MacDonell K.,Wayne State University |
Naar-King S.,Wayne State University |
Huszti H.,Childrens Hospital of Orange County |
Belzer M.,University of Southern California
AIDS and Behavior | Year: 2013
The study explored barriers to antiretroviral medication adherence in perinatally and behaviorally HIV infected adolescents and young adults in a cross-sectional, multisite sample. The study included a subset of a convenience sample from a cross-sectional analysis. Participants were youth with HIV ages 12-24 who were prescribed HIV medication and reported missing medication in the past 7 days (n = 484, 28.4 % of protocol sample). The top barriers were similar for perinatally and behaviorally infected youth, but perinatally infected youth reported significantly more barriers. Forgetting, not feeling like taking medication and not wanting to be reminded of HIV infection were the most common barriers reported. Number of barriers was significantly correlated with percent of doses missed, viral load, and psychological distress for perinatally infected youth and with doses missed, psychological distress, and substance use for behaviorally infected youth. Interventions to improve adherence to HIV medications should not only address forgetfulness and choosing not to take medications, but also consider route of infection. © 2012 Springer Science+Business Media New York.
Nugent D.,Childrens Hospital of Orange County
Thrombosis Research | Year: 2012
Factor XIII (FXIII) deficiency is an extremely rare congenital condition that is associated with a high risk of potentially life-threatening intracranial hemorrhage, poor wound healing, spontaneous abortion, and a life-long tendency towards spontaneous bleeding and severe bleeding after trauma or surgery. Routine prophylaxis with FXIII concentrate is recommended in all individuals with FXIII levels <1 IU/dL from the time of diagnosis, and in some severely affected patients with FXIII levels of 1-4 IU/dL. Fibrogammin® P is a highly purified, pasteurized, plasma-derived concentrate that has been available in Europe and other countries since 1993 and has recently been approved as Corifact™ in the USA. To support the US registration of Corifact™, a 52-week, prospective, multicenter, open-label study was conducted in 41 patients (mean age 19 years; range <1-42 years) with congenital FXIII deficiency. Corifact™/Fibrogammin® P was administered intravenously at an initial dose of 40 IU/kg every 4 weeks, with dosing adjusted to maintain a trough FXIII activity level of 5-20%. No spontaneous bleeding episodes requiring FXIII treatment were reported during the study (primary endpoint). Preoperative use of Corifact™/Fibrogammin® P successfully prevented postoperative bleeding in two surgeries. Corifact™/Fibrogammin® P was well tolerated during a total exposure of ∼455 subject-months. No patient withdrew from treatment, and there were no reports of virus transmission or thromboembolism-related events. This study adds to the wealth of data gained from clinical trials and almost 20 years of clinical use confirming that Corifact™/Fibrogammin® P is an effective and well-tolerated prophylactic treatment for congenital FXIII deficiency. © 2012 Elsevier Ltd.
Smith E.C.,Childrens Hospital of Orange County |
Smith E.C.,University of California at Irvine |
Ziogas A.,University of California at Irvine |
Anton-Culver H.,University of California at Irvine
Cancer | Year: 2012
BACKGROUND: Hodgkin lymphoma (HL) is one of the most common types of cancer among adolescents and young adults (AYAs) in the United States. Unfortunately, a greater percentage of AYAs are presenting with an advanced stage of disease at the time of diagnosis compared with their younger counterparts. METHODS: The objective of the current study was to examine the association between possible barriers and characteristics (including gender, race, birthplace, marital status, socioeconomic status [SES], and insurance status) that may increase the risk of advanced stage HL at the time of diagnosis in a large cohort of AYA patients with HL from the California Cancer Registry (7343 incident cases of HL diagnosed from 1988-2006, between ages 15 years-40 years). RESULTS: AYAs with advanced stage HL were more likely to be male, of Hispanic or black race/ethnicity, foreign born, single, of lower SES, and uninsured or to have only public health insurance (P <.05). Multivariate logistic regression analysis demonstrated that there was a significant increase in the odds of having advanced HL in males (odds ratio [OR], 1.57; 95% confidence interval [95% CI], 1.42-1.74 [P <.0001]), those with the lowest SES (OR, 1.47; 95% CI, 1.23-1.75 [P =.0003]), those without health insurance (OR, 1.76; 95% CI, 1.34-2.31 [P <.0001]), and those with public health insurance (OR, 1.45; 95% CI, 1.23-1.71 [P <.0001]). CONCLUSIONS: A strong association was found between male gender, lower SES, and lack of health insurance and advanced stage HL at the time of diagnosis in AYAs (See editorial on pages 000-000, this issue.) © 2012 American Cancer Society.
Mulgrew K.W.,Childrens Hospital of Orange County
Telemedicine journal and e-health : the official journal of the American Telemedicine Association | Year: 2011
Childhood obesity is a serious health concern, especially in rural areas. Its management involves in-depth lifestyle and psychosocial assessment as well as patient-centered counseling. Telemedicine has increased the ability of patients in rural areas to obtain subspecialty consultations. Our objective was to determine whether a significant difference in quality of care, as measured by parent satisfaction, existed between consultations for childhood obesity delivered face to face and by telemedicine. We performed a pilot study in which questionnaires were distributed to parents of children under 12 years of age who had received consultations for childhood obesity at a university-affiliated pediatric weight management clinic, either face to face or by telemedicine. The questionnaires assessed various aspects of quality of care and patient-centered care including consulting providers' listening skills, ease of understanding instructions delivered to patients and their families, and the comfort level of parents in discussing health concerns. A total of 54 surveys were collected (22 telemedicine, 32 face-to-face). Of those, 25 (10 telemedicine, 15 face-to-face) met inclusion criteria. There was no difference in overall parent satisfaction with consultations between the two groups. However, parents rated telemedicine visits slightly lower than face-to-face visits when asked whether the provider explained things about the child's health in a way that was easy to understand (p=0.01). All parents of children who had received care via telemedicine said that they would participate in telemedicine consultations again. In our pilot, there was no significant difference in parent satisfaction between consultations for childhood obesity delivered face to face and by telemedicine. Therefore, preliminary evidence suggests that childhood obesity care delivered by telemedicine can improve access to quality patient-centered care in underserved rural areas. An important limitation is our sample size, which was not large enough to determine whether satisfaction in the telemedicine group was greater than in the face-to-face group.
Andolina J.R.,University of Rochester |
Neudorf S.M.,Childrens Hospital of Orange County |
Corey S.J.,Northwestern University
Blood | Year: 2012
Chronic myeloid leukemia (CML) is composed of 3% of pediatric leukemias, making evidence-based recommendations difficult. Imatinib has revolutionized the treatment for adult CML by eliminating allogeneic stem cell transplantation for almost all patients in chronic phase. Shown effective in pediatric CML, imatinib and successive tyrosine kinase inhibitors (TKI) have provided more therapeutic options. Because stem cell transplantation has been better tolerated in children and adolescents, the decision to treat by either TKI or transplantation is controversial. We present a recent case of a 12-month-old boy diagnosed with BCR-ABL + CML to highlight the controversies in treatment recommendations. We review the pediatric stem cell transplantation outcomes as well as the pediatric experience with imatinib and other TKIs. Finally, we compare the side effects as well as costs associated with allogeneic stem cell transplantation versus TKI therapy. We recommend that frontline therapy for pediatric CMLin chronic phase is TKI therapy without transplantation. Patients in accelerated or blast crisis or who fail to reach landmarks on TKIs either because of intolerance or resistance should pursue stem cell transplantation. Although we recommend adopting adult clinical experience to guide therapeutic decisionmaking, the issues of infant CML, drug formulation, pharmacokinetics, and adolescent compliance merit clinical investigation. © 2012 by The American Society of Hematology.