Abstract Customizing participation-focused pediatric rehabilitation interventions is an important but also complex and potentially resource intensive process, which may benefit from automated and simplified steps. This research aimed at applying natural language processing to develop and identify a best performing predictive model that classifies caregiver strategies into participation-related constructs, while filtering out non-strategies. We created a dataset including 1,576 caregiver strategies obtained from 236 families of children and youth (11–17 years) with craniofacial microsomia or other childhood-onset disabilities. These strategies were annotated to four participation-related constructs and a non-strategy class. We experimented with manually created features (i.e., speech and dependency tags, predefined likely sets of words, dense lexicon features (i.e., Unified Medical Language System (UMLS) concepts)) and three classical methods (i.e., logistic regression, naïve Bayes, support vector machines (SVM)). We tested a series of binary and multinomial classification tasks applying 10-fold cross-validation on the training set (80%) to test the best performing model on the held-out test set (20%). SVM using term frequency-inverse document frequency (TF-IDF) was the best performing model for all four classification tasks, with accuracy ranging from 78.10 to 94.92% and a macro-averaged F1-score ranging from 0.58 to 0.83. Manually created features only increased model performance when filtering out non-strategies. Results suggest pipelined classification tasks (i.e., filtering out non-strategies; classification into intrinsic and extrinsic strategies; classification into participation-related constructs) for implementation into participation-focused pediatric rehabilitation interventions like Participation and Environment Measure Plus (PEM+) among caregivers who complete the Participation and Environment Measure for Children and Youth (PEM-CY).
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Diversified caregiver input to upgrade the Young Children’s Participation and Environment Measure for equitable pediatric re/habilitation practice
Practitioner and family experiences of pediatric re/habilitation can be inequitable. The Young Children’s Participation and Environment Measure (YC-PEM) is an evidence-based and promising electronic patient-reported outcome measure that was designed with and for caregivers for research and practice. This study examined historically minoritized caregivers’ responses to revised YC-PEM content modifications and their perspectives on core intelligent virtual agent functionality needed to improve its reach for equitable service design.
Caregivers were recruited during a routine early intervention (EI) service visit and met five inclusion criteria: (1) were 18 + years old; (2) identified as the parent or legal guardian of a child 0–3 years old enrolled in EI services for 3 + months; (3) read, wrote, and spoke English; (4) had Internet and telephone access; and (5) identified as a parent or legal guardian of a Black, non-Hispanic child or as publicly insured. Three rounds of semi-structured cognitive interviews (55–90 min each) used videoconferencing to gather caregiver feedback on their responses to select content modifications while completing YC-PEM, and their ideas for core intelligent virtual agent functionality. Interviews were transcribed verbatim, cross-checked for accuracy, and deductively and inductively content analyzed by multiple staff in three rounds.
Eight Black, non-Hispanic caregivers from a single urban EI catchment and with diverse income levels (
Results indicate four ways that YC-PEM content will be modified to strengthen how providers screen for unmet participation needs and determinants to design pediatric re/habilitation services that are responsive to family priorities. Results also motivate the need for user-centered design of an intelligent virtual agent to strengthen user navigation, prior to undertaking a community-based pragmatic trial of its implementation for equitable practice.
- Award ID(s):
- 2125411
- NSF-PAR ID:
- 10448346
- Publisher / Repository:
- Springer Science + Business Media
- Date Published:
- Journal Name:
- Journal of Patient-Reported Outcomes
- Volume:
- 7
- Issue:
- 1
- ISSN:
- 2509-8020
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Abstract Background Pediatric hematopoietic stem cell transplantation (HCT) is an intensive medical procedure that places substantial financial and logistical burdens on families and is associated with significant health risks, such as graft‐versus‐host disease (GVHD), and infections. The influence of the social determinants of health (SDoH) on outcomes following pediatric HCT is understudied. This study aimed to examine whether SDoH predicts outcomes following pediatric HCT.
Procedure Data were collected from 84 children who received HCT (
M age = 5.8 years, SD = 3.7) and their primary caregiver. Detailed demographic information was collected from caregivers at baseline, and child health information was extracted from the electronic medical records. Multivariate logistic regression was used to examine the association between SDoH and health outcomes within a 24‐month period following pediatric HCT.Results After controlling for malignancy as reason for transplant and donor type, lower family income predicted the incidence of chronic GVHD. Neighborhood deprivation, total family income, public health insurance, caregiver relationship status, caregiver educational attainment, and perceived family financial difficulties did not predict acute GVHD or the number of infections.
Conclusions Total family income is a simple family indicator of SDoH that predicts chronic GVHD after pediatric allogeneic HCT. These findings provide further support for the importance of screening of child and family SDoH risks to ensure that fundamental needs can be met to mitigate potential health disparities for up to 2 years following pediatric HCT.
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Policy Points Suboptimal intake of fruit and vegetables is associated with increased risk of diet‐related diseases. A national retail‐based fruit and vegetable subsidy program could broadly benefit the health of the entire population.
Existing fruit and vegetable subsidy programs can inform potential implementation mechanisms; Congress's powers to tax, spend, and regulate interstate commerce can be leveraged to create a federal program.
Legal and administrative feasibility considerations support a conditional funding program or a federal‐state cooperative program combining regulation, licensing, and state or local options for flexible implementation strategies. Strategies to engage key stakeholders would enable the program to utilize lessons learned from existing programs.
Context Suboptimal intake of fruit and vegetables (F&Vs) is associated with increased risk of diet‐related diseases. Yet, there are no US government programs to support increased F&V consumption nationally for the whole population, most of whom purchase food at retail establishments. To inform policy discussion and implementation, we identified mechanisms to effectuate a national retail‐based F&V subsidy program.
Methods We conducted legal and policy research using LexisNexis, the UConn Rudd Center Legislation Database, the Centers for Disease Control and Prevention Chronic Disease State Policy Tracking System, the US Department of Agriculture's website, Congress.gov, gray literature, and government reports. First, we identified existing federal, state, local, and nongovernmental organization (NGO) policies and programs that subsidize F&Vs. Second, we evaluated Congress's power to implement a national retail‐based F&V subsidy program.
Findings We found five federal programs, three federal bills, four state laws, and 17 state (including the District of Columbia [DC]) bills to appropriate money to supplement federal food assistance programs with F&Vs; 74 programs (six multistate, 22 state [including DC], and 46 local) administered by state and local governments and NGOs that incentivize the purchase of F&Vs for various subpopulations; and two state laws and 11 state bills to provide tax exemptions for F&Vs. To create a national F&V subsidy program, Congress could use its Commerce Clause powers or its powers to tax or spend, through direct regulation, licensing, taxation, tax incentives, and conditional funding. Legal and administrative feasibility considerations support a voluntary conditional funding program or, as a second option, a mandatory federal‐state cooperative program combining regulation and licensing.
Conclusions Multiple existing programs provide an important foundation to inform potential implementation mechanisms for a national F&V subsidy program. Results also highlight the value of state and local participation to leverage existing networks and stakeholder knowledge.
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Abstract Background Epigenetic age acceleration (EAA) and epigenetic gestational age acceleration (EGAA) are biomarkers of physiological development and may be affected by the perinatal environment. The aim of this study was to evaluate performance of epigenetic clocks and to identify biological and sociodemographic correlates of EGAA and EAA at birth and in childhood. In the Project Viva pre-birth cohort, DNA methylation was measured in nucleated cells in cord blood (leukocytes and nucleated red blood cells, N = 485) and leukocytes in early (N = 120, median age = 3.2 years) and mid-childhood (N = 460, median age = 7.7 years). We calculated epigenetic gestational age (EGA; Bohlin and Knight clocks) and epigenetic age (EA; Horvath and skin & blood clocks), and respective measures of EGAA and EAA. We evaluated the performance of clocks relative to chronological age using correlations and median absolute error. We tested for associations of maternal-child characteristics with EGAA and EAA using mutually adjusted linear models controlling for estimated cell type proportions. We also tested associations of Horvath EA at birth with childhood EAA.
Results Bohlin EGA was strongly correlated with chronological gestational age (Bohlin EGA
r = 0.82,p < 0.001). Horvath and skin & blood EA were weakly correlated with gestational age, but moderately correlated with chronological age in childhood (r = 0.45–0.65). Maternal smoking during pregnancy was associated with higher skin & blood EAA at birth [B (95% CI) = 1.17 weeks (− 0.09, 2.42)] and in early childhood [0.34 years (0.03, 0.64)]. Female newborns and children had lower Bohlin EGAA [− 0.17 weeks (− 0.30, − 0.04)] and Horvath EAA at birth [B (95% CI) = − 2.88 weeks (− 4.41, − 1.35)] and in childhood [early childhood: − 0.3 years (− 0.60, 0.01); mid-childhood: − 0.48 years (− 0.77, − 0.18)] than males. When comparing self-reported Asian, Black, Hispanic, and more than one race or other racial/ethnic groups to White, we identified significant differences in EGAA and EAA at birth and in mid-childhood, but associations varied across clocks. Horvath EA at birth was positively associated with childhood Horvath and skin & blood EAA.Conclusions Maternal smoking during pregnancy and child sex were associated with EGAA and EAA at multiple timepoints. Further research may provide insight into the relationship between perinatal factors, pediatric epigenetic aging, and health and development across the lifespan.
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Abstract This paper outlines the potential gains for Constructionist research and praxis in modelling that might be obtained by recognising the power of the Patch—a humble computational being in the NetLogo modelling environment that has been overshadowed by its more popular fellow agent, the Turtle. To contextualise this opportunity, I describe how Constructionist modelling has thrived by promoting forms of learning that rely on learners’ identifying with agents. I argue that patches are a neglected agent type in this multi‐agent modelling tradition, and that the possibilities for learners to adopt the patch perspective in support of exploratory forms of modelling and aesthetic expression have been under‐researched. Nevertheless, I show there are a variety of powerful ways for learners––both individually and in groups––to identify with patches. I describe ongoing research showing how taking an aesthetic approach to patches has the potential to support individuals and groups in powerful forms of learning with and about multi‐agent modelling.
Practitioner notes What is already known about this topic
Turtles (movable agents in Logo and Constructionist environments descended from Logo) can be ‘transitional objects’ that provide learners a way to make powerful ideas their own.
These agents can be powerful ‘objects‐to‐think‐with’ in large part because they encourage learners to identify with them in a form of learning known as ‘syntonic learning’.
Expressive activities that draw on learners’
aesthetic interests can support their learning with and about computational representations.Multi‐agent modelling is a powerful extension of Logo‐based learning environments that provides access to powerful ideas about complex systems and their emergent properties.
In the multi‐agent setting, individual learners and/or groups of learners can identify syntonically with agents to provide entry points for reasoning about complexity.
What this paper adds
Patches (non‐movable agents in the NetLogo modelling environment) are under‐represented in the research on multi‐agent modelling, and the potential for learners to adopt the patches’ perspective has been neglected.
An aesthetically driven approach to patches can ground students’ understanding of their expressive value.
Participatory activities in which learners play the role of patches (called ‘Stadium Card’ activities) can ground the patch perspective, so that learners can achieve a form of syntonicity and/or collectively adopt the perspective of patches in the aggregate.
Participatory activities that blend intrinsic and extrinsic perspectives on the patch grid can further enhance learners’ facility with programming for patches and their understanding of patches’ collective expressive power.
Implications for practice and/or policy
Balancing the focus between turtles and patches can enrich the modelling toolbox of learners new to agent‐based modelling.
Patches
do capture important aspects of individual and collective experience, and so can be good objects‐to‐think‐with, especially when conceptualising phenomena at a larger scale.The expressive potential of the patch grid is an important topic for computer science as well (eg, through 2D cellular automata). This is a rich context for learning in itself, which can be made accessible to groups of learners through physical or virtual participatory role‐play.
Moreover, physical or virtual grids of people‐patches may exhibit novel aggregate computational properties that could in turn become interesting areas for research in computer science.
