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  • 1
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 113, No. 4 ( 2004-04-01), p. 825-832
    Abstract: Objective. Nonadherence to medications is a leading cause of morbidity in children and adolescents who have had a transplant, yet there are no published data about the use of different methods for detecting whether these children are taking their medications. There are also no published data about the age of transition at which a child assumes responsibility over taking the medications. This information is important if interventions to improve adherence are contemplated. Methods. We present an analysis of data obtained in the first year of the implementation of an adherence assessment protocol at a pediatric liver transplant clinic in a tertiary medical care center. Data were obtained for children and adolescents who had a liver transplant at least 1 year before the assessments took place. We used 5 adherence detection methods. The 4 subjective methods were self-reported, scaled questionnaires answered by nurses, physicians, caregivers, and patients. For the objective method, a standard deviation (SD) was calculated for tacrolimus blood levels obtained from each patient over time. A higher SD suggests increased variation among patients’ blood levels and hence more erratic medication taking. We also asked the patients and caregivers who is responsible for taking the medications and what are the reasons for not taking them. The medical outcome measures were biopsy-proven rejection episodes, number of biopsies regardless of the results, number of hospital admissions, and number of in-patient days. Results. An analysis of 81 cases (258 assessments) revealed that the only method that predicted the medical outcome variables (biopsy-proven rejection and number of biopsies) was the SD of medication blood levels. Patients’, clinicians’, and caregivers’ reports were not predictive. Clinicians’ ratings of adherence were not correlated with patients’ or caregivers’. The transition of responsibility for medication taking occurred approximately at the age of 12 years. Forgetfulness was cited as the most common reason for nonadherence by patients and caregivers; medication side effects were not frequently cited. Conclusions. Our results indicate that clinical impression is not sufficient to determine whether children and adolescents are taking their medications after they have had a liver transplant. An objective assessment method should be used. Interventions targeting adherence should address the child’s increasing role beginning in early adolescence. A clinical protocol incorporating objective assessments of adherence could potentially be implemented in other settings. It could form the basis for the evaluation of efficacy of interventions seeking to improve adherence to medications.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2004
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  • 2
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 115, No. 5 ( 2005-05-01), p. e582-e589
    Abstract: Objective. Exposure to emotionally traumatic events is common among children who are treated in pediatric medical care settings, and it is important to recognize the emotional reactions that children might develop as a response to the trauma. Practitioners sometimes rely on parental reports of the child's emotional reactions, but these reports may be biased by the parent's own posttraumatic symptoms. Understanding the differences between parent and child reports of the child's emotional symptoms is essential to guide proper diagnosis and care. This study evaluated discrepancies in parental versus child reports of the child's emotional trauma symptoms in pediatric medical care settings. Methods. We enrolled children and adolescents (age: 8–19) who had not previously received a diagnosis of a psychiatric disorder and were treated in pediatric specialty care clinics at Mount Sinai Medical Center in New York. We used the UCLA posttraumatic stress reaction index, child, adolescent, and parent versions, to evaluate child and parent reports of symptoms of posttraumatic stress disorder (PTSD) in the child. The Impact of Event Scale was used to evaluate the parents' own posttraumatic symptoms. We conducted a “best estimate” psychiatric diagnostic procedure to determine whether the child met diagnostic criteria for PTSD and evaluated the association between the diagnostic status (as determined by the “best estimate” procedure) and the results of the questionnaires. Results. A total of 115 patients and parents consented to the study, and 76 completed the evaluation. Sixty-four percent of the parents identified the child's traumatic experience as their own most traumatic experience, too. The child's self-report of PTSD symptoms was significantly correlated with the diagnosis of PTSD in the child. In contrast, parents' reports of their child's PTSD symptoms were not significantly associated with the child's diagnosis. Parents' own posttraumatic symptoms were associated with parental reports of the child's overall PTSD symptoms (correlation coefficient: 0.283). Conclusions. When a child is emotionally traumatized, the parent's own posttraumatic stress may influence his or her report and interpretation of the child's symptoms. Clinicians who evaluate children and adolescents for PTSD in medical care settings should directly seek the child's report and should not rely exclusively on parental reports. Parental reports of a child's PTSD symptoms can offer insights into the parent's own level of posttraumatic stress.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2005
    detail.hit.zdb_id: 1477004-0
    Location Call Number Limitation Availability
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  • 3
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 130, No. 3 ( 2012-09-01), p. e607-e614
    Abstract: Cholestasis predisposes to fat-soluble vitamin (FSV) deficiencies. A liquid multiple FSV preparation made with tocopheryl polyethylene glycol-1000 succinate (TPGS) is frequently used in infants with biliary atresia (BA) because of ease of administration and presumed efficacy. In this prospective multicenter study, we assessed the prevalence of FSV deficiency in infants with BA who received this FSV/TPGS preparation. METHODS: Infants received FSV/TPGS coadministered with additional vitamin K as routine clinical care in a randomized double-blinded, placebo-controlled trial of corticosteroid therapy after hepatoportoenterostomy (HPE) for BA (identifier NCT 00294684). Levels of FSV, retinol binding protein, total serum lipids, and total bilirubin (TB) were measured 1, 3, and 6 months after HPE. RESULTS: Ninety-two infants with BA were enrolled in this study. Biochemical evidence of FSV insufficiency was common at all time points for vitamin A (29%–36% of patients), vitamin D (21%–37%), vitamin K (10%–22%), and vitamin E (16%–18%). Vitamin levels were inversely correlated with serum TB levels. Biochemical FSV insufficiency was much more common (15%–100% for the different vitamins) in infants whose TB was ≥2 mg/dL. At 3 and 6 months post HPE, only 3 of 24 and 0 of 23 infants, respectively, with TB & gt;2 mg/dL were sufficient in all FSV. CONCLUSIONS: Biochemical FSV insufficiency is commonly observed in infants with BA and persistent cholestasis despite administration of a TPGS containing liquid multiple FSV preparation. Individual vitamin supplementation and careful monitoring are warranted in infants with BA, especially those with TB & gt;2 mg/dL.
    Type of Medium: Online Resource
    ISSN: 0031-4005 , 1098-4275
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2012
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  • 4
    In: Pediatrics, American Academy of Pediatrics (AAP), Vol. 105, No. 2 ( 2000-02-01), p. e29-e29
    Abstract: Symptoms of posttraumatic stress disorder (PTSD) were described in survivors of life-threatening diseases, the trauma being the experiences associated with the disease or its treatment. Their prevalence in liver transplant recipients is unknown. Based on clinical observations, we hypothesize that a significant proportion of pediatric liver transplant recipients suffers from PTSD symptoms. We further hypothesize that nonadherence (noncompliance) to medical management may, in some cases, be associated with these symptoms. Traumatized patients, according to this hypothesis, will avoid taking their medications, because these serve as painful reminders of the disease. Objectives. To determine the prevalence of PTSD symptoms in a sample of pediatric liver transplant recipients. To determine whether symptoms of PTSD are associated with nonadherence in these patients. To describe the clinical presentation of PTSD and the management of severe nonadherence in patients who suffer from this disorder. Methods. Nineteen pediatric liver transplant recipients and their caretakers were interviewed, using the UCLA Post Traumatic Stress Disorder Reaction Index (PTSRI). Data were obtained on a few demographic parameters and perception of disease threat. Adherence was evaluated by 2 methods: 1) a clinician panel (taking into account the clinical sequelae of severe nonadherence); and 2) computation of the standard deviations (SDs) of consecutive determinations of blood levels of Tacrolimus (a higher SD means higher variability between individual measures and is therefore an indicator of nonadherence). As an illustration of the general phenomenon, we describe 3 cases of liver transplant recipients who were nonadherent and who suffered from PTSD. Results. Six of 19 patients had positive scores on all 3 components of the PTSRI (PTSD patients). Three of these, and none of the others, were considered significantly nonadherent by the panel. Therefore, nonadherence was significantly associated with the existence of symptoms from all 3 domains of PTSD (Fisher's exact test) in our sample. In particular, a high avoidance score on the PTSRI was highly correlated with panel-determined nonadherence. Further, SD of medication levels were significantly higher in PTSD patients, compared with the rest of our sample. No significant differences were found in perception of disease threat or demographic variables between PTSD patients and the rest of our sample. The 3 cases that we describe became adherent to their medications when symptoms of PTSD subsided during the course of therapy. Conclusions. Clinically significant nonadherence, determined by 2 different methods, was associated with the full spectrum of PTSD symptoms in this sample. It was especially associated with a high avoidance score, which suggests that avoidance of reminders of the disease (eg, medications) may be a mechanism of nonadherence. Screening for and management of these symptoms, therefore, may improve adherence. This novel concept may be applicable to other patient populations. However, more data are needed before any definite conclusions can be drawn.
    Type of Medium: Online Resource
    ISSN: 1098-4275 , 0031-4005
    Language: English
    Publisher: American Academy of Pediatrics (AAP)
    Publication Date: 2000
    detail.hit.zdb_id: 1477004-0
    Location Call Number Limitation Availability
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