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Background: Pediatric rectal prolapse (RP) is a rare but burdensome disease. We sought to describe our RP patient population’s mental behavioral health disorder (MBHD) history and compare their outcomes. Methods: In a single center retrospective cohort study, all patients who underwent surgical evaluation of RP from 2016-2021 were identified and reviewed. Results: Of 56 patients identified, 30 met inclusion criteria, 16 (53.3%) had a documented MBHD. Those with MBHD were significantly older (14.4 vs 9.4 years, p=0.027), and had higher rates of constipation (15, 94% vs 19, 17%, p =0.05). They had significantly longer duration of medical management before intervention than those without MBHD (216 vs 57 days, p=0.046). Ultimately, more patients with MBHD underwent operative intervention for rectal prolapse (8, 50% vs 2, 14.2%, p =0.019). Conclusions: Pediatric patients with rectal prolapse have a high rate of MBHD and despite longer intervals of medical management, often require operative intervention.

Purpose Spinal fusion surgery is associated with high levels of stress and anxiety for patients and their caregivers. Medical simulation has demonstrated efficacy in improving preparedness, knowledge, and overall experience prior to other medical procedures. The current study examines the utility of a multi-faceted preparation program (SIMDiscovery) using simulation techniques to reduce anxiety and increase preparedness among patients undergoing spinal fusion surgery and their caregivers. Methods Participants attended SIMDiscovery where they received hands-on preparation about what to expect before, during, and after their surgery. Anxiety, preparedness, and knowledge about the procedure were assessed pre- and post-participation using self-report measures. Participants also completed a questionnaire at their first post-operative medical appointment. Differences from pre to post and between patients and caregivers were calculated with paired and independent sample t-tests. Results Participants included 22 patients and 29 caregivers. Post-SIMDiscovery, both groups demonstrated increased knowledge for the surgical process and lower state anxiety. Patients reported increased feelings of preparedness in all areas while caregivers reported increased feelings of preparedness in most areas. Families continued to report positive impact of the program 30 days after surgery; however, they also identified areas where they desired increased preparation. Conclusions SIMDiscovery increased patients’ and caregivers’ knowledge regarding spinal fusion surgery and helped them feel less anxious and more prepared regarding most aspects of the surgical process. These changes were generally maintained throughout the post-operative period. Participants identified areas for increased preparation, highlighting the importance of continuing to adapt programs based on patient and family feedback. Level of evidence Level III. Supplementary Information The online version contains supplementary material available at 10.1007/s43390-021-00322-6.

SUMMARY STATEMENT Changing healthcare systems and efforts to decrease medical costs have resulted in many more patients and caregivers (PCs) needing to manage life-sustaining therapies on their own. Given the potential for underpreparedness to result in increased morbidity and mortality, developing safe and efficient homecare training methods for PCs is essential. Medical simulation with PCs is an underused tool, which has the potential to decrease anxiety and increase preparedness through opportunities for repeated practice of medical procedures within a safe, controlled environment. This article describes the development of a hospital-based simulation service line for PCs, leveraging lessons learned from training for 250 patients and 450 caregivers in 14 different departments and subspecialties, and explains adaptations of standard simulation methods necessary for safe and effective use of simulation with this unique population. Process blueprint, examples of specific programs, as well as feedback from participants and clinicians are included.

Introduction Aligning expectations during the informed consent process before a child's surgery is an important element of good communication that benefits both surgical staff and families. We developed and evaluated a 2-hour pilot interprofessional workshop to improve the communication and relational skills of pediatric surgeons and nurse practitioners. Methods Focus groups with families identified key challenges in the process of informed consent. An interprofessional team, including parents whose children had experienced complex surgeries, developed the workshop collaboratively. A realistic simulation with professional actors portraying parents allowed surgical staff to practice communication skills and receive feedback about the parent perspective. Participants completed a postworkshop evaluation to determine whether the workshop met its objectives and whether they would change practice. Results Five key themes identified for the workshop included customize communication; align expectations; share clinical uncertainty; recognize/attend to emotions; and identify team members. Thirty-five clinicians participated in a workshop, and 89% completed evaluations. Three-quarters reported the learning to be valuable, and 64% were likely to change practice. Eighty-seven percent would recommend the workshop to other colleagues, and 58 to 74% felt more prepared to achieve each of eight specific skills. Discussion An innovative workshop for pediatric surgical practitioners to align family-clinician expectations can help improve clinician communication skills and comfort with informed consent. Keys to workshop development included involving parents to identify themes and participate as workshop co-faculty; enlisting leadership and recruiting surgical champions; and using pre-existing meetings to ease scheduling challenges of busy practitioners. Booster sessions may facilitate the desired cultural changes.

Background:Adherence to disease-modifying therapies (DMTs) in pediatric multiple sclerosis (MS) is not well understood. We examined the prevalence and risk factors for poor adherence in pediatric MS.Methods:This cross-sectional study recruited youth with MS from 12 North American pediatric MS clinics. In addition to pharmacy-refill data, patients and parents completed self-report measures of adherence and quality of life. Additionally, patients completed measures of self-efficacy and well-being. Factor analysis and linear regression methods were used.Results:A total of 66 youth (mean age, 15.7 years) received MS DMTs (33% oral, 66% injectable). Estimates of poor adherence (i.e. missing >20% of doses) varied by source: pharmacy 7%, parent 14%, and patient 41%. Factor analysis yielded two composites: adherence summary and parental involvement in adherence. Regressions revealed that patients with better self-reported physical functioning were more adherent. Parents were more likely to be involved in adherence when their child had worse parent-reported PedsQL School Functioning and lower MS Self-Efficacy Control. Oral DMTs were associated with lesser parental involvement in adherence.Conclusion:Rates of non-adherence varied by information source. Better self-reported physical functioning was the strongest predictor of adherence. Parental involvement in adherence was associated with worse PedsQL School Functioning and lower MS Self-Efficacy-measured confidence in controlling MS.

Background: Communication is considered a key indicator for high-quality patient- and family-centered healthcare. However, few studies have assessed pediatric preferences for healthcare communicati...

To report the results of a randomized controlled trial using an electronic monitoring device (EM) plus a motivational interviewing (MI) intervention to enhance adherence to disease-modifying therapies (DMT) in pediatric MS.Fifty-two youth with MS (16.03 ± 2.2 years) were randomized to receive either MI (n = 25) (target intervention) or a MS medication video (n = 27) (attention control). Primary endpoint was change in adherence. Secondary outcomes included changes in quality of life, well-being and self-efficacy. Random effects modeling and Cohen's effect size computation evaluated intervention impact.Longitudinal random effect models revealed that the MI group decreased their EM adherence (GroupxTime interaction = -0.19), while increasing frequency of parental DMT reminder (26.01)/administration (11.69). We found decreased EM use in the MI group at 6 months (Cohen's d = -0.61), but increased pharmacy refill adherence (d = 0.23). Parental reminders about medication increased in MI subjects vs controls (d = 0.59 at 3 months; d = 0.70 at 6 months). We found increases in self-reported adherence (d = 0.21) at 3 but not 6 months, fewer barriers to adherence at three (d = -0.58) and six months (d = -0.31), better physical (d = 0.23 at 3 months; d = 0.45 at 6 months), emotional (d = 0.25 at 3 months) and self-efficacy function (d = 0.55 at 3 months; 0.48 at 6 months), but worse well-being, including self-acceptance (d = -0.53 at 6 months) and environmental mastery (d = -0.42 at 3 and 6 months) in intervention as compared to control patients.Participants receiving MI + EM experienced worsening on objective measures of adherence and increased parental involvement, but improved on some self- and parent-reported measures. MI participants reported improvements in quality of life and self-efficacy, but worsened well-being.

Background 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. Objective To report the results of routine behavioral/mental health screening for children with type 1 diabetes mellitus (T1D) seen in a multidisciplinary pediatric diabetes program. Subjects and methods This was a cross-sectional study of children with T1D ages 4–11 years, who underwent behavioral/mental health screening as part of their diabetes care. Screening utilized the Strengths and Difficulties Questionnaire (SDQ) Parent Proxy Version, and scores were reviewed by a social worker. SDQ scale and total difficulties scores were compared by gender, visit type, age, T1D duration, and HbA1c. Scores were also compared to age-appropriate normative data for children in United States of America (US). Results SDQ Parent Proxy Version total difficulties and scale scores did not differ by patient or visit characteristics. Compared with normative data for US children, a greater proportion of children with T1D ages 4–7 and 8–10 years had borderline/abnormal scores on the emotional symptoms scale (p = 0.01 and p = 0.03, respectively), suggesting risk for psychological disorders, such as anxiety and depression. Conclusions Our findings suggest that children less than 11 years old with T1D may have greater emotional symptoms as compared to their age-matched healthy peers. Pediatric diabetes care providers, with access to mental health services, should consider incorporating routine behavioral/mental health screening for children less than 12 years old in their practice.

Blood-injection-injury phobias can be so severe that they interfere with receiving necessary medical care. Compared with most other phobias that typically increase heart rate, blood-injection-injury phobias are unique in their association with vasovagal responses. Thus, patients with blood-injection-injury phobias are typically less responsive to relaxation techniques, which in fact may be counterproductive. The current case studies describe use and clinical effectiveness of applied tension for treatment of severe blood-injection-injury phobia in two adolescent patients. Treatment included in vivo gradual exposure to feared stimuli combined with mastery of the tension technique to cope with anxiety, reduce vasovagal responses, and ultimately receive recommended medical treatment. Both patients experienced a significant decrease in anxiety and successfully underwent medical intervention without experiencing syncope. Directions for future research are discussed.

In the face of the ever-growing popularity of social media, psychologists continually encounter new dilemmas regarding our ethical and professional principles. Negotiating the balance between the intrinsically public nature of social media participation and the highly private nature of the therapeutic relationship can be a challenge. Psychologists working with children and adolescents are of particular interest, given both the popularity of social media among children and teens and the specific treatment concerns on which clinical work often focuses. The authors surveyed 246 psychologists and psychologists-in-training regarding their own blogging and social networking practices, as well as their behavior around their clients’ online presence. A majority of respondents indicated that they participate in some form of social media and a lesser, though sizable, percentage reported viewing information about their clients online. Many respondents indicated that they have encountered concerning material on their clients’ social media pages, and there does not appear to be a clear consensus about how psychologists handle matters of Internet safety and privacy with their underage clients. Based on the responses to this survey, a series of considerations and guidelines for our professional practice are proposed, and psychologists are encouraged to engage in thoughtful self-reflection as they establish their own policies regarding these matters.

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.

Objective To examine demographic and clinical characteristics, such as pediatric parenting stress and self-efficacy for diabetes care, of parents of children newly diagnosed with type 1 diabetes that are associated with parental anxiety and depression. Methods 102 parents reported on their levels of depression (CESD), state anxiety (STAI), pediatric parenting stress (PIP), and self-efficacy for diabetes care (SED) within 4 weeks of their child's diagnosis with type 1 diabetes. Data were analyzed using hierarchical multiple regression. Results Parents' scores in the clinical range for depression and anxiety were associated with increased frequency and difficulty of pediatric parenting stress, and there was a trend for depression to be related to lower self-efficacy for diabetes care. The association of female gender with anxiety and depression was partially mediated by more frequent pediatric parenting stress. Conclusion Parents of children newly diagnosed with type 1 diabetes are at risk for experiencing anxiety and depression, related, in part, to their experiences of pediatric parenting stress. Practice implications Providers and educators should be aware of the risk for depression and anxiety in parents and should work to decrease pediatric parenting stress, increase self-efficacy, and refer parents who are experiencing significant anxiety or depression following their child's diagnosis to a mental health specialist.

Little research has explored potential resilience factors in parenting a child with a chronic illness—or factors that help protect against the experience of psychological distress. This study explored the relation between hope (a resilience factor) and anxiety (a distress factor) in mothers of very young children with type 1 diabetes. Seventy-five mothers of children aged 2 through 5 years diagnosed with type 1 diabetes completed a self-report assessment battery, including well-standardized measures of hope and anxiety. As expected, analyses indicated an inverse relation between mothers' hope and anxiety. In addition, after controlling for significant medical and demographic covariates, hope remained a negative contributor to maternal anxiety (p < .001). This suggests that having an individual disposition that includes high hope may serve as a protective factor against psychological distress in mothers of very young children with diabetes. Examining levels of hope in this population may identify parents l...

Careful attention to self-care behaviors is crucial to achieving good health outcomes in children and adolescents with type 1 diabetes. Despite the unequivocal research findings that adolescence is a time of poor metabolic control among affected individuals, there have been few prevention efforts geared toward health promotion in this age group. The diabetes education, counseling and information delivery, and evaluation (DECIDE) Program is intended to prevent the deterioration of self-care behaviors often evident during adolescence by intervening during the earlier, more stable time period of preadolescence. This paper describes the foundation for the DECIDE Program and outlines intervention development, current study recruitment, and preliminary program evaluation data. Findings indicate that enrollment into the program is feasible among children and their parents; early feedback suggests that parents and children are also satisfied with their participation. The challenges of conducting randomized controlled trials in health promotion for childhood diabetes are discussed, and ideas are offered for future research directions to improve the integration of child health psychology with public health approaches in this population.

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 children's 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 satisfac...

Thalassemia, a chronic blood disease, necessitates life-long adherence to blood transfusions and chelation therapy to reduce iron overload. We examine stability of health-related quality of life (HRQOL) in thalassemia and adherence to chelation therapy over time, especially after changes in chelator choice.Thalassemia Longitudinal Cohort participants in the USA, UK, and Canada completed the SF-36v2 (ages 14+) and the PF-28 CHQ (parents of children14 years). Chelation adherence was defined as self-reported percent of doses administered in the last 4 weeks.Two hundred and fifty-eight adults/adolescents (mean 29.7 years) and 133 children (mean 8.5 years) completed a mean of 2.8-years follow-up. Children made few chelator changes, whereas a mean of 2.2 changes was observed among the 37% of adults/adolescents who made chelator changes, mainly due to patient preference or medical necessity. Physical HRQOL improved among those with lower iron burden (better health status) at baseline who made a single change in chelator, but declined among participants with multiple changes and/or high iron burden (worse health status). Mental health improved among participants with lower iron burden, but iron overload was negatively associated with social functioning. Adherence did not significantly change over follow-up except for an increase after a change from deferoxamine (DFO) infusion to oral deferasirox (p = 0.03). Predictors of lower adherence for adults/adolescents at follow-up included side effects, smoking, younger age, problems preparing DFO, increased number of days per week DFO prescribed, and lower physical quality of life .Strategies to balance medical needs with family, work, and personal life may assist in adherence.

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.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.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.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.

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.

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.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.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).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.

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.

Deferasirox, the only oral iron chelator approved in the US and Canada, achieved a pediatric label indication down to 2 years of age. FDA-mandated post-marketing safety surveillance in children under age 6 is ongoing. We wish to raise a non-safety-related concern with deferasirox chelation in very young children (2–5 years old). Specifically, the circumstances required for reliable daily ingestion of deferasirox do not mesh well with the developmental characteristics common in young children, which may limit adherence and cause parental distress. We review developmental challenges associated with oral chelation in this age group and provide suggestions to improve adherence in this population. Pediatr Blood Cancer. 2010;55:603–605. © 2010 Wiley-Liss, Inc.

Although fathers’ stress has been shown to have important implications for children’s health and well-being, few studies of children with type 1 diabetes have considered paternal parenting stress. The current study contributes to the literature by exploring correlates of fathers’ pediatric parenting stress in a sample of young children with type 1 diabetes. Forty-three fathers of children 2–6 years old with type 1 diabetes completed self-report questionnaires examining pediatric parenting stress, child behavior, participation in diabetes management tasks, and parental psychological resources. Results of multiple regression show that fathers’ pediatric parenting stress is positively associated with state anxiety and mother-reported difficult child behavior. These findings suggest that fathers may experience parenting stress differently than mothers, and that their experiences may have implications not only for their own level of anxiety, but also for their children’s behavior.

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.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).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).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.

Background Understanding patients’ views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy. Methods The 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. Results Of 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 Conclusions Despite 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 identifier NCT00661804