Factors that influence health-related quality of life in adolescents with sickle cell disease

The chronic course of sickle cell disease (SCD) can be particularly burdensome for adolescents and can have a negative impact on health-related quality of life (HRQOL) during the time of transitioning from childhood to adulthood. Additionally, family functioning has been identified as an important predictor for how well children and adolescents cope with and adapt to SCD. Although there have been major medical advances that have benefited affected individuals, SCD imposes significant demands on affected children and their families. In light of the progress in management and treatment of SCD, and the developmental challenges associated with adolescence, it is an opportune time to assess HRQOL and family functioning in this population. The aims of the research were to: (1) appraise existing research related to family functioning and child outcomes in families of children and adolescents with SCD, (2) identify measures used to assess HRQOL, and (3) describe factors that influence HRQOL in adolescents with SCD. This is a manuscript style dissertation including 3 manuscripts encompassing a single program of research In manuscript 1, a total of 23 family functioning studies were identified. The findings indicated that families with high levels of family functioning were associated with affected children who had better adaptive outcomes. Low levels of family functioning were associated with children who had poorer adaptive outcomes. Family functioning assessments were influenced by issues such as number and relationships of informants, study designs, family functioning measures, and coping mechanisms. A total of seven HRQOL measures were identified among 25 studies in manuscript 2. The PedsQL emerged as the most flexible and useful HRQOL measurement for children and adolescents with SCD. Finally, in manuscript 3, a secondary data analysis was conducted on 482 adolescents to determine inter-relationships of HRQOL and influencing factors. Findings indicated that factors associated with reduced HRQOL included: (1) female gender compared to male gender, and (2) history of transfusions compared to no history. Factors associated with better HRQOL included: (1) mild disease severity compared to severe, (2) private health insurance compared to Medicaid/Medicare, and (3) other or no health insurance compared to Medicaid/Medicare

Self-Care Recommendations of Middle-Aged and Older Adults with Sickle Cell Disease

Self-care management is an important part of living with a chronic illness. Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. Some middle-aged and older adults with SCD lived with the disease prior to having a diagnosis and without modern advances. The purpose of this study is to share the self-care recommendations of middle-aged and older adults with SCD. Using descriptive qualitative methods, data were gathered through semistructured interviews from 11 individuals living with SCD, including 6 women and 5 men. Self-care recommendations themes included physiological, psychological, and provider-related. The self-care recommendations may be seen as an additional resource or “words of wisdom” for younger adults with SCD who can use the recommendations to better manage their own disease. Additionally, providers may be able to use these recommendations to inform their practice

Does Attendance at a Sickle Cell Educational Conference Improve Clinician Knowledge and Attitude Toward Patients with Sickle Cell Disease?

Sickle cell disease (SCD) is a genetic disease associated with both chronic pain and acute painful events referred to as vaso-occlusive crisis. Individuals suffer from a multitude of medical complications in addition to pain. Patients are often stigmatized as “drug-seeking” and receive inadequate pain management

Health-Related Stigma in Young Adults With Sickle Cell Disease

Health-related stigma is increasingly becoming a major public health issue that is receiving more attention. Young adults with sickle cell disease (SCD) are at risk for health-related stigmatization due to the many challenges of the disease. SCD includes the lifelong challenges of managing the chronic illness while accessing and navigating the health care system. The burdens of the disease can affect all aspects of the lives of individuals with SCD to include physiological, psychological, and social well-being. Although others may be involved in the process of stigmatization, the purpose of this paper was to support the need to develop patient-oriented interventions to prevent and treat health-related stigma in young adults with SCD, as these individuals may face health-related stigma throughout their lives, but especially immediately after transitioning from pediatric to adult care. Additionally, the Revised Theory of Self-Care Management for Sickle Cell Disease is offered as a framework from which theory-based interventions can be derived

Care Seeking for Pain in Young Adults with Sickle Cell Disease

In individuals with sickle cell disease (SCD), recognizing the cues to an acute pain episode and responding appropriately are important. The purpose of this mixed-methods pilot study is to identify preliminary factors that influence care seeking for pain in young adults with SCD. Responses were received from 69 young adults with SCD, age 18-35 years. The majority of respondents (88%) wait until the pain intensity is an average of 8.7 (± 1.2) on a scale of 1 to 10 before seeking care. Prominent themes influencing care seeking for pain include: trying to treat pain at home, avoiding the emergency department because of past treatment experiences, the desire to avoid admission to the hospital, and the importance of time in the lives of the young adults with SCD. Young adults with SCD need additional support from family and healthcare providers in order to make timely, appropriate decisions regarding care seeking

Over 35 years, integrated pest management has reduced pest risks and pesticide use

Pests and their interactions with crops, ecological landscapes and animals are in continuous flux — they are never static. Pest severity increases or decreases depending on environmental conditions and changes in production or pest control practices. Pest management is made even more challenging by exotic and newly invasive pests. Over its 35-year history, the UC Agriculture and Natural Resources Statewide IPM Program has supported research and extension that has decreased risks of crop losses, improved treatment programs for invasive and endemic pests, and reduced the use of pesticides and their impact on the environment and human health. Its publications are widely used among growers, pest control advisers, research institutions, state agencies, agricultural organizations and gardeners; and integrated pest management has been adopted statewide in agriculture, as well as in managed landscapes and urban areas.

Implementing Electronic Tablet-Based Education of Acute Care Patients

Poor education-related discharge preparedness for patients with heart failure is believed to be a major cause of avoidable rehospitalizations. Technology-based applications offer innovative educational approaches that may improve educational readiness for patients in both inpatient and outpatient settings; however, a number of challenges exist when implementing electronic devices in the clinical setting. Implementation challenges include processes for "on-boarding" staff, mediating risks of cross-contamination with patients' device use, and selling the value to staff and health system leaders to secure the investment in software, hardware, and system support infrastructure. Strategies to address these challenges are poorly described in the literature. The purpose of this article is to present a staff development program designed to overcome challenges in implementing an electronic, tablet-based education program for patients with heart failure

Neural stem cell isolation from the whole mouse brain using the novel FABP7-binding fluorescent dye, CDr3

10.1016/j.scr.2013.09.002Stem Cell Research1131314-132

Establishment of a Bluetongue Virus Infection Model in Mice that Are Deficient in the Alpha/Beta Interferon Receptor

Bluetongue (BT) is a noncontagious, insect-transmitted disease of ruminants caused by the bluetongue virus (BTV). A laboratory animal model would greatly facilitate the studies of pathogenesis, immune response and vaccination against BTV. Herein, we show that adult mice deficient in type I IFN receptor (IFNAR(−/−)) are highly susceptible to BTV-4 and BTV-8 infection when the virus is administered intravenously. Disease was characterized by ocular discharges and apathy, starting at 48 hours post-infection and quickly leading to animal death within 60 hours of inoculation. Infectious virus was recovered from the spleen, lung, thymus, and lymph nodes indicating a systemic infection. In addition, a lymphoid depletion in spleen, and severe pneumonia were observed in the infected mice. Furthermore, IFNAR(−/−) adult mice immunized with a BTV-4 inactivated vaccine showed the induction of neutralizing antibodies against BTV-4 and complete protection against challenge with a lethal dose of this virus. The data indicate that this mouse model may facilitate the study of BTV pathogenesis, and the development of new effective vaccines for BTV