9 research outputs found

    Quality of Life of Adopted Chinese Versus Nonadopted Dutch Children with Cleft Lip and/or Palate: A Propensity Score Matched Analysis

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    Objective: To examine quality of life in internationally adopted children with cleft lip and/or palate (CL/P) versus non-adopted children with CL/P. Design: Cross sectional study. Setting: Multidisciplinary cleft team of a secondary and tertiary hospital in the Netherlands. Methods: Parents of children under the age of 8 treated by the multidisciplinary cleft team of our institutions were asked to fill out a questionnaire containing demographic and clinical data and a validated parent proxy measure of cleft-specific quality of life instrument for children aged 0-8: the CleftChild-8. Adopted children were matched to non-adopted children using propensity score matching based on sex, age, type of cleft, if palatal surgery was completed and the level of education of the parent. CleftChild-8 scores were then compared between the matched samples of adopted and non-adopted children with CL/P. Main Outcome Measure(s): Differences in (sub)domain scores of the CleftChild-8. Results: Most median CleftChild-8 scores of the adopted children (n = 29) were slightly lower compared to the 29 matched non-adopted children. A significant difference was seen for the domain score 'satisfaction with (operative) treatment' and 3 of the 13 subdomain scores: 'post-operative results', 'acceptance by siblings' and 'acceptance by family/friends'. Conclusions: By parent report, adopted children with CL/P experienced some areas of lower quality of life when compared to non-adopted children. Members of cleft teams should be aware of the problems associated with adoption and offer additional guidance and counseling to adopted children and their parents

    Seasonal Influence on the Numbers of Gender-Related Orofacial Cleft Conceptions in the Netherlands

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    Background: In the multifactorial etiology of orofacial clefts (OFCs), environmental factors play an important role. To trace the influence of these factors, the timing of the cell biological mechanisms that occur during embryological development of the primary and secondary palates must be taken into account. That is, the fusion process of the facial and palatal processes, respectively, followed by their differentiation into bone and musculature, which take place during the first trimester of pregnancy. During this period, harmful seasonal influences such as viral infections and vitamin deficiencies could induce OFC in the embryo. Aims: The aim of this study is to find out whether a seasonal conception period with an increased risk of OFC development exists, particularly gender related. Methods: This was a retrospective cross-sectional study on children with OFC born in the Netherlands from 2006 to 2016. Total conception rates of live births in the Netherlands were used as a control group. χ2 tests were performed to analyze monthly and seasonal differences. Males and females, positive and negative family history and subphenotype groups based on fusion and/or differentiation (F- and/or D-) defects, and their timing in embryogenesis were analyzed separately. Results: In total, 1653 children with OFC, 1041 males and 612 females, were analyzed. Only males with FD-defects showed a significant seasonal variation with an increase in conceptions during spring, most often in May. Conclusions: Males with FD-defects showed a significant seasonal variation with an increase in conceptions during spring. No other seasonal trends could be demonstrated

    Early Referral for Breast-Cancer-Related Lymphedema: Do We Follow the Evidence?: A Two-Year Prospective Multicenter Cohort Study

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    The early detection of breast-cancer-related lymphedema and referral for therapy has the potential to reduce lymphedema-related morbidity. Although research shows the benefits, a gap is observed between evidence and daily practice. We aimed to determine whether the early detection of lymphedema and referral for treatment is adequate following the current guidelines. Women with primary breast cancer treated with breast-conserving therapy or ablative treatment were included. Demographic-, general health-, tumor-, and treatment-related data were recorded. Bilateral arm volume measurements were performed preoperatively and 3, 6, 12, and 24 months post-surgery. A 5% or greater Relative Volume Change was considered the cutoff point for lymphedema and as an indication for therapy referral. After 24 months post-surgery, the main outcomes show that among the patients with early signs of lymphedema, based on a Relative Volume Change ≄5%, a nonreferral for therapy was noted in 83%. Additionally, we observed a significant improvement of the mean Relative Volume Change at 24 months within this group, which might implicate that nonreferral was an adequate choice and that watchful waiting is appropriate when lymphedema is detected within the first year post-surgery

    Early Referral for Breast-Cancer-Related Lymphedema: Do We Follow the Evidence?:A Two-Year Prospective Multicenter Cohort Study

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    SIMPLE SUMMARY: The early detection of breast-cancer-related lymphedema and referral for therapy can reduce lymphedema-related problems. We aimed to determine whether the early detection of lymphedema and referral for treatment is adequate. Women treated for breast cancer were followed up within a standard protocol for two years with several measurements, including arm volumes. A 5% or greater Relative Volume Change was used to diagnose for lymphedema and as an indication for therapy referral. Among the patients with early signs of lymphedema, 83% of them were not referred for therapy. This remained consistent over a 2-year follow-up period. Additionally, we noticed a significant improvement of the mean Relative Volume Change at 24 months within this group. We concluded that waiting with a therapy referral and carefully monitoring if symptoms change may represent an appropriate choice when lymphedema is detected within the first year post-surgery. ABSTRACT: The early detection of breast-cancer-related lymphedema and referral for therapy has the potential to reduce lymphedema-related morbidity. Although research shows the benefits, a gap is observed between evidence and daily practice. We aimed to determine whether the early detection of lymphedema and referral for treatment is adequate following the current guidelines. Women with primary breast cancer treated with breast-conserving therapy or ablative treatment were included. Demographic-, general health-, tumor-, and treatment-related data were recorded. Bilateral arm volume measurements were performed preoperatively and 3, 6, 12, and 24 months post-surgery. A 5% or greater Relative Volume Change was considered the cutoff point for lymphedema and as an indication for therapy referral. After 24 months post-surgery, the main outcomes show that among the patients with early signs of lymphedema, based on a Relative Volume Change ≄5%, a nonreferral for therapy was noted in 83%. Additionally, we observed a significant improvement of the mean Relative Volume Change at 24 months within this group, which might implicate that nonreferral was an adequate choice and that watchful waiting is appropriate when lymphedema is detected within the first year post-surgery

    Early Referral for Breast-Cancer-Related Lymphedema: Do We Follow the Evidence? A Two-Year Prospective Multicenter Cohort Study

    No full text
    The early detection of breast-cancer-related lymphedema and referral for therapy has the potential to reduce lymphedema-related morbidity. Although research shows the benefits, a gap is observed between evidence and daily practice. We aimed to determine whether the early detection of lymphedema and referral for treatment is adequate following the current guidelines. Women with primary breast cancer treated with breast-conserving therapy or ablative treatment were included. Demographic-, general health-, tumor-, and treatment-related data were recorded. Bilateral arm volume measurements were performed preoperatively and 3, 6, 12, and 24 months post-surgery. A 5% or greater Relative Volume Change was considered the cutoff point for lymphedema and as an indication for therapy referral. After 24 months post-surgery, the main outcomes show that among the patients with early signs of lymphedema, based on a Relative Volume Change ≄5%, a nonreferral for therapy was noted in 83%. Additionally, we observed a significant improvement of the mean Relative Volume Change at 24 months within this group, which might implicate that nonreferral was an adequate choice and that watchful waiting is appropriate when lymphedema is detected within the first year post-surgery

    Clinical Practice Guidelines on the Treatment of Patients with Cleft Lip, Alveolus, and Palate: An Executive Summary.

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    Significant treatment variation exists in the Netherlands between teams treating patients with cleft lip, alveolus, and/or palate, resulting in a confusing and undesirable situation for patients, parents, and practitioners. Therefore, to optimize cleft care, clinical practice guidelines (CPGs) were developed. The aim of this report is to describe CPG development, share the main recommendations, and indicate knowledge gaps regarding cleft care. Together with patients and parents, a multidisciplinary working group of representatives from all relevant disciplines assisted by two experienced epidemiologists identified the topics to be addressed in the CPGs. Searching the Medline, Embase, and Cochrane Library databases identified 5157 articles, 60 of which remained after applying inclusion and exclusion criteria. We rated the quality of the evidence from moderate to very low. The working group formulated 71 recommendations regarding genetic testing, feeding, lip and palate closure, hearing, hypernasality, bone grafting, orthodontics, psychosocial guidance, dentistry, osteotomy versus distraction, and rhinoplasty. The final CPGs were obtained after review by all stakeholders and allow cleft teams to base their treatment on current knowledge. With high-quality evidence lacking, the need for additional high-quality studies has become apparent
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