Understanding Older Adults' Experiences With Technologies for Health Self-management: Interview Study.

BACKGROUND: Many older adults now use technologies such as wearable devices and telehealth services to support their health and well-being while living independently at home. However, older adults vary in how they use these technologies, and there is a lack of knowledge regarding the motivations that influence their acceptance and use of health-related technologies in home environments. OBJECTIVE: This study aimed to understand the types of technologies that older adults use to support their health and the factors that motivate them to use their chosen technologies to support their health. In addition, we aimed to understand the factors that enable the effective use of technologies for health self-management and to identify the barriers that can negatively affect the adoption of technologies. METHODS: A total of 22 older adults participated in semistructured interviews regarding their experiences of using technologies for health self-management. Interview transcripts were analyzed through an in-depth thematic analysis. RESULTS: The interviews revealed that a range of technologies, such as videoconferencing software, fitness trackers, and other devices, were being used by older adults to support their health. Interviews showed that participants were motivated to use technologies to monitor health issues, to stay active and connected, and to record and change their behavior in the light of foreseen risks related to their future health status. Enablers that facilitated the effective use of technologies include social and organizational influence, convenient access to health care and safety provided by the technology, and easy setup and low cost of the technology. Barriers include information overload and a sense of futility about future health decline; telehealth being an inadequate substitute for in-person consultation; concerns about trust related to privacy and accuracy; and technologies being stigmatizing, uncomfortable to use, expensive, and unfamiliar. CONCLUSIONS: This study suggested that older adults were using a variety of technologies to prevent or prepare for future health decline, evidencing a resilient attitude toward health and aging. In addition, older adults were willing to continue using the technology when there was a perceived need. The enabler mentioned by most participants was the social and organizational influence that included health care staff, family, friends, and organizations. This analysis provides a better understanding of how older adults use technologies to support their health and can guide the provision of appropriate health technologies for them.

Enhancing Therapeutic Processes in Videoconferencing Psychotherapy: Interview Study of Psychologists' Technological Perspective.

BACKGROUND: The COVID-19 pandemic caused a surge in the use of telehealth platforms. Psychologists have shifted from face-to-face sessions to videoconference sessions. Therefore, essential information that is easily obtainable via in-person sessions may be missing. Consequently, therapeutic work could be compromised. OBJECTIVE: This study aimed to explore the videoconference psychotherapy (VCP) experiences of psychologists around the world. Furthermore, we aimed to identify technological features that may enhance psychologists' therapeutic work through augmented VCP. METHODS: In total, 17 psychologists across the world (n=7, 41% from Australia; n=1, 6% from England; n=5, 29% from Italy; n=1, 6% from Mexico; n=1, 6% from Spain; and n=2, 12% from the United States) were interviewed. We used thematic analysis to examine the data collected from a sample of 17 psychologists. We applied the Chaos Theory to interpret the system dynamics and collected details about the challenges posed by VCP. For collecting further information about the technology and processes involved, we relied on the Input-Process-Output (IPO) model. RESULTS: The analysis resulted in the generation of 9 themes (input themes: psychologists' attitude, trust-reinforcing features, reducing cognitive load, enhancing emotional communication, and engaging features between psychologists and patients; process themes: building and reinforcing trust, decreasing cognitive load, enhancing emotional communication, and increasing psychologist-patient engagement) and 19 subthemes. Psychologists found new strategies to deal with VCP limitations but also reported the need for more technical control to facilitate therapeutic processes. The suggested technologies (eye contact functionality, emergency call functionality, screen control functionality, interactive interface with other apps and software, and zooming in and out functionality) could enhance the presence and dynamic nature of the therapeutic relationship. CONCLUSIONS: Psychologists expressed a desire for enhanced control of VCP sessions. Psychologists reported a decreased sense of control within the therapeutic relationship owing to the influence of the VCP system. Great control of the VCP system could better approximate the critical elements of in-person psychotherapy (eg, observation of body language). To facilitate improved control, psychologists would like technology to implement features such as improved eye contact, better screen control, emergency call functionality, ability to zoom in and out, and an interactive interface to communicate with other apps. These results contribute to the general perception of the computer as an actual part of the VCP process. Thus, the computer plays a key role in the communication, rather than remaining as a technical medium. By adopting the IPO model in the VCP environment (VCP-IPO model), the relationship experience may help psychologists have more control in their VCP sessions.

Health Misinformation Across Multiple Digital Ecologies: Qualitative Study of Data From Interviews With International Students.

BACKGROUND: Transient migrants such as international students have received limited support from host country governments throughout the COVID-19 pandemic. An increase in misinformation, resulting in poor health outcomes for individuals, may impact an already vulnerable group. OBJECTIVE: Existing research examines the spread of misinformation. Similarly, there is extensive literature on the health information behavior of international students. However, there is a gap in the literature focusing on international students' interaction with health misinformation. This exploratory research aims to address this gap by examining international students' interaction with health misinformation during the COVID-19 pandemic. METHODS: A total of 11 participants took part in semistructured interviews and a health misinformation-identification exercise via Zoom. The data collected were subjected to qualitative thematic analysis. Multiple rounds of coding, checked by other coders, revealed 2 themes and 6 subthemes. RESULTS: The 2 main themes that emerged were (1) approaches to dealing with health misinformation and (2) how international students navigate across multiple digital ecologies. Results show that international students who draw on multiple digital ecologies for information reliably identify misinformation, suggesting that the use of multiple digital ecologies may have a protective effect against health misinformation. CONCLUSIONS: Findings show that international students encounter health misinformation across multiple digital ecologies, and they also compare information across multiple ecologies. This comparison may support them in identifying health misinformation. Thus, the findings of this study combat narratives of international students' susceptibility to misinformation.

A Perspective on Client-Psychologist Relationships in Videoconferencing Psychotherapy: Literature Review.

BACKGROUND: During the COVID-19 pandemic, people have been encouraged to maintain social distance. Technology helps people schedule meetings as remote videoconferencing sessions rather than face-to-face interactions. Psychologists are in high demand because of an increase in stress as a result of COVID-19, and videoconferencing provides an opportunity for mental health clinicians to treat current and new referrals. However, shifting treatment from face-to-face to videoconferencing is not simple: both psychologists and clients miss in-person information cues, including body language. OBJECTIVE: This review proposes a new theoretical framework to guide the design of future studies examining the impact of a computer as a mediator of psychologist-client relationships and the influence of videoconferencing on the relationship process. METHODS: We conducted a literature review including studies focused on communication and key concepts of the therapeutic relationship and therapeutic alliance. RESULTS: Studies have reported that clients are generally satisfied with videoconference therapy in terms of the relationship with their therapists and the establishment of the therapeutic alliance. Conversely, studies indicate that psychologists continue to highlight difficulties in establishing the same quality of therapeutic relationship and therapeutic alliance. The contrasting experiences might underlie the differences in the type of emotional and cognitive work required by both actors in any therapy session; furthermore, the computer seems to take part in their interaction not only as a vehicle to transmit messages but also as an active part of the communication. A new model of interaction and relationship is proposed, taking into account the presence of the computer, along with further hypotheses. CONCLUSIONS: It is important to consider the computer as having an active role in the client-psychologist relationship; thus, it is a third party to the communication that either assists or interferes with the interaction between psychologists and clients.

Barriers to and Facilitators of Iron Therapy in Children with Iron Deficiency Anemia.

OBJECTIVE: To characterize barriers to and facilitators of successful iron therapy in young children with iron deficiency anemia (IDA) from an in-depth parental perspective. STUDY DESIGN: Prospective, mixed methods study of children age 9 months to 4 years with a diagnosis of nutritional IDA by clinical history and laboratory criteria and their parents. Clinical data were obtained from the electronic health record. Semistructured interviews focused on knowledge of IDA, clinical effects, experience with iron therapies, and motivation were conducted with the parent who identified as the child's primary caregiver. RESULTS: Twenty patient-parent dyads completed the study; 80% (n = 16) identified as Hispanic/Latino (white). Patients' median age was 23 months (50% male); median initial hemoglobin concentration was 8.2 g/dL and duration of oral iron therapy was 3 months. Parents' median age was 29 years (85% female); 8 interviews (40%) were conducted in Spanish. Barriers included difficulty in administering oral iron owing to side effects and poor taste. Facilitators included provision of specific instructions; support from healthcare providers and additional caregivers at home; motivation to benefit child's health, which was strengthened by strong emotional reactions (ie, stress, anxiety) to therapy and follow-up; and an appreciation of child's improvement with successful completion of therapy. CONCLUSIONS: Our findings support the need for interventions designed to promote oral iron adherence in children with IDA. Rather than focusing on knowledge content related to IDA, interventions should aim to increase parental motivation by emphasizing the health benefits of adhering to iron therapy and avoiding more invasive interventions.

Barriers and facilitators of risk-based health care for adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

BACKGROUND: Optimal risk-based survivor health care includes surveillance for late effects and education targeted at reducing or preventing risky health behaviors. Understanding the reasons for a lack of risk-based follow-up care is essential. METHODS: Adult participants from the Childhood Cancer Survivor Study were surveyed about having a cancer-related visit in the past 2 years and the likelihood of having a cancer-related visit in the future. Additional factors thought to be related to the primary outcomes were also assessed. RESULTS: Nine hundred seventy-five survivors completed the survey. Twenty-seven percent (95% confidence interval [CI], 24%-30%) had a cancer-related medical visit in the previous 2 years, and 41% (95% CI, 38%-44%) planned to have such a visit within the next 2 years. The likelihood of having had a cancer-related visit within the last 2 years was higher among survivors assigning greater importance to these visits (relative risk [RR], 1.2; 95% CI, 1.1-1.3), perceiving greater susceptibility to health problems (RR, 1.2; 95% CI, 1.1-1.3), having a moderate to life-threatening chronic health problem related to their cancer (RR, 2.1; 95% CI, 1.7-2.7), seeing a primary care provider for a cancer-related problem (RR, 1.3; 95% CI, 1.0-1.6), having a cancer treatment summary (RR, 1.3; 95% CI, 1.0-1.6), and endorsing greater confidence in physicians' abilities to address questions and concerns (RR, 1.2; 95% CI, 1.0-1.3). CONCLUSIONS: Educational interventions improving awareness of treatment history and susceptibility to cancer-related late effects and corresponding risk-based care are likely to be beneficial for survivors of childhood cancers.

American Society of Hematology 2019 guidelines for immune thrombocytopenia.

BACKGROUND: Despite an increase in the number of therapies available to treat patients with immune thrombocytopenia (ITP), there are minimal data from randomized trials to assist physicians with the management of patients. OBJECTIVE: These evidence-based guidelines of the American Society of Hematology (ASH) are intended to support patients, clinicians, and other health care professionals in their decisions about the management of ITP. METHODS: In 2015, ASH formed a multidisciplinary guideline panel that included 8 adult clinical experts, 5 pediatric clinical experts, 2 methodologists with expertise in ITP, and 2 patient representatives. The panel was balanced to minimize potential bias from conflicts of interest. The panel reviewed the ASH 2011 guideline recommendations and prioritized questions. The panel used the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach, including evidence-to-decision frameworks, to appraise evidence (up to May 2017) and formulate recommendations. RESULTS: The panel agreed on 21 recommendations covering management of ITP in adults and children with newly diagnosed, persistent, and chronic disease refractory to first-line therapy who have non-life-threatening bleeding. Management approaches included: observation, corticosteroids, IV immunoglobulin, anti-D immunoglobulin, rituximab, splenectomy, and thrombopoietin receptor agonists. CONCLUSIONS: There was a lack of evidence to support strong recommendations for various management approaches. In general, strategies that avoided medication side effects were favored. A large focus was placed on shared decision-making, especially with regard to second-line therapy. Future research should apply standard corticosteroid-dosing regimens, report patient-reported outcomes, and include cost-analysis evaluations.

Privacy in Aged Care Monitoring Devices (ACMD): The Developers' Perspective.

"Aging in place" refers to older adults remaining in their home as they age to maintain their independence and attachment with their community. The preference to "age in place" has led to increasing use of aged care monitoring devices to monitor the health, safety and wellbeing of older adults while living alone in their home. However, these devices raise privacy concerns as they are designed to collect, use and share sensitive data from the older adults' private life in order to provide its real-time monitoring capabilities. This study involved interviewing developers from companies that design or deploy aged care monitoring devices about how they view privacy. The study found that developers mostly link privacy to unauthorized/uncontrolled access to users' data, data security risks and human errors. We advocate aged care monitoring devices companies to expand their view of privacy and to adopt a sociotechnical approach when addressing privacy in their developed devices. This involves considering human issues when addressing privacy, rather than focusing exclusively on technical solutions for privacy problems.

Factor VIII prophylaxis effects outweigh other hemostasis contributors in predicting severe haemophilia A joint outcomes.

INTRODUCTION: The Joint Outcome Study (JOS) demonstrated that previously untreated children with severe haemophilia A treated with prophylactic factor VIII (FVIII) concentrate had superior joint outcomes at age 6 years compared to those children treated episodically for bleeding. However, variation in joint outcome within each treatment arm was not well explained. AIM: In this study, we sought to better understand variation in joint outcomes at age 6 years in participants of the JOS. METHODS: We evaluated the influence of FVIII half-life, treatment adherence, constitutional coagulant and anticoagulant proteins, and global assays on joint outcomes (number of joint bleeds, total number of bleeds, total MRI score and joint physical exam score). Logistic regression was used to evaluate the association of variables with joint failure status on MRI, defined as presence of subchondral cyst, surface erosion or joint-space narrowing. Each parameter was also correlated with each joint outcome using Spearman correlations. RESULTS: Prophylaxis treatment arm and FVIII trough were each found to reduce risk of joint failure on univariate logistic regression analysis. When controlling for treatment arm, FVIII trough was no longer significant, likely because of the high level of covariation between these variables. We found no consistent correlation between any laboratory assay performed and any joint outcome parameter measured. CONCLUSION: In the JOS, the effect of prescribed prophylactic FVIII infusions on joint outcome overshadowed the contribution of treatment adherence, FVIII half-life, global assays of coagulation and constitutional coagulation proteins. (ClinicalTrials.gov number, NCT00207597).

Second-line treatments in children with immune thrombocytopenia: Effect on platelet count and patient-centered outcomes.

Immune thrombocytopenia (ITP) is an autoimmune bleeding disorder with isolated thrombocytopenia and hemorrhagic risk. While many children with ITP can be safely observed, treatments are often needed for various reasons, including to decrease bleeding, or to improve health related quality of life (HRQoL). There are a number of available second-line treatments, including rituximab, thrombopoietin-receptor agonists, oral immunosuppressive agents, and splenectomy, but data comparing treatment outcomes are lacking. ICON1 is a prospective, multi-center, observational study of 120 children starting second-line treatments for ITP designed to compare treatment outcomes including platelet count, bleeding, and HRQoL utilizing the Kids ITP Tool (KIT). While all treatments resulted in increased platelet counts, romiplostim had the most pronounced effect at 6 months (P = .04). Only patients on romiplostim and rituximab had a significant reduction in both skin-related (84% to 48%, P = .01 and 81% to 43%, P = .004) and non-skin-related bleeding symptoms (58% to 14%, P = .0001 and 54% to 17%, P = .0006) after 1 month of treatment. HRQoL significantly improved on all treatments. However, only patients treated with eltrombopag had a median improvement in KIT scores at 1 month that met the minimal important difference (MID). Bleeding, platelet count, and HRQoL improved in each treatment group, but the extent and timing of the effect varied among treatments. These results are hypothesis generating and help to improve our understanding of the effect of each treatment on specific patient outcomes. Combined with future randomized trials, these findings will help clinicians select the optimal second-line treatment for an individual child with ITP.

Disorders of Iron Metabolism: New Diagnostic and Treatment Approaches to Iron Deficiency.

Iron deficiency anemia is the leading cause of anemia worldwide and affects many young children and adolescent girls in the United States. Its signs and symptoms are subtle despite significant clinical effects. Iron deficiency anemia is diagnosed clinically by the presence of risk factors and microcytic anemia. Improvement following a trial of oral iron therapy is confirmative. An array of iron laboratory tests is available with variable indications. Clinical trial and iron absorption data support a shift to lower-dose oral iron therapy. Intravenous iron should be considered in children who fail oral iron or who have more complex disorders.

Privacy and the Internet of Things (IoT) Monitoring Solutions for Older Adults: A Review.

The rapid increase in the number of older adults in developed countries has raised concerns about their well-being and increasing need for healthcare. New technologies, including Internet of Things, are being used to monitor older adults' health and activities, thus enabling them to live safely and independently at home as they age. However, Internet of Things monitoring solutions create privacy challenges that need to be addressed. This review examines how privacy has been conceptualised in studies proposing new Internet of Things solutions for monitoring older adults. The literature reviewed mostly links privacy with information security and unauthorised accessibility threats. There is a limited consideration of other aspects of privacy such as confidentiality and secondary use of users' information. We argue that developers of Internet of Things solutions that aim to monitor and collect health data about older adults need to adopt an expanded view of privacy. This will ensure that safeguards are built in to Internet of Things devices to protect and maintain users' privacy while also enabling the appropriate sharing of data to support older adults' safety and wellbeing.

Physician decision making in selection of second-line treatments in immune thrombocytopenia in children.

Immune thrombocytopenia (ITP) is an acquired autoimmune bleeding disorder which presents with isolated thrombocytopenia and risk of hemorrhage. While most children with ITP promptly recover with or without drug therapy, ITP is persistent or chronic in others. When needed, how to select second-line therapies is not clear. ICON1, conducted within the Pediatric ITP Consortium of North America (ICON), is a prospective, observational, longitudinal cohort study of 120 children from 21 centers starting second-line treatments for ITP which examined treatment decisions. Treating physicians reported reasons for selecting therapies, ranking the top three. In a propensity weighted model, the most important factors were patient/parental preference (53%) and treatment-related factors: side effect profile (58%), long-term toxicity (54%), ease of administration (46%), possibility of remission (45%), and perceived efficacy (30%). Physician, health system, and clinical factors rarely influenced decision-making. Patient/parent preferences were selected as reasons more often in chronic ITP (85.7%) than in newly diagnosed (0%) or persistent ITP (14.3%, P = .003). Splenectomy and rituximab were chosen for the possibility of inducing long-term remission (P < .001). Oral agents, such as eltrombopag and immunosuppressants, were chosen for ease of administration and expected adherence (P < .001). Physicians chose rituximab in patients with lower expected adherence (P = .017). Treatment choice showed some physician and treatment center bias. This study illustrates the complexity and many factors involved in decision-making in selecting second-line ITP treatments, given the absence of comparative trials. It highlights shared decision-making and the need for well-conducted, comparative effectiveness studies to allow for informed discussion between patients and clinicians.

Predictors of remission in children with newly diagnosed immune thrombocytopenia: Data from the Intercontinental Cooperative ITP Study Group Registry II participants.

BACKGROUND: Immune thrombocytopenia (ITP) during childhood spontaneously remits in up to 80% of children. Predictors of remission are not well understood. PROCEDURE: We analyzed data from Intercontinental Cooperative ITP Study Group (ICIS) Registry II, a large prospective cohort of children with ITP, to investigate factors that might predict remission. RESULTS: In ICIS Registry II, 705 patients had data collected through 12 months following diagnosis, with 383 patients having data available at 24 months as well. Younger age and pharmacologic treatment at diagnosis were significantly associated with disease resolution at 12 and 24 months (P < 0.0001 for both) as was bleeding at diagnosis (P < 0.0001 and P = 0.0213, respectively). Gender and platelet count at diagnosis were not significantly correlated with remission. In the multivariable analysis, remission at 12 months was associated with younger age, higher bleeding grade at diagnosis, and treatment with a combination of intravenous immunoglobulin (IVIG) and corticosteroids at diagnosis. Only younger age and treatment with IVIG and steroids in combination at diagnosis were associated with remission at 24 months. Patients <1 year of age had the highest odds of achieving remission at both 12 months (OR 4.7, 95% CI: 2.0-10.6) and 24 months (OR 7.0, 95% CI: 2.3-20.8). CONCLUSIONS: Younger age, bleeding severity at diagnosis, and initial treatment with a combination of corticosteroids and IVIG are associated with remission at 12 months in the ICIS Registry II. Patients <1 year of age have the highest likelihood of remission. The relationship of bleeding and treatment at diagnosis requires further study to clarify whether these are independent predictors of remission.

Effect of Low-Dose Ferrous Sulfate vs Iron Polysaccharide Complex on Hemoglobin Concentration in Young Children With Nutritional Iron-Deficiency Anemia: A Randomized Clinical Trial.

Importance: Iron-deficiency anemia (IDA) affects millions of persons worldwide, and is associated with impaired neurodevelopment in infants and children. Ferrous sulfate is the most commonly prescribed oral iron despite iron polysaccharide complex possibly being better tolerated. Objective: To compare the effect of ferrous sulfate with iron polysaccharide complex on hemoglobin concentration in infants and children with nutritional IDA. Design, Setting, and Participants: Double-blind, superiority randomized clinical trial of infants and children aged 9 to 48 months with nutritional IDA (assessed by history and laboratory criteria) that was conducted in an outpatient hematology clinic at a US tertiary care hospital from September 2013 through November 2015; 12-week follow-up ended in January 2016. Interventions: Three mg/kg of elemental iron once daily as either ferrous sulfate drops or iron polysaccharide complex drops for 12 weeks. Main Outcomes and Measures: Primary outcome was change in hemoglobin over 12 weeks. Secondary outcomes included complete resolution of IDA (defined as hemoglobin concentration >11 g/dL, mean corpuscular volume >70 fL, reticulocyte hemoglobin equivalent >25 pg, serum ferritin level >15 ng/mL, and total iron-binding capacity <425 µg/dL at the 12-week visit), changes in serum ferritin level and total iron-binding capacity, adverse effects. Results: Of 80 randomized infants and children (median age, 22 months; 55% male; 61% Hispanic white; 40 per group), 59 completed the trial (28 [70%] in ferrous sulfate group; 31 [78%] in iron polysaccharide complex group). From baseline to 12 weeks, mean hemoglobin increased from 7.9 to 11.9 g/dL (ferrous sulfate group) vs 7.7 to 11.1 g/dL (iron complex group), a greater difference of 1.0 g/dL (95% CI, 0.4 to 1.6 g/dL; P < .001) with ferrous sulfate (based on a linear mixed model). Proportion with a complete resolution of IDA was higher in the ferrous sulfate group (29% vs 6%; P = .04). Median serum ferritin level increased from 3.0 to 15.6 ng/mL (ferrous sulfate) vs 2.0 to 7.5 ng/mL (iron complex) over 12 weeks, a greater difference of 10.2 ng/mL (95% CI, 6.2 to 14.1 ng/mL; P < .001) with ferrous sulfate. Mean total iron-binding capacity decreased from 501 to 389 µg/dL (ferrous sulfate) vs 506 to 417 µg/dL (iron complex) (a greater difference of -50 µg/dL [95% CI, -86 to -14 µg/dL] with ferrous sulfate; P < .001). There were more reports of diarrhea in the iron complex group than in the ferrous sulfate group (58% vs 35%, respectively; P = .04). Conclusions and Relevance: Among infants and children aged 9 to 48 months with nutritional iron-deficiency anemia, ferrous sulfate compared with iron polysaccharide complex resulted in a greater increase in hemoglobin concentration at 12 weeks. Once daily, low-dose ferrous sulfate should be considered for children with nutritional iron-deficiency anemia. Trial Registration: clinicaltrials.gov Identifier: NCT01904864.

Patterns and influences in health-related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort.

BACKGROUND: Relationships between clinical/demographic factors and health-related quality of life (HRQoL) in childhood immune thrombocytopenia (ITP) remain poorly understood. Recent studies reveal conflicting information about factors that contribute to HRQoL. METHODS: This was a prospective, single-institution, cohort study of newly diagnosed children with ITP. Serial evaluations of HRQoL were performed using the Kid's ITP Tools (KIT), scored from 0 (worst) to 100 (best), at enrollment and 1 week, 6 months, and 12 months following diagnosis. All visits included bleeding severity grading. Relationships between HRQoL and platelet count, treatment, bleeding severity, and course of disease were examined. RESULTS: A total of 99 children with newly diagnosed ITP were evaluable for analysis. KIT scores were low at diagnosis for parents (median 26, range 15-43) and children (median 65, range 55-81) and were not influenced by age or platelet count. At diagnosis, children who received treatment had lower platelet counts (P = 0.005), more severe hemorrhage (P < 0.0125), and lower HRQoL by parent, child, and proxy reporting (P < 0.05). Oral bleeding negatively impacted proxy-reported disease burden at diagnosis (P = 0.01). Persistence of disease and lower platelet counts at 6 and 12 month visits were the only factors noted to consistently impact quality of life beyond diagnosis for both parents and children. CONCLUSIONS: HRQoL is low at diagnosis but significantly improves over time. Patients with ongoing disease and lower platelet counts continue to have significant disease burden.

Iron Deficiency Anemia in Adolescents Who Present with Heavy Menstrual Bleeding.

STUDY OBJECTIVE: To assess the clinical severity and initial treatment of iron deficiency anemia (IDA) in female adolescents with heavy menstrual bleeding (HMB) in our center. DESIGN: Retrospective cohort study of electronic medical records via search of administrative records using International Classification of Diseases Ninth Revision codes for IDA or unspecified anemia and disorders of menstruation. SETTING: Children's Medical Center in Dallas, Texas. PARTICIPANTS: One hundred seven patients with HMB and concomitant IDA (median age, 14.4 years) who presented to the outpatient, emergency department, and/or inpatient settings. RESULTS: The median initial hemoglobin concentration for all patients (n = 107) was 7.4 g/dL, and most (74%, n = 79) presented to the emergency department or via inpatient transfer. Symptomatic IDA was treated with blood transfusion in 46 (43%, n = 46). Ferrous sulfate was the most commonly prescribed oral iron therapy. Seven patients received intravenous iron therapy either initially or after oral iron treatment failure. Combined oral contraceptives were commonly prescribed for abnormal uterine bleeding, yet 10% of patients (n = 11) received no hormonal therapy during their initial management. Evaluation for underlying bleeding disorders was inconsistent. CONCLUSION: Severe anemia because of IDA and HMB resulting in urgent medical care, including hospitalization and blood transfusion, is a common but underemphasized problem in adolescent girls. In addition to prevention and early diagnosis, meaningful efforts to improve initial management of adolescents with severe HMB and IDA are necessary.

Intravenous Ferric Carboxymaltose in Children with Iron Deficiency Anemia Who Respond Poorly to Oral Iron.

OBJECTIVE: To assess the benefits and risks of intravenous (IV) ferric carboxymaltose (FCM) in children with iron deficiency anemia (IDA). STUDY DESIGN: In a retrospective cohort study of patients seen at our center, we identified all FCM infusions in children with IDA over a 12-month period through a query of pharmacy records. Clinical data, including hematologic response and adverse effects, were extracted from the electronic medical record. RESULTS: A total of 116 IV FCM infusions were administered to 72 patients with IDA refractory to oral iron treatment (median age, 13.7 years; range, 9 months to 18 years). Median preinfusion and postinfusion hemoglobin values were 9.1 g/dL and 12.3 g/dL, respectively (at 4-12 weeks after the initial infusion; n = 53). Sixty-five patients (84%) experienced no adverse effects. Minor transient complications were encountered during or immediately after 7 infusions. CONCLUSION: FCM administered as a short IV infusion without a test dose proved to be safe and highly effective in a small yet diverse population of infants, children, and adolescents with IDA refractory to oral iron therapy.