Browsing by Subject "children"

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    Adolescents' and caregivers' perceptions of caregiver-provided testing and HIV self-testing using oral mucosal transudate tests in Zimbabwe: a short report.
    (AIDS care, 2020-04-16) Rainer, Crissi; Chihota, Belinda; Dziva Chikwari, Chido; McHugh, Grace; Dauya, Ethel; Mujuru, Hilda; Ferrand, Rashida A; Stewart, Kearsley A
    Uptake of HIV testing remains lower among children and adolescents compared to adults. This study explored adolescents' perceptions of HIV self-testing (HIVST) and caregivers' perceptions of testing their children using an oral mucosal transudate (OMT) rapid HIV test (caregiver-provided testing). We conducted 31 interviews with adolescents aged 16-18 years and caregivers of children aged 2-15 years who received an OMT test. Participants described barriers to HIV testing including lack of privacy and the potential for discrimination by community members towards children and adolescents who received an HIV test. Most participants felt caregiver-provided testing and HIVST could address these barriers through increased privacy. Some participants expressed worry about their ability to correctly perform the OMT and their anxious reactions to a positive result. Counseling and assistance from health care workers were viewed as ways to alleviate concerns. Concerns shaped participants' preferences for facility-based HIVST and caregiver-provided testing. Findings demonstrate HIVST performed by adolescents and caregiver-provided testing could increase the uptake of HIV testing. Concerns related to being able to test correctly and the availability of post-test counseling must be addressed in any future delivery mechanisms.
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    Establishment of biochemistry reference values for healthy Tanzanian infants, children and adolescents in Kilimanjaro Region.
    (Trop Med Int Health, 2015-11) Buchanan, Ann M; Fiorillo, Suzanne P; Omondi, Michael W; Cunningham, Coleen K; Crump, John A
    OBJECTIVE: To establish common biochemistry reference intervals for Tanzanian infants, children and adolescents living in the Kilimanjaro Region. METHODS: We recruited healthy, HIV-uninfected Tanzanian infants, children and youth between the ages of 1 month and 17 years from local schools and clinics to participate in this study. Only afebrile children without signs of physical or chronic illness were enrolled. Nonparametric methods were used to determine 95% reference limits and their 90% confidence intervals, with outliers removed by the Tukey method. RESULTS: A total of 619 healthy infants, children and adolescents were enrolled into the study. Twenty-three biochemistry parameters were measured. Compared to US reference intervals, several of the biochemistry parameters showed notable differences, namely alkaline phosphatase, phosphorus, amylase and lipase. Comparing our data to the US National Institutes of Health (NIH) Division of AIDS (DAIDS) grading criteria for classification of adverse events, we found that for selected parameters, up to 15% of infants or children in certain age groups would have been categorised as having an adverse event as defined by DAIDS. CONCLUSIONS: Our study further confirms the need to use locally established reference intervals to define reference laboratory parameters among children in Africa, rather than relying on those derived from US or European populations. To our knowledge, this study provides the first set of locally validated biochemistry reference ranges for a paediatric population in Tanzania.
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    Feasibility of salivary DNA collection in a population-based case-control study: a pilot study of pediatric Crohn's disease.
    (Clinical epidemiology, 2018-01) Kappelman, Michael D; Lange, Aksel; Randell, Rachel L; Basta, Patricia V; Sandler, Robert S; Laugesen, Kristina; Byrjalsen, Anna; Christensen, Tina; Frøslev, Trine; Erichsen, Rune

    Background

    Epidemiologic studies combining exposure and outcome data with the collection of biosamples are needed to study gene-environment interactions that might contribute to the etiology of complex diseases such as pediatric Crohn's disease (CD). Nationwide registries, including those in Denmark and other Scandinavian countries, provide efficient and reliable sources of data for epidemiological studies evaluating the environmental determinants of disease. We performed a pilot study to test the feasibility of collecting salivary DNA to augment registry data in established cases of pediatric CD and randomly selected, population-based controls.

    Subjects and methods

    Cases of CD born after 1995 and residing in the central region of Denmark were identified through the Danish National Patient Registry and confirmed by using standard diagnostic criteria. Age- and gender-matched controls were selected at random through the civil registration system. Cases and controls were contacted by mail and telephone and invited to submit a saliva sample. DNA was extracted and genotyped for six CD-associated single-nucleotide polymorphisms (SNPs).

    Results

    A total of 53 cases of pediatric CD were invited, and 40 contributed a saliva sample (75% response rate). A total of 126 controls were invited, and 54 contributed a saliva sample (44% response rate). As expected, demographic characteristics did not differ between cases and controls. DNA was successfully isolated from 93 of 94 samples. Genotyping was performed with only 2% undetermined genotypes. For five of six SNPs known to be associated with CD, risk allele frequencies were higher in cases than controls.

    Conclusion

    This pilot study strongly supports the feasibility of augmenting traditional epidemiological data from Danish population-based registries with the de novo collection of genetic information from population-based cases and controls. This will facilitate rigorous studies of gene-environment interactions in complex chronic conditions such as CD.
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    Molecular variants and mutations in medulloblastoma.
    (Pharmgenomics Pers Med, 2014) Schroeder, Kristin; Gururangan, Sri
    Medulloblastoma is the commonest malignant brain tumor in children. Treatment with surgery, irradiation, and chemotherapy has improved outcomes in recent years, but patients are frequently left with devastating neurocognitive and other sequelae following such therapy. While the prognosis has traditionally been based on conventional histopathology and clinical staging (based on age, extent of resection, and presence or absence of metastasis), it has become apparent in recent years that the inherent biology of the tumor plays a significant part in predicting survival and sometimes supersedes clinical or pathologic risk factors. The advent of deep sequencing gene technology has provided invaluable clues to the molecular makeup of this tumor and allowed neuro-oncologists to understand that medulloblastoma is an amalgamation of several distinct disease entities with unique clinical associations and behavior. This review is a concise summary of the pathology, genetic syndromes, recent advances in molecular subgrouping, and the associated gene mutations and copy number variations in medulloblastoma. The association of molecular alterations with patient prognosis is also discussed, but it should be remembered that further validation is required in prospective clinical trials utilizing uniform treatment approaches.
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    Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.
    (American journal on intellectual and developmental disabilities, 2023-05) Zigler, Christina K; Lin, Li; McFatrich, Molly; Lucas, Nicole; Gordon, Kelly L; Jones, Harrison N; Berent, Allyson; Panagoulias, Jennifer; Evans, Paula; Reeve, Bryce B
    There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Reported Communication Ability (ORCA) measure using best practice guidelines, with the goal of developing a measure that could be administered to caregivers directly without the need for a certified administrator for use in clinical trials. To refine the draft measure, we conducted two rounds of cognitive interviews with 24 caregivers and a quantitative study including 249 caregivers. The results from both studies support the overall content validity, construct validity, and the reliability of the ORCA measure for individuals with AS > 2 years old for use in research contexts. Future work should explore the responsiveness of ORCA measures to changes over time in a diverse sample.