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1.
J Genet Couns ; 32(2): 486-494, 2023 04.
Article in English | MEDLINE | ID: mdl-36458380

ABSTRACT

Cystic fibrosis (CF), a genetic disease and chronic illness, affects multiple organ systems and requires exceptional medical care and treatment. Few studies have assessed the diagnosis disclosure process to well children when their sibling(s) have CF, and none have evaluated the association between parental knowledge of CF and the disclosure of CF. The objectives of this study were to assess parental understanding of CF, demonstrate the most commonly shared topics and their frequencies of discussion with well children, and identify associations between parental understanding of CF and aspects of the disclosure process to well children. Parents were recruited from CF support organizations and asked to complete an online, anonymous survey. Individuals were eligible to participate in the study if they had at least one living child with CF and at least one living child without CF. Completed surveys from 48 individuals revealed that most parents began discussing a sibling's diagnosis of CF with the first-born well child at 5.4 years old. Topics related to CF were discussed openly and as needed with their well children (n = 44). The most frequently discussed topic, and the topic ranked most important (1.93 of 5, SD: 1.17) by 40 participants (90.9%), was medical concerns and treatment for CF. Fewer parents (n = 18, 40.9%) reported discussing the financial impact of CF, and many ranked this as least important to share (4.64 of 5, SD: 0.75). The CF knowledge assessment revealed that participants were well-informed about CF, with a mean total score of 8.9/10 (SD: 0.91). There were no associations between CF knowledge assessment scores, education level, income, and the topics discussed with well children. These results can be utilized by genetic counselors and other healthcare specialists in discussion with parents about the disclosure process of a diagnosis of CF to well children.


Subject(s)
Counselors , Cystic Fibrosis , Humans , Child , Child, Preschool , Cystic Fibrosis/diagnosis , Cystic Fibrosis/genetics , Disclosure , Parents/education , Surveys and Questionnaires
2.
Nutr Cancer ; 74(3): 816-819, 2022.
Article in English | MEDLINE | ID: mdl-34615429

ABSTRACT

Chronically elevated levels of inflammatory biomarkers may contribute to the development of cancer and diet may be an important factor in the interplay between inflammation and cancer. We examined associations between glycemic load (GL), glycemic index (GI), and adapted dietary inflammatory index (ADII) and markers of inflammation and adipokines in 135 premenopausal women at high genetic risk for breast cancer (NCT00892515). We assessed body mass index (BMI), 3-day food records, and blood biomarkers TNF-α, IL-12, CCL2, IL-10, leptin, and adiponectin. Regression models assessed associations between dietary variables and biomarkers, adjusted for caloric intake and BMI. Participants were on average 34.2 years old with mean BMI of 26.8 kg/m2. Significantly higher levels of IL-10 and leptin were observed in participants with higher GI. Leptin and adiponectin were significantly associated with ADII. Leptin remained associated with ADII after adjustment for caloric intake and BMI. There were no associations between inflammatory biomarkers of interest and GL, GI, and ADII, after adjusting for caloric intake and BMI. Elevated leptin levels were observed with higher ADII independent of caloric intake and BMI. The relationship between carbohydrate quality and inflammatory potential of the diet and markers of inflammation may be modulated by leptin.


Subject(s)
Breast Neoplasms , Leptin , Adiponectin , Adult , Biomarkers , Body Mass Index , Breast Neoplasms/genetics , Diet/adverse effects , Female , Glycemic Index , Humans , Inflammation , Interleukin-10/genetics
3.
J Pediatr Psychol ; 35(4): 368-82, 2010 May.
Article in English | MEDLINE | ID: mdl-19710248

ABSTRACT

OBJECTIVES: To provide quantitative information about the overall effectiveness of adherence interventions to improve adherence and health outcomes for children with chronic illnesses. To evaluate statistically the potential moderators. METHODS: A meta-analysis was performed on 71 adherence intervention studies. RESULTS: Weighted-mean effect size (ES) across all the adherence outcomes for group design studies was in the medium range (mean d = 0.58) and for single-subject design studies was in the large range (mean d = 1.44). The weighted mean ES across all health outcome measures for studies using group designs was in the medium range (mean d = 0.40) and for studies using single-subject designs was in the large range (mean d = 0.74). CONCLUSIONS: Adherence interventions for children with chronic illnesses effectively increase adherence and result in some positive health benefits. Intervention and methodological variables had significant impact on ESs. High levels of heterogeneity characterized the data.


Subject(s)
Chronic Disease/therapy , Outcome Assessment, Health Care , Patient Compliance , Child , Humans , Outcome Assessment, Health Care/methods , Outcome Assessment, Health Care/statistics & numerical data , Patient Compliance/statistics & numerical data
4.
Perception ; 31(10): 1263-74, 2002.
Article in English | MEDLINE | ID: mdl-12430951

ABSTRACT

We examined the effect of visual experience on the haptic Müller-Lyer illusion. Subjects made size estimates of raised lines by using a sliding haptic ruler. Independent groups of blind-folded-sighted, late-blind, congenitally blind, and low-vision subjects judged the sizes of wings-in and wings-out stimuli, plain lines, and lines with short vertical ends. An illusion was found, since the wings-in stimuli were judged as shorter than the wings-out patterns and all of the other stimuli. Subjects generally underestimated the lengths of lines. In a second experiment we found a nonsignificant difference between length judgments of raised lines as opposed to smooth wooden dowels. The strength of the haptic illusion depends upon the angles of the wings, with a much stronger illusion for more acute angles. The effect of visual status was nonsignificant, suggesting that spatial distortion in the haptic Müller-Lyer illusion does not depend upon visual imagery or visual experience.


Subject(s)
Blindness/psychology , Illusions/physiology , Stereognosis/physiology , Adult , Analysis of Variance , Case-Control Studies , Female , Humans , Male , Middle Aged , Psychophysics , Size Perception/physiology , Vision, Low/physiopathology , Vision, Low/psychology
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