and Qualitative Methods for the Development of Early Childhood Parent Report Instruments.

OBJECTIVE: Provide an overview of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Early Childhood Parent Report measurement development project and describe its qualitative methods. METHODS: The PROMIS Early Childhood (PROMIS EC) initiative used the PROMIS mixed-methods approach to patient-reported outcome development, with insight from the developmental specification framework to create parent report measures appropriate for assessing young children's health-related quality of life. Qualitative methods to develop these instruments included expert input, literature and measure review, and parent concept elicitation and cognitive interviews to confirm the measure frameworks, item understandability, and developmental appropriateness. RESULTS: Twelve measures resulted from the PROMIS EC initiative. These parent report instruments cover young children's physical, mental, and social health. CONCLUSIONS: The new PROMIS EC Parent Report instruments offer clinicians and researchers brief and psychometrically robust tools to evaluate young children's physical, mental, and social health outcomes. Aligned with the PROMIS Pediatric instruments, the early childhood versions enable coherent lifespan measurement starting at age 1 while maintaining developmental sensitivity.

Psychometric Considerations in Developing PROMIS® Measures for Early Childhood.

OBJECTIVE: The early expression of lifespan health and disease states can often be detected in early childhood. Currently, the Patient-Reported Outcome Measurement Information System (PROMIS®) includes over 300 measures of health for individuals ages 5 years and older. We extended PROMIS to early childhood by creating developmentally appropriate, lifespan coherent parent-report measures for 1-5-year-olds. This paper describes the psychometric approaches used for these efforts. METHODS: 2 waves of data from parents of children ages 1-5 were collected via 2 internet panel companies. Wave 1 data (n = 1,400) were used to evaluate item pool unidimensionality, model fit, and initial item parameters. Combined data from wave 1 and wave 2 (reference sample; n = 1,057) were used to estimate final item parameters. Using item response theory methods, we developed and tested 12 item pools: Global Health, Physical Activity, Sleep Disturbance, Sleep-related Impairment, Anger/Irritability, Anxiety, Depressive Symptoms, Positive Affect, Self-Regulation, Engagement, Family Relationships, and Peer Relationships. RESULTS: Wave 1 analyses supported the unidimensionality of Physical Activity, Positive Affect, Anger/Irritability, Anxiety, Depressive Symptoms, and Global Health. Family Relationships and Peer Relationships were combined to form "Social Relationships"; Sleep Disturbance and Sleep-related Impairment were combined to form "Sleep Problems." Self-Regulation was divided into "Flexibility" and "Frustration Tolerance"; Engagement was divided into "Curiosity" and "Persistence." Short forms were developed for item banks with more than 10 items; and. CONCLUSIONS: Using rigorous mixed-methods, we successfully extended PROMIS to early childhood (1-5-year-olds). Measures are now publicly available in English and Spanish (www.healthmeasures.net).

Research Priorities in Psychiatric Mental Health Nursing: Funding Availability, Recently Published Work, and Future Directions for Advancing Our Science.

BACKGROUND: Identifying and sharing psychiatric mental health (PMH) research priorities can help identify gaps in the literature, determine training needs for nurses, and assist investigators in locating funding. AIMS: The aims for this project included: (1) identify PMH nursing specialty research priorities from large, public funding entities; (2) compare the identified research priorities and scholarly articles published in 2020; and (3) outline future directions for advancing the science of PMH nursing. METHODS: Strategic plans of funding entities for PMH research were reviewed for research priorities. Summarized priorities were then compared with publications from peer-reviewed PMH nursing journals. Work conducted in the United States was extracted and categorized as original research, evidence-based practice (EBP), or quality improvement (QI), then design and population. RESULTS: Priorities from 13 funding entities comprised three domains (education, research, and practice), with nine areas, 30 topics, and subtopics. Eight journals produced 432 articles with 99 (23%) conducted in the United States. Among these journals, publications fitting research priorities ranged from 1 to 33 articles. Of the 99 articles, 85% were original research and 15% were either EBP or QI. Descriptive articles comprised 64% and 23% tested interventions. Populations studied included workforce; adults; infants, children, and adolescents; and parents. CONCLUSIONS: All published articles by the U.S. PMH nurses matched the funding priorities, but not all funding priorities were addressed by 2020 publications. The majority of work was conducted outside of the United States and most published from the United States was descriptive, contrary to many United States funders' priorities for interventional research.

Optimizing Recruitment of Black Adolescents into Behavioral Research: A Multi-Center Study.

OBJECTIVES: Adolescents of color are underrepresented in behavioral health research. Study aims were to quantify the amount and types of outreach effort needed to recruit young Black adolescents with type 1 diabetes and their primary caregiver into a clinical trial evaluating a parenting intervention and to determine if degree of recruitment difficulty was related to demographic, diabetes-related, or family characteristics. METHODS: Data were drawn from a multi-center clinical trial. Participants (N = 155) were recruited from seven pediatric diabetes clinics. Contact log data were used to quantify both number/type of contacts prior to study enrollment as well as length of time to enrollment. Families were coded as having expedited recruitment (ER) or prolonged recruitment (PR). Baseline study data were used to compare ER and PR families on sociodemographic factors, adolescent diabetes management and health status and family characteristics such as household organization and family conflict. RESULTS: Mean length of time to recruit was 6.6 months and mean number of recruitment contacts was 10.3. Thirty-nine percent of the sample were characterized as PR. These families required even higher levels of effort (mean of 9.9 months to recruit and 15.4 contacts). There were no significant between-group differences on any baseline variable for ER and PR families, with the exception of family income. CONCLUSIONS: Researchers need to make persistent efforts in order to successfully enroll adolescents of color and their caregivers into clinical trials. Social determinants of health such as family resources may differentiate families with prolonged recruitment within such samples.

Method Matters: Comparing Cancer-Related Adjustment of Siblings to Norms and Well-matched Peers.

OBJECTIVE: The purpose of this study was to better understand conflicting findings in the literature regarding the adjustment of siblings of children with cancer by examining, in a single sample, differences in patterns of results as a function of reporter and comparator used (i.e., population norms, demographically matched classmates). METHOD: Self- and parent-report standardized measures of depression, anxiety, and behavioral problems were collected for 67 siblings and 67 demographically matched classmates. Comparisons were made to norms and controls. RESULTS: Siblings consistently demonstrated poorer psychosocial functioning than their demographically matched peers across all measures but their scores did not differ from norms. A significantly greater percentage of siblings fell outside the normal range than that expected in the general population for parent-reported total and internalizing problems, but not for externalizing problems or the self-report measures. CONCLUSIONS: Findings regarding the psychological adjustment of siblings of children with cancer differ according to the research methods used. It is important to use rigorous methods such as demographically matched peer comparisons when investigating the impact of childhood cancer on siblings.

Teacher Versus Parent Informant Measurement Invariance of the Strengths and Difficulties Questionnaire.

BACKGROUND AND OBJECTIVES: Obtaining a multi-informant perspective is important when assessing mental health issues in childhood and adolescence. Obtaining ratings from both parents and teachers also facilitates the evaluation of similarities and contrasts in the nature and severity of symptoms across home and school contexts. However, these informants may differ in their interpretations of observed behaviors, raising questions about the validity of comparing parents' and teachers' ratings. METHODS: We evaluated the cross-informant measurement invariance of one of the most widely used measures of child and adolescent mental health: The Strengths and Difficulties Questionnaire (SDQ). Using data from the UK-population representative Millennium Cohort Study, we evaluated configural, metric, and scalar measurement invariance across parents and teachers when children were aged 7 (N = 10,221) and 11 (N = 10,543). RESULTS: Scalar measurement invariance held at both ages. Parents reported higher levels of symptoms in all domains measured at both ages as well as higher prosociality. CONCLUSIONS: For a UK sample, valid comparisons of parent and teacher SDQ ratings at ages 7 and 11 appear to be possible, facilitating the evaluation of contextual differences in child mental health problems. Further, parents report more problem and prosocial behavior in their children than teachers attribute to them.

Understanding Variation in Longitudinal Data Using Latent Growth Mixture Modeling.

OBJECTIVE: This article guides researchers through the process of specifying, troubleshooting, evaluating, and interpreting latent growth mixture models. METHODS: Latent growth mixture models are conducted with small example dataset of N = 117 pediatric patients using Mplus software. RESULTS: The example and data show how to select a solution, here a 3-class solution. We also present information on two methods for incorporating covariates into these models. CONCLUSIONS: Many studies in pediatric psychology seek to understand how an outcome changes over time. Mixed models or latent growth models estimate a single average trajectory estimate and an overall estimate of the individual variability, but this may mask other patterns of change shared by some participants. Unexplored variation in longitudinal data means that researchers can miss critical information about the trajectories of subgroups of individuals that could have important clinical implications about how one assess, treats, and manages subsets of individuals. Latent growth mixture modeling is a method for uncovering subgroups (or "classes") of individuals with shared trajectories that differ from the average trajectory.

Communication About Medication by Providers-Adolescent and Young Adult Version: Confirmatory Factor Analyses.

OBJECTIVE: To replicate the factor structure of a patient-report measure of provider communication about key medication prescription information, the Communication about Medication by Providers-Adolescent and Young Adult (CAMP-AYA) Version. We evaluated whether the 15-item, two-factor structure identified previously could be replicated via confirmatory factor analysis, and we also examined fit of unidimensional and bifactor models. Associations of CAMP-AYA Total and Factor Scores with provider satisfaction and select patient and medication characteristics were also examined. METHODS: Participants were 739 AYA (ages 18-25) who completed the CAMP-AYA, a provider satisfaction rating, and provided demographic and medication information. RESULTS: The bifactor model was best fitting (χ2 [75] = 689.60, p < .0001; root mean squared error of approximation = 0.11, 90% CI [0.10, 0.11]; Comparative Fit Index = 0.98; Tucker-Lewis Index = 0.98; Standardized Root Mean Square Residual Index = 0.02). Internal consistency reliabilities for Total and Factor Scores were high (αs > .89) and Total and Factor Scores were associated with provider satisfaction (ps < .001). CAMP-AYA scores varied as a function of type of prescription (short vs. long term; new vs. refill), with higher scores reported in the context of long term (>30-day course) or refilled prescriptions (ps < .007) in most cases. CONCLUSIONS: This study provides additional support for the reliability of the CAMP-AYA as a tool to assess AYA perceptions of provider key information coverage about medication prescriptions.

Maintaining Momentum in Infant Mental Health Research During COVID-19: Adapting Observational Assessments.

Understanding the potential effects of the COVID-19 pandemic on the developing parent-infant relationship is a priority, especially for medically-fragile infants and their caregivers who face distinct challenges and stressors. Observational assessments can provide important insights into parent-child behaviors and relational risk; however, stay-at-home directives and physical distancing measures associated with COVID-19 have significantly limited opportunities for in-person observational parent-infant assessment. To maintain momentum in our research program during the pandemic, we rapidly pivoted to remote, technology-assisted parent-infant observational assessments. In this commentary, we offer a series of strategies and recommendations to assist researchers in adapting observational parent-infant paradigms. We also discuss the benefits, challenges, and limitations of distance-delivered assessments, and offer considerations for clinical service provision and future research during and post the COVID-19 pandemic. .

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia.

OBJECTIVES: Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this. METHOD: The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators. RESULTS: Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators. CONCLUSIONS: The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

A Continuous Clustering Algorithm for Detection of Local Sleep in Humans.

OBJECTIVE: Research in animal models has shown that many EEG sleep features reflect local conditions, which is a consequence of relative inactivity of neuronal clusters. In humans, the authors previously reported that focal sleep patterns appear on the cortex during the wake state and suggested that this underlies the condition described as drowsiness. The focal changes at individual electrodes appeared as a combination of increased instantaneous amplitude in the delta band and decreased instantaneous frequency in the theta-alpha band during non-REM sleep, with the opposite occurring during the wake state, permitting their categorization as "active" and "inactive." A limitation of the previous work was the use of a binary k-means clustering algorithm, which created the possibility that the findings were biased toward a predominantly inactive state while the study subject was still awake. The present study tested the hypothesis that analyzing the same data by using a continuous rather than binary classifier would overcome this limitation. METHODS: An analysis was performed on records from six patients with refractory epilepsy who were undergoing video-electrocorticographic monitoring with implanted subdural grid electrodes. A fuzzy c-means clustering algorithm was utilized after feature extraction from the recordings to create state classifications for each moment in each recording. A subsequent analysis was performed to determine the relative contributions of instantaneous amplitude versus instantaneous frequency to the classification. RESULTS: Localized state changes consistent with the hypothesis were observed. The contributions from instantaneous frequency and amplitude appeared roughly equal. CONCLUSIONS: This study reveals evidence of local sleep during the wake state in humans.

Beck Depression Inventory-II: Self-report or interview-based administrations show different results in older persons.

ABSTRACTBeck Depression Inventory-II (BDI-II) is one of the most-used rating scales. It was developed as a tool administered either as a self-rating or interview-based, observer-rating scale. OBJECTIVE: The goal of this study is to compare BDI-II scores obtained with two standard methods of administration in community-based older persons. METHODS: BDI-II was administered at first in the self-rated version to a sample of 60 mentally healthy older persons (age 60-87 years). Afterward, the interview-based administration was performed. ANALYSES: We compared the scores with nonparametric tests - Spearman's correlation coefficient and Wilcoxon Signed Ranks test. We also computed internal consistency. RESULTS: Self-rated BDI-II yielded significantly higher total score than interview (p < 0.001, P = 88%). The correlation between total scores was moderate (rs = 0.46, p < 0.001). Item analysis revealed a larger decrease (lower scores) in the somatic items in the interview-based version. CONCLUSIONS: The two methods of administration result in different total score in healthy older persons. Therefore, interpretation of the scores should reflect the administration, which should be always specified in the studies.

Potential Bedside Utility of the Clock-Drawing Test in Evaluating Rapid Therapeutic Response in the Natural Course of Schizophrenia: A Preliminary Study.

The Clock-Drawing Test (CDT) is a brief, relatively time-efficient, easy to administer at bedside, and well-proven cognitive screening test that assesses a broad range of cognitive abilities in stroke, delirium, and dementia. However, challenges of comprehensive therapeutic outcome evaluations in schizophrenia can also be potentially overcome using CDT. The authors aimed to measure the therapeutic outcome using CDT in 101 schizophrenia patients, irrespective of their diagnostic subtypes. A repeated measures analysis of variance found that improvements on CDT and the Positive and Negative Syndrome Scale were closely correlated, reflecting critical information about therapeutic response measures in schizophrenia.

Focal Changes to Human Electrocorticography With Drowsiness: A Novel Measure of Local Sleep.

Drowsiness may be defined as the progressive loss of cortical processing efficiency that occurs with time passing while awake. This loss of cortical processing efficiency is reflected in focal changes to the electroencephalogram, including islands of increased delta power concurrent with drop-offs in neuronal activity (i.e., focal cortical inactivity). The authors hypothesized that these focal changes are evidenced at individual electrodes by combination of increased instantaneous amplitude in delta band and decreased instantaneous frequency in theta-alpha band, permitting their categorization as "active" and "inactive." An analysis of records from six patients with refractory epilepsy undergoing video-electrocorticographic monitoring was conducted. Feature extraction and state classification on multiple recordings revealed focal changes consistent with the hypothesis, as well as progressively increased numbers of inactive electrodes with time awake. The implications of these findings on the study of sleep, and particularly local sleep, are discussed.

A Novel Approach to Identifying a Neuroimaging Biomarker for Patients With Serious Mental Illness.

Serious mental illness (SMI) is disabling, and current interventions are ineffective for many. This exploratory study sought to demonstrate the feasibility of applying topological data analysis (TDA) to resting-state functional connectivity data obtained from a heterogeneous sample of 235 adult inpatients to identify a biomarker of treatment response. TDA identified two groups based on connectivity between the prefrontal cortex and striatal regions: patients admitted with greater functional connectivity between these regions evidenced less improvement from admission to discharge than patients with lesser connectivity between them. TDA identified a potential biomarker of an attenuated treatment response among inpatients with SMI. Insofar as the observed pattern of resting-state functional connectivity collected early during treatment is replicable, this potential biomarker may indicate the need to modify standard of care for a small, albeit meaningful, percentage of patients.

Dementia ascertainment using existing data in UK longitudinal and cohort studies: a systematic review of methodology.

BACKGROUND: Studies investigating the risk factors for or causation of dementia must consider subjects prior to disease onset. To overcome the limitations of prospective studies and self-reported recall of information, the use of existing data is key. This review provides a narrative account of dementia ascertainment methods using sources of existing data. METHODS: The literature search was performed using: MEDLINE, EMBASE, PsychInfo and Web of Science. Included articles reported a UK-based study of dementia in which cases were ascertained using existing data. Existing data included that which was routinely collected and that which was collected for previous research. After removing duplicates, abstracts were screened and the remaining articles were included for full-text review. A quality tool was used to evaluate the description of the ascertainment methodology. RESULTS: Of the 3545 abstracts screened, 360 articles were selected for full-text review. 47 articles were included for final consideration. Data sources for ascertainment included: death records, national datasets, research databases and hospital records among others. 36 articles used existing data alone for ascertainment, of which 27 used only a single data source. The most frequently used source was a research database. Quality scores ranged from 7/16 to 16/16. Quality scores were better for articles with dementia ascertainment as an outcome. Some papers performed validation studies of dementia ascertainment and most indicated that observed rates of dementia were lower than expected. CONCLUSIONS: We identified a lack of consistency in dementia ascertainment methodology using existing data. With no data source identified as a "gold-standard", we suggest the use of multiple sources. Where possible, studies should access records with evidence to confirm the diagnosis. Studies should also calculate the dementia ascertainment rate for the population being studied to enable a comparison with an expected rate.

Are we comparing frontotemporal dementia and Alzheimer disease patients with the right measures?

BACKGROUND: Clinical research studies of behavioral variant frontotemporal dementia (bvFTD) often use Alzheimer disease (AD) as a comparison group for control of dementia variables, using tests of cognitive function to match the groups. These two dementia syndromes, however, are very different in clinical manifestations, and the comparable severity of these dementias may not be reflected by commonly used cognitive scales such as the Mini-Mental State Examination (MMSE). METHODS: We evaluated different measures of dementia severity and symptoms among 20 people with bvFTD compared to 24 with early-onset AD. RESULTS: Despite similar ages, disease-duration, education, and cognitive performance on two tests of cognitive function, the MMSE and the Montreal Cognitive Assessment (MoCA), the bvFTD participants, compared to the AD participants, were significantly more impaired on other measures of disease severity, including function (Functional Assessment Questionnaire (FAQ)), neuropsychiatric symptoms (Neuropsychiatric Inventory (NPI)), and global dementia stage (Clinical Dementia Rating Scales (CDRs)). However, when we adjusted for the frontotemporal lobar degeneration-CDR (FTLD-CDR) in the analyses, the two dementia groups were comparable across all measures despite significant differences on the cognitive scales. CONCLUSION: We found tests of cognitive functions (MMSE and MoCA) to be insufficient measures for ensuring comparability between bvFTD and AD groups. In clinical studies, the FTLD-CDR, which includes additional language and behavior items, may be a better overall way to match bvFTD and AD groups on dementia severity.