"How Is My Child's Asthma?" Digital Phenotype and Actionable Insights for Pediatric Asthma.
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ABSTRACT:
SUBMITTER: Jaimini U
PROVIDER: S-EPMC6469868 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:OBJECTIVE:Parents' emotional, cognitive, and behavioral responses are highly influential on children's pain and functional outcomes. One important response to pediatric pain is acceptance: the degree to which an individual participates in routine daily activities in the presence of pain and is willing to let pain be a part of their life without efforts to control or avoid it. However, no tool currently exists to assess parents' own acceptance of their child's pain. The aim of this study was to validate the Parent Pain Acceptance Questionnaire (PPAQ). MATERIALS AND METHODS:The PPAQ was administered to 310 parents of youth with chronic pain in an outpatient pediatric headache program and a day hospital pain rehabilitation program. An exploratory factor analysis revealed 2 factors for the PPAQ: an 11-item Activity Engagement scale and a 4-item Acceptance of Pain-related Thoughts and Feelings scale. RESULTS:The PPAQ total score and subscales demonstrated strong internal consistency. Greater parent pain acceptance was positively associated with child pain acceptance, and was negatively correlated with parent protective behaviors, parent minimizing behaviors, parent and child pain catastrophizing, and child fear of pain. Parent protective behaviors and child pain acceptance both served as mediators of the relationship between parent pain acceptance and child functional disability. CONCLUSIONS:The PPAQ is a valid measure of parent pain acceptance and may provide valuable insights into parent responses to child pain and the ways in which parent acceptance influences child outcomes. Clinical implications and suggestions for future research are discussed.
| S-EPMC4326631 | biostudies-literature
Project description:This study aimed to explore user engagement with 'My Breathing Matters', a digital self-management intervention for asthma, and identify factors that may influence engagement. In a mixed methods design, adults with asthma allocated to the intervention arm of a feasibility trial (n = 44) participated in semi-structured interviews (n = 18) and a satisfaction questionnaire (n = 36) to explore their views and experiences of the intervention. Usage data highlighted that key intervention content was delivered to most users. The majority of questionnaire respondents (78%; n = 28) reported they would recommend the intervention to friends and family. Interviewees expressed positive views of the intervention and experienced several benefits, mainly improved asthma control, medication use, and breathing technique. Factors that may influence user engagement were identified, including perceptions of asthma control, current self-management practices, and appeal of the target behaviours and behaviour change techniques. Findings suggested My Breathing Matters was acceptable and engaging to participants, and it was used as intended.
| S-EPMC8178311 | biostudies-literature
Project description:ObjectiveTo assess the feasibility of a randomised controlled trial (RCT) and acceptability of an asthma self-management digital intervention to improve asthma-specific quality of life in comparison with usual care.Design and settingA two-arm feasibility RCT conducted across seven general practices in Wessex, UK.ParticipantsPrimary care patients with asthma aged 18 years and over, with impaired asthma-specific quality of life and access to the internet.Interventions'My Breathing Matters' (MBM) is a digital asthma self-management intervention designed using theory, evidence and person-based approaches to provide tailored support for both pharmacological and non-pharmacological management of asthma symptoms.OutcomesThe primary outcome was the feasibility of the trial design, including recruitment, adherence and retention at follow-up (3 and 12 months). Secondary outcomes were the feasibility and effect sizes of specific trial measures including asthma-specific quality of life and asthma control.ResultsPrimary outcomes: 88 patients were recruited (target 80). At 3-month follow-up, two patients withdrew and six did not complete outcome measures. At 12 months, two withdrew and four did not complete outcome measures. 36/44 patients in the intervention group engaged with MBM (median of 4 logins, range 0-25, IQR 8). Consistent trends were observed to improvements in asthma-related patient-reported outcome measures.ConclusionsThis study demonstrated the feasibility and acceptability of a definitive RCT that is required to determine the clinical and cost-effectiveness of a digital asthma self-management intervention.Trial registration numberISRCTN15698435.
| S-EPMC6858238 | biostudies-literature
Project description: Not available
| S-EPMC7606382 | biostudies-literature
Project description:Digital phenotyping has potential to quantify the lived experience of mental illness and generate real-time, actionable results related to recovery, such as the case of social rhythms in individuals with bipolar disorder. However, passive data features for social rhythm clinical targets in individuals with schizophrenia have yet to be studied. In this paper, we explore the relationship between active and passive data by focusing on temporal stability and variance at an individual level as well as large-scale associations on a population level to gain clinically actionable information regarding social rhythms. From individual data clustering, we found a 19% cluster overlap between specific active and passive data features for participants with schizophrenia. In the same clinical population, two passive data features in particular associated with social rhythms, "Circadian Routine" and "Weekend Day Routine," and were negatively associated with symptoms of anxiety, depression, psychosis, and poor sleep (Spearman ? ranged from -0.23 to -0.30, p?<?0.001). Conversely, in healthy controls, more stable social rhythms were positively correlated with symptomatology (Spearman ? ranged from 0.20 to 0.44, p?<?0.05). Our results suggest that digital phenotyping in schizophrenia may offer clinically relevant information for understanding how daily routines affect symptomatology. Specifically, negative correlations between smartphone reported anxiety, depression, psychosis, and poor sleep in individuals with schizophrenia, but not in healthy controls, offer an actionable clinical target and area for further investigation.
| S-EPMC7200667 | biostudies-literature
Project description:Rationale: Obesity-related asthma disproportionately affects minority children and is associated with nonatopic T-helper type 1 (Th1) cell polarized inflammation that correlates with pulmonary function deficits. Its underlying mechanisms are poorly understood.Objectives: To use functional genomics to identify cellular mechanisms associated with nonatopic inflammation in obese minority children with asthma.Methods: CD4+ (cluster of differentiation 4-positive) Th cells from 59 obese Hispanic and African American children with asthma and 61 normal-weight Hispanic and African American children with asthma underwent quantification of the transcriptome and DNA methylome and genotyping. Expression and methylation quantitative trait loci revealed the contribution of genetic variation to transcription and DNA methylation. Adjusting for Th-cell subtype proportions discriminated loci where transcription or methylation differences were driven by differences in subtype proportions from loci that were independently associated with obesity-related asthma.Measurements and Main Results: Obese children with asthma had more memory and fewer naive Th cells than normal-weight children with asthma. Differentially expressed and methylated genes and methylation quantitative trait loci in obese children with asthma, independent of Th-cell subtype proportions, were enriched in Rho-GTPase pathways. Inhibition of CDC42 (cell division cycle 42), one of the Rho-GTPases associated with Th-cell differentiation, was associated with downregulation of the IFNγ, but not the IL-4, gene. Differential expression of the RPS27L (40S ribosomal protein S27-like) gene, part of the p53/mammalian target of rapamycin pathway, was due to nonrandom distribution of expression quantitative trait loci variants between groups. Differentially expressed and/or methylated genes, including RPS27L, were associated with pulmonary function deficits in obese children with asthma.Conclusions: We found enrichment of Rho-GTPase pathways in obese asthmatic Th cells, identifying them as a novel therapeutic target for obesity-related asthma, a disease that is suboptimally responsive to current therapies.
| S-EPMC7365356 | biostudies-literature
Project description:BackgroundExtensive data available in electronic health records (EHRs) have the potential to improve asthma care and understanding of factors influencing asthma outcomes. However, this work can be accomplished only when the EHR data allow for accurate measures of severity, which at present are complex and inconsistent.ObjectiveOur aims were to create and evaluate a standardized pediatric asthma severity phenotype based in clinical asthma guidelines for use in EHR-based health initiatives and studies and also to examine the presence and absence of these data in relation to patient characteristics.MethodsWe developed an asthma severity computable phenotype and compared the concordance of different severity components contributing to the phenotype to trends in the literature. We used multivariable logistic regression to assess the presence of EHR data relevant to asthma severity.ResultsThe asthma severity computable phenotype performs as expected in comparison with national statistics and the literature. Severity classification for a child is maximized when based on the long-term medication regimen component and minimized when based only on the symptom data component. Use of the severity phenotype results in better, clinically grounded classification. Children for whom severity could be ascertained from these EHR data were more likely to be seen for asthma in the outpatient setting and less likely to be older or Hispanic. Black children were less likely to have lung function testing data present.ConclusionWe developed a pragmatic computable phenotype for pediatric asthma severity that is transportable to other EHRs.
| S-EPMC8328264 | biostudies-literature
Project description:ObjectivesPost-traumatic stress disorder, depression, and anxiety have all been found in parents of PICU survivors. How these research findings translate to actual use of mental health services by parents remains unknown.DesignRetrospective observational cohort study.SettingInsurance claims data from 2006 to 2013 obtained from the IBM MarketScan Commercial Database.PatientsParents of PICU survivors.InterventionsWe examined rates of: 1) mental health diagnoses, 2) outpatient mental health visits, and 3) prescriptions for antidepressants and anxiolytics among parents, 6 months before and 6 months after their child's PICU admission, using each parent as their own control.Measurements and main resultsOf the 95,070 parents identified, 9.5% received a new mental health diagnosis in the 6 months after their child's PICU hospitalization, which represented a 110% increase from pre-PICU rates. A smaller proportion of parents were given new prescriptions for antidepressants (3.4%) and anxiolytics (3.9%) in the 6 months after their child's PICU hospitalization. Mothers were twice as likely to receive a new mental health diagnosis and be taking a new medication than fathers in the post-PICU period. The parental diagnosis of acute stress disorder or post-traumatic stress disorder increased by 87% from the pre-PICU to the post-PICU period.ConclusionsAfter their child's PICU hospitalization, the proportion of parents with a new mental health diagnosis nearly doubled. Mothers were at nearly twice the risk of receiving a new mental health diagnosis and receiving a new mental health medication compared with fathers. The proportion of parents receiving mental healthcare is much lower than the proportion reporting mental health symptoms in long-term outcomes studies. Whether this indicates a gap in healthcare delivery for parents with mental health symptoms remains unknown.
| S-EPMC7609586 | biostudies-literature
Project description:IntroductionThe Zika virus outbreak in Brazil has had devasting social, medical and financial consequences for families. Both researchers and clinicians are measuring longer-term outcomes to understand the impact of the Zika on child development, functioning and disability. Outcomes and tools used to measure them are very varied and we are unclear how meaningful they are to families and children. This study aimed to identify the parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with congenital Zika syndrome (CZS), as guided by the International Classification of Functioning, Disability and Health (ICF).MethodsThis qualitative study included parents or caregivers of children aged 0-5 years with confirmed CZS from two states in northeastern Brazil. Interviews were conducted using focus groups. Content mapping followed the WHO's ICF linking rules. Three raters analysed the content using NVivo V.11.ResultsThirty-two caregivers participated in six focus groups, 88% were mothers with an average age of 30 years. Most children were male (59%) and all were level V (severe) to on the Gross Motor Function Classification System (GMFCS). Overall, 825 themes were mapped to 36 ICF categories. Although parents mentioned areas across all ICF domains, they reported that areas of mobility, eating and recreation were most relevant for them. In addition, environmental factors were highly identified as barriers, specifically services, policies and access to assistive devices. The most predominant facilitators within the environment were; immediate family support, kind relationships with therapists and support from the extended family.ConclusionsAlthough parents emphasised issues related to mobility, their greatest concerns involved environmental factors, such as access and quality of health and social services, systems and policies. These results reinforce the importance of including parents' perspectives when selecting or developing outcome measures for CZS.
| S-EPMC7713226 | biostudies-literature
Project description:A child's 'concept of pain' refers to how they understand what pain actually is, what function pain serves, and what biological processes are thought to underpin it. We aimed to determine pediatric pain experts' opinions of: (1) the importance and usefulness of assessing a child's concept of pain in clinical and/or research settings; (2) the usefulness of the content of items within currently published adult-targeted resources for assessing a child's concept of pain; and (3) important domains of a child's concept of pain to assess. Forty-nine pediatric pain experts (response rate = 75.4%) completed an online survey. Descriptive statistics and frequency of responses were analyzed. Experts from all included disciplines reported that assessing a child's concept of pain is important and useful both clinically and in a research setting (>80% reported very or extremely useful for each item). Experts considered that the content of 13 items from currently published adult-targeted resources was useful, but the wording was too complex for children aged 8-12 years. Experts considered that all seven of the proposed domains of a child's concept of pain was important to assess. The findings can be used to inform the development of an assessment tool for a child's concept of pain.
| S-EPMC5789294 | biostudies-literature