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Watertown, MA, United States

Trachtenberg F.L.,New England Research Institutes, Inc.
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation | Year: 2014

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 children <14 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.


Abuse is associated with a wide variety of health problems, yet comprehensive population-based data are scant. Existing literature focuses on a single type of abuse, population, or lifestage. Using a racially/ethnically diverse community-based sample, we document the prevalence of physical, emotional, and sexual abuse by lifestage and gender, assess variation in abuse by sociodemographics; establish overlap of abuses; and examine childhood abuse relationships with abuse in adulthood. Prevalence of abuse ranges from 15% to 27%; women report more adulthood emotional abuse and lifetime sexual abuse than men; reports of abuse can vary by race/ethnicity and poverty status, particularly in women; there is overlap between types of abuse; and a history of childhood abuse is associated with a greater risk of abuse as an adult.


Grant
Agency: Department of Health and Human Services | Branch: | Program: SBIR | Phase: Phase I | Award Amount: 150.00K | Year: 2014

PROJECT SUMMARY/ABSTRACT Type 1 diabetes (T1DM) is the most common chronic illness in children, affecting 1 in 400 with evidence that its prevalence is increasing worldwide. Parents of children with T1DM are responsible for a labor-intensive and complicated daily regimen that has been described as an overwhelming experience, requiring constant vigilance. The prevalence of anxiety symptoms for parents of children with T1DM range from 21-59%; depressive symptoms from 10-74%; psychological distress from 29-33%; and symptoms of Post Traumatic Stress Disorder (PTSD) from 19-24%. Parental psychological distress has negative health implications for the parent, the overall functioning of the family, the psychological adjustment of their child with T1DM, and diabetes management. Combined with parental stress, children (as they reach adolescence) have an increasing need for autonomy in T1DM management, creating additional concerns about good metabolic control. Most health care visits are thus focused on the adolesce


Grant
Agency: Department of Health and Human Services | Branch: National Institutes of Health | Program: SBIR | Phase: Phase II | Award Amount: 514.33K | Year: 2016

DESCRIPTION provided by applicant Type diabetes T D is one of the most common chronic illnesses in children affecting in with evidence that its prevalence is increasing worldwide The prevalence of T D in adolescents is approximately percent White percent Hispanic and percent Black Parents of children with T D are responsible for a labor intensive and complicated daily regimen that has been described as an overwhelming experience requiring constant vigilance Intensive management of T D requires frequent blood glucose monitoring multiple insulin injections or use of an insulin pump frequent alterations in insulin dose to match changing diet and activity patterns and regular visits to health care providers This attention to their childandapos s health manifests in elevated rates of parental perception of stress and increased risk for depression and anxiety The prevalence of anxiety symptoms for parents of children with T D range from percent depressive symptoms from percent psychological distress from percent and posttraumatic stress symptoms from percent Parental psychological distress has negative health implications for the parent the overall functioning of the family the psychological adjustment of their child with T D diabetes management and child metabolic control The goal of this application is to complete the psycho educational web based program for parents of adolescents with T D Type Teamwork which will help to decrease parental perceived stress and distress promote parental adjustment to the developmental transitions in adolescence support adolescent autonomy and transfer of diabetes responsibility from parent to adolescent decrease family conflict and maintain metabolic control during adolescence We propose to complete two major Aims in Phase II Specific Aim Develop the Type Teamwork program for use on computer tablet or smartphone based on the activities completed in Phase I Six content themes have been identified as important to parents and providers Feasibility assessment has provided support of these content themes as well as substantive recommendations to ensure content and interactivity is engaging and meets the needs of parents of children with T D as well as health care providers We will use an iterative process of development and evaluation collaborating with our technology team parent advisors and clinical consultants to ensure development of a quality product and to submit a peer reviewed manuscript for publication of the results Specific Aim Evaluate the Type Teamwork program through a modest randomized clinical trial We will determine the effect of the program on parent psychosocial outcomes stress depression and anxiety adolescent autonomy parent adolescent responsibility for T D management family conflict and adolescent metabolic control Results will be presented at diabetes meetings published in top tier journals to provide clinical and scientific evidence of the newly developed program and widely disseminated per the commercialization and marketing plan PUBLIC HEALTH RELEVANCE Type Diabetes T DM is a common chronic illness in children which presents difficult and often stressful management concerns for parents As children approach adolescence this burden increases with the desire for independence and self management No tool exists that addresses in a user friendly easy to access and socio culturally appropriate way the psychosocial needs of parents as they move through this transition This program targets the parents to help them at the very point where this transition i occurring


Grant
Agency: Department of Health and Human Services | Branch: National Institutes of Health | Program: SBIR | Phase: Phase II | Award Amount: 1.30M | Year: 2015

DESCRIPTION provided by applicant andquot The PHS Syphilis Study Guatemala Willowbrook radiation experiments andquot Despite decades of work to improve the safety of research subjects these words bring to mind images of fear and the mistreatment of potential research participants including children Excellence in research is essential to our health and quality of life yet while many potential participants recognize the need for clinical studies they avoid participating Recruitment for pediatric clinical trials presents unique challenges including a lak of information for parents faced with a decision about whether to allow a child to participate Despite best efforts of the National Institutes of Health to help improve inform and standardize clinical trial recruitment these efforts are targeted to parents who are asked to involve their chid in a clinical trial Misperceptions fears and myths about the well known but not representative mistakes misconduct or abuse from the earliest days of clinical research persist regardless of these efforts With demonstrated need for information about clinical research the importance of clinical research to reduce social justice and disparities and the vast gap between treatments used with children but never tested in children no national broadcast program yet exists which has tackled the complex and important issue of clinical studies particularly in pediatric populations The goal of this Phase Il SBIR application is to develop the one hour original narrative documentary style film entitled No More Hand Me Downs Clinical Research and Children To accomplish this goal we will complete four major Aims Aim To meet with clinical experts and identify families from related trials for the complete film Aim Develop the minute broadcast film Aim Conduct an evaluation of the film in preparation for national broadcast Aim Conduct national broadcast and outreach operations in collaboration with WebMD PUBLIC HEALTH RELEVANCE Despite decades of work to improve the safety of research subjects fear about mistreatment of potential research participants remains a concern for many Mistrust as a result of early well publicized abuses continues to outweigh the many rules and requirements now in place to ensure high ethical standards These fears are particularly entrenched with minority and underserved populations such as children Excellence in research is essential to our health and quality of life yet while many potential participants recognize the need for clinical studies they avoid participating

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