Lauren Mednick

Iron chelation adherence to deferoxamine and deferasirox in thalassemia.

The Thalassemia Clinical Research Network collected adherence information from 79 patients on deferoxamine and 186 on deferasirox from 2007 to 2009. Chelation adherence was defined as percent of doses administered in the last 4 weeks (patient report) out of those prescribed(chart review). Chelation history since 2002 was available for 97 patients currently on deferoxamine and 217 on deferasirox, with crude estimates of adherence from chart review. Self-reported adherence to both deferoxamine and deferasirox were quite high, with slightly higher adherence to the oral chelator (97 vs. 92%). Ninety percent of patients on deferasirox reported at least 90% adherence, compared with 75% of patients on deferoxamine. Adherence to both chelators was highest in children, followed by adolescents and older adults.Predictors of lower deferoxamine adherence were smoking in the past year, problems sticking themselves (adults only), problems wearing their pump, and fewer transfusions in the past year. Predictors of lower deferasirox adherence were bodily pain and depression. Switching chelators resulted in increased adherence, regardless of the direction of the switch, although switching from deferoxamine to deferasirox was far more common. As adherence to deferoxamine is higher than previously reported, it appears beneficial for patients to have a choice in chelators.

Satisfaction and Quality of Life in Children with Type 1 Diabetes and Their Parents Following Transition to Insulin Pump Therapy

The purpose of this study was to describe satisfaction with the transition to insulin pump therapy and subsequent quality of life among 22 children with type 1 diabetes and their parents. Following the transition to pump therapy, children and parents completed a newly developed measure of insulin pump therapy satisfaction (Insulin Pump Therapy Satisfaction Questionnaire [IPTSQ]), and children completed a standardized measure of diabetes-related quality of life. IPTSQ results suggest that children and parents were overwhelmingly satisfied with insulin pump use. Parents and children reported greatest satisfaction with flexibility related to eating and sleeping afforded by pump therapy. Parent-child satisfaction were highly correlated (r = .53), and childrens pump satisfaction was significantly positively correlated with diabetes-related quality of life (r = .51). These pilot data are among the first to document specific areas of satisfaction and indicate an association between insulin pump therapy satisfaction and quality of life. Understanding specific aspects of insulin pump therapy that are related to quality of life is important for improving health outcomes among youngsters with type 1 diabetes using insulin pumps.

Symptoms of depression and anxiety in patients with thalassemia: Prevalence and correlates in the thalassemia longitudinal cohort

Thalassemia is an inherited blood disorder that requires lifelong adherence to a complicated and burdensome medical regimen which could potentially impact emotional functioning of patients. The importance of understanding and promoting healthy emotional functioning is crucial not only to psychological well‐being, but also to physical health as it has been shown to impact adherence to medical regimens [ 1–4 ]. The current study aimed to [ 1 ] determine the prevalence of depressive and anxiety symptoms in adolescent and adult patients with thalassemia; and [ 2 ] explore possible demographic, medical, and psychosocial correlates of these symptoms in 276 patients (14–58 years old, M age = 27.83; 52% female). Overall, most patients did not report experiencing significant symptoms of anxiety and depression (33% of participants indicated experiencing symptoms of anxiety and 11% symptoms of depression). Females and older patients were more likely to experience these symptoms than males and younger patients. Symptoms of anxiety and depression were positively associated with self‐report of difficulty with adherence and negatively associated with quality of life. Given these findings, regular screening for anxiety and depression symptoms could help to identify at‐risk individuals to provide them with appropriate psychological support with the goal of improving both emotional and physical health. Am. J. Hematol., 2010.

Stress and Coping of Parents of Young Children Diagnosed With Bladder Exstrophy

PURPOSE Previous studies have examined the psychological impact that living with bladder exstrophy has on patients. However, little is known about how parents of children diagnosed with this condition are affected. We examine how parents caring for children diagnosed with bladder exstrophy are impacted. An increased understanding of the stressors these parents face may lead to the development of appropriate parenting interventions, which may ultimately affect psychosocial and health outcomes in the child. MATERIALS AND METHODS All parents of children 10 years and younger treated for bladder exstrophy at our institution were selected from a centralized database. A total of 20 parents (65% of the eligible population) completed standardized questionnaires assessing pediatric specific parenting stress (Pediatric Inventory for Parents) and coping (Ways of Coping Questionnaire). RESULTS Parents identified several common stressors (eg worrying about the long-term impact of the illness, helping the child with his/her hygiene needs) and overall reported using adaptive ways of coping (ie planful problem solving, seeking social support, positive reappraisal). However, when they experienced increased stress they reported using more nonadaptive ways of coping (ie escape/avoidance and distancing). CONCLUSIONS Overall the findings of our study suggest that parents of children diagnosed with bladder exstrophy experience a significant amount of stress. In fact, parents in our study indicated experiencing similar frequency and difficulty of stress compared to parents of the same aged children diagnosed with type 1 diabetes. Increased stress can have negative consequences for parents and children. Future directions and implications of these findings are discussed.

Depression Screening in Adolescents in the United States: A National Study of Ambulatory Office-Based Practice

OBJECTIVE To determine the frequency of depression screening during ambulatory, office-based visits for adolescents seen in general/family medicine or pediatric practices in the United States using nationally representative data; to determine the patient-, provider-, and visit-level factors associated with depression screening during ambulatory visits to inform recommendations to promote screening. METHODS This cross-sectional study used the 2005-2010 National Ambulatory Medical Care and National Hospital Ambulatory Medical Care Surveys. Data were limited to ambulatory, office-based visits to general/family medicine or pediatrics clinics for adolescents aged 12 to 18 years who did not have a documented diagnosis of depression. RESULTS Depression screening was rare (0.2%; 95% confidence interval [CI] 0.1-0.3), and it was 80% less likely to occur during visits for Hispanic compared to non-Hispanic white adolescents (adjusted odds ratio [aOR] 0.2, 95% CI 0.1-0.7). Depression screening was 9.1 times more likely in the Northeast compared to the West (aOR 9.1, 95% CI 2.2-38.1) if there were no visits within past 12 months compared to 6 or more visits (aOR 6.1; 95% CI 1.8-20.4), and if stress management (aOR 24.2, 95% CI 11.8-49.5) or other mental health counseling (aOR 5.2, 95% CI 1.2-23.6) were provided. CONCLUSIONS Depression screening for adolescents is rare and is associated with racial/ethnic and regional disparities. The integration of behavioral and mental health services within the patient-centered medical home might assist providers in identifying and treating depression and in addressing such disparities.

A Survey to Assess Body and Self-Image in Individuals with Bladder Exstrophy: A Call for Psychosocial Support

PURPOSE Although research in patients with urological conditions indicates that functional limitations, pain, limited mobility and social restrictions can impact self-image, to our knowledge the influence of the visibility of the condition has not been examined. We assessed body image and self-image at school age through young adulthood in patients with bladder exstrophy compared to patients with kidney stones. MATERIALS AND METHODS Patients diagnosed with bladder exstrophy and kidney stones completed a 25-item multiple choice Urological Body Image Questionnaire for ages 13 to 25 years, which was created for the current study. It consists of questions on physical appearance, avoidance behaviors, urological condition disclosure, romantic relationships and future expectations. A modified Urological Body Image Questionnaire for patients 8 to 12 years old was created by removing questions on relationships and future expectations. RESULTS A total of 24 patients with bladder exstrophy and 24 with kidney stones 8 to 25 years old completed the questionnaire. Compared to patients with kidney stones, patients with bladder exstrophy were significantly more likely to avoid changing clothes in front of peers and to not tell friends about the condition (each p = 0.0001). Patients with bladder exstrophy were also significantly more likely to think that the condition would prevent having future romantic relationships (p = 0.002) and children (p = 0.003). CONCLUSIONS Differences in the visibility and privacy of the 2 conditions likely explain the discrepancy between the groups. Findings may call for an individual approach to assessing issues related to self-esteem and identity in patients with bladder exstrophy and may highlight the importance of receiving psychosocial support.

Routine Behavioral and Mental Health Screening in Young Children with Type 1 Diabetes Mellitus

The American Diabetes Association and International Society for Pediatric and Adolescent Diabetes recommend that providers of diabetes care receive training in the recognition of psychosocial problems related to diabetes.

Beliefs about chelation among thalassemia patients

BackgroundUnderstanding patients’ views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy.MethodsThe Beliefs in Medicine Questionnaire (BMQ) was used to assess beliefs in chelation in thalassemia patients from North America and London in the Thalassemia Longitudinal Cohort (TLC) of the Thalassemia Clinical Research Network (TCRN). Chelation adherence was based on patient report of doses administered out of those prescribed in the last four weeks.ResultsOf 371 patients (ages 5-58y, mean 24y), 93% were transfused and 92% receiving chelation (26% deferoxamine (DFO; a slow subcutaneous infusion via portable pump), 63% oral, 11% combination). Patients expressed high “necessity” for transfusion (96%), DFO chelation (92%) and oral chelation (89%), with lower “concern” about treatment (48%, 39%, 19% respectively). Concern about oral chelation was significantly lower than that of DFO (p<0.001). Self-reported adherence to chelation was not associated with views about necessity or concerns, but negatively correlated with perceived sensitivity to DFO (Sensitive Soma scale; r=−0.23, p=0.01) and side effects of oral chelation (r=−0.14, p=0.04). High ferritin iron levels, potentially indicating lower adherence, were found in 41% of patients reporting low necessity of oral chelation compared to 24% reporting high necessity (p=0.048). Concerns about treatment were associated with lower quality of life and more symptoms of anxiety and depression.ConclusionsDespite their requirement for multimodal therapy, thalassemia patients have positive views about medicine, more so than in other disease populations. Patients may benefit from education about the tolerability of chelation and strategies to effectively cope with side effects, both of which might be beneficial in lowering body iron burden.Clinicaltrials.gov identifierNCT00661804

Commentary: Electronic Communication in the Pediatric Setting—Dilemmas Associated with Patient Blogs

Advances in communication and technology have posed serious challenges to some of the fundamental ethical principles upon which psychologists operate, including the protection of patient privacy and confidentiality and the ideals of beneficence and nonmaleficence. In pediatric settings, efforts have been made to limit inadvertent dissemination of personal information in public areas such as hallways, cafeterias, elevators, and hospital emergency departments (Olsen & Sabin, 2003; Patient privacy, 2004; Ubel et al., 1995). Likewise, legislation (The Health Insurance Portability and Accountability Act, HIPAA, 1996) now imposes standards around electronic transmission of protected health information, and psychologists are addressing privacy and confidentiality concerns in the context of computer-mediated clinical services (Drotar et al., 2006). However, recent phenomena in electronic communication, including the use of weblogs, or ‘‘blogs’’ (easily updated personal web pages that allow for visitor comments) by patients and their families, raise new and unique threats and dilemmas regarding our ethical and professional principles. Blogging in the pediatric setting has become increasingly commonplace. Several websites (e.g., Caring Bridge.org, CarePages.com) are devoted exclusively to supporting blogs hosted by medical patients and families, and countless other blogs of this nature are hosted on more general social-networking websites (e.g., MySpace, Facebook) or maintained personally. The phenomenon has been growing at an explosive rate: CaringBridges boasts that on their site alone, over 150,000 families have created blogs which have been visited over half a billion times (CaringBridge, 2008). As child psychologists, we appreciate the range of inherent benefits of these forms of computer-mediated communication for patients and their families. Maintaining a blog may allow for cathartic narration regarding stressful medical experiences, thus facilitating adaptive coping. Blogs also promote efficient communication with countless friends and family and permit unregulated ‘‘visitation’’ (through visitor comments) regardless of geographic distance or hospital policies, thereby providing users with ongoing emotional support. Similarly, social networking sites may facilitate identity exploration, promote social support, and encourage perspective-taking skills, particularly for adolescent users (Tynes, 2007). Despite these and other potential benefits, the widespread and unconstrained accessibility of patient blogs poses pediatric psychologists with unparalleled challenges. There are four main categories of typically encountered ethical and professional dilemmas related to patient and family blog use: (a) privacy/confidentiality of other patients, (b) professional reactions/reputations, (c) privacy of the child/family, and (d) therapeutic boundaries.

Health Related Quality of Life in Patients with Bladder Exstrophy: A Call for Targeted Interventions

PURPOSE Research on health related quality of life in patients with bladder exstrophy has demonstrated mixed results compared to population samples. Few studies have had a comparison group with a urological disorder and none correlated body image to health related quality of life. We compared health related quality of life in patients with bladder exstrophy to that in patients with kidney stones and correlated body image to health related quality of life in the bladder exstrophy population. MATERIALS AND METHODS Participants included 24 patients with kidney stones and 24 with bladder exstrophy. Patient age was 8 to 25 years. Participants completed the PedsQL (Pediatric Quality of Life Inventory) and the 25-item multiple choice UBIQ (Urological Body Image Questionnaire), which was created for the current study. RESULTS Compared to patients with kidney stones those with bladder exstrophy indicated significantly higher scores on physical functioning (p = 0.0005) and overall health related quality of life (p = 0.02) in the 8 to 17-year-old cohort. When health related quality of life was compared to body image in patients with bladder exstrophy, lower social scores were associated with those who worried about friends finding out about the condition (p = 0.01) and about having romantic relationships (p = 0.003). Lower social (p = 0.006) and emotional (p = 0.009) functioning scores were associated with patients who thought that they were less likely to have romantic relationships. CONCLUSIONS The finding that patients with bladder exstrophy had a better physical functioning score than those with kidney stones is not surprising, given the morbidity of active stone disease. The negative correlations with body image in the bladder exstrophy population may be due to the possibility of others discovering the condition and the perceived likelihood of not having romantic relationships.