DISEASE-RELATED INFORMATION NEEDS OF CANCER PATIENTS AGES 11-20: A COMPARISON OF PATIENT-PARENT AND PATIENT-PHYSICIAN PERCEPTIONS

Innovative, aggressive treatments and prolonged survival rates for patients with childhood cancers have placed new demands on the patient, parent and physician. As a result, counterproductive coping behaviors are often noted in adolescent cancer patients.^ One of the main ways the environment is manipulated by the individual to achieve personal comfort is through selectivity of information. An individual will usually pull the support personally needed to cope from the environment if sufficient resources are available. However, information provided young cancer patients is often filtered through the physicians and parents perspectives of the patient's needs without systematic input from the patient. In order to ensure that adequate information resources are available to help teenage patients cope with their illness, health professionals must have insights into the information needs of those patients. No previous efforts to address this subject were found in the literature.^ This study was designed to identify adolescent perspectives of their disease-related information needs and to compare their viewpoints with those of their parents and physicians. Sixty-five outpatient cancer patients (ages 11-20) receiving treatment at the University of Texas M. D. Anderson Hospital and Tumor Institute in Houston, Texas, 60 of their parents, and 53 physicians, who were involved in the treatment of pediatric patients at M. D. Anderson, were asked to complete self-administered questionnaires. The questionnaires used were developed, administered and analyzed by the investigator. Specific areas addressed in the questionnaires included: Perceptions of cancer-related tests and treatments, the importance of 30 disease-related items of information, responses evoked by receipt of information, current and preferred sources of information, delivery of information at the time of diagnosis, and disease-related information requested for patients, family, friends and teachers.^ Adolescent perceptions of their information needs and their preferences for delivery of information were determined. The relationships between patient-parent and patient-physician perceptions were then analyzed to determine areas in which agreements and disparities in viewpoint existed. Programmatic and research recommendations were then provided.^ Hopefully, through these efforts, the adolescent patient will be helped to receive relevant information support from those deemed to be most important to his/her efforts to cope with cancer. ^

Evaluation of web-based resources for HIV+ youth

Given current rates of the Human Immunodeficiency Virus (HIV) in youth ages 15���24, comprehensive care is imperative in order to manage the virus and to prevent further transmission. In the past decade, the Internet has become an immensely popular source for information, including health information. Due to the increase in Internet use for this purpose, the assessment of the quality, accuracy, and timeliness of health information on the Internet is necessary since the information delivered may not be current or accurate. The purpose of this study was to determine the quantity and quality of websites containing health information and resources directed specifically towards HIV positive youth. Three general search terms, ���HIV + teens���, ���HIV teens info���, and ���HIV infected teens,��� were searched using the current top three search engines: Google, Yahoo!, and MSN/Bing. The first hundred hits of each search were then categorized by type of website. The examination of the search results yielded 7 sites that met the inclusion criteria. These sites were consequently evaluated on functionality and content using an adapted version of a pre-existing instrument. The functionality analysis revealed that no websites that contained self management information were dedicated specifically to HIV positive youth. The content analysis showed that the sites chosen for evaluation were mostly consistent with the guidelines provided by the Department of Health and Human Services. The most discussed topics in the sites included the importance of safer sexual behavior, HIV counseling, partner notification, safer behavior choices, such as condom use, and mental health. These results highlight the need for the development of accessible websites that contain accurate information targeting youth infected with HIV. This study provides a snapshot of the available web-based resources and health information for HIV positive youth, and is relevant for health educators, care providers, researchers, and others intervening with HIV+ youth. ^

Effect of primary care availability and health insurance coverage on risk and cost of Preventable Hospitalizations in Harris County

Preventable Hospitalizations (PHs) are hospitalizations that can be avoided with appropriate and timely care in the ambulatory setting and hence are closely associated with primary care access in a community. Increased primary care availability and health insurance coverage may increase primary care access, and consequently may be significantly associated with risks and costs of PHs. Objective. To estimate the risk and cost of preventable hospitalizations (PHs); to determine the association of primary care availability and health insurance coverage with the risk and costs of PHs, first alone and then simultaneously; and finally, to estimate the impact of expansions in primary care availability and health insurance coverage on the burden of PHs among non-elderly adult residents of Harris County. Methods. The study population was residents of Harris County, age 18 to 64, who had at least one hospital discharge in a Texas hospital in 2008. The primary independent variables were availability of primary care physicians, availability of primary care safety net clinics and health insurance coverage. The primary dependent variables were PHs and associated hospitalization costs. The Texas Health Care Information Collection (THCIC) Inpatient Discharge data was used to obtain information on the number and costs of PHs in the study population. Risk of PHs in the study population, as well as average and total costs of PHs were calculated. Multivariable logistic regression models and two-step Heckman regression models with log-transformed costs were used to determine the association of primary care availability and health insurance coverage with the risk and costs of PHs respectively, while controlling for individual predisposing, enabling and need characteristics. Predicted PH risk and cost were used to calculate the predicted burden of PHs in the study population and the impact of expansions in primary care availability and health insurance coverage on the predicted burden. Results. In 2008, hospitalized non-elderly adults in Harris County had 11,313 PHs and a corresponding PH risk of 8.02%. Congestive heart failure was the most common PH. PHs imposed a total economic burden of $84 billion at an average of $7,449 per PH. Higher primary care safety net availability was significantly associated with the lower risk of PHs in the final risk model, but only in the uninsured. A unit increase in safety net availability led to a 23% decline in PH odds in the uninsured, compared to only a 4% decline in the insured. Higher primary care physician availability was associated with increased PH costs in the final cost model (��=0.0020; p<0.05). Lack of health insurance coverage increased the risk of PH, with the uninsured having 30% higher odds of PHs (OR=1.299; p<0.05), but reduced the cost of a PH by 7% (��=-0.0668; p<0.05). Expansions in primary care availability and health insurance coverage were associated with a reduction of about $1.6 million in PH burden at the highest level of expansion. Conclusions. Availability of primary care resources and health insurance coverage in hospitalized non-elderly adults in Harris County are significantly associated with the risk and costs of PHs. Expansions in these primary care access factors can be expected to produce significant reductions in the burden of PHs in Harris County.^

Public library consumer health information pilot project: results of a National Library of Medicine evaluation

In October 1998, the National Library of Medicine (NLM) launched a pilot project to learn about the role of public libraries in providing health information to the public and to generate information that would assist NLM and the National Network of Libraries of Medicine (NN/LM) in learning how best to work with public libraries in the future. Three regional medical libraries (RMLs), eight resource libraries, and forty-one public libraries or library systems from nine states and the District of Columbia were selected for participation. The pilot project included an evaluation component that was carried out in parallel with project implementation. The evaluation ran through September 1999. The results of the evaluation indicated that participating public librarians were enthusiastic about the training and information materials provided as part of the project and that many public libraries used the materials and conducted their own outreach to local communities and groups. Most libraries applied the modest funds to purchase additional Internet-accessible computers and/or upgrade their health-reference materials. However, few of the participating public libraries had health information centers (although health information was perceived as a top-ten or top-five topic of interest to patrons). Also, the project generated only minimal usage of NLM's consumer health database, known as MEDLINEplus, from the premises of the monitored libraries (patron usage from home or office locations was not tracked). The evaluation results suggested a balanced follow-up by NLM and the NN/LM, with a few carefully selected national activities, complemented by a package of targeted activities that, as of January 2000, are being planned, developed, or implemented. The results also highlighted the importance of building an evaluation component into projects like this one from the outset, to assure that objectives were met and that evaluative information was available on a timely basis, as was the case here.

Information Discovery on Electronic Health Records Using Authority Flow Techniques

Background As the use of electronic health records (EHRs) becomes more widespread, so does the need to search and provide effective information discovery within them. Querying by keyword has emerged as one of the most effective paradigms for searching. Most work in this area is based on traditional Information Retrieval (IR) techniques, where each document is compared individually against the query. We compare the effectiveness of two fundamentally different techniques for keyword search of EHRs. Methods We built two ranking systems. The traditional BM25 system exploits the EHRs' content without regard to association among entities within. The Clinical ObjectRank (CO) system exploits the entities' associations in EHRs using an authority-flow algorithm to discover the most relevant entities. BM25 and CO were deployed on an EHR dataset of the cardiovascular division of Miami Children's Hospital. Using sequences of keywords as queries, sensitivity and specificity were measured by two physicians for a set of 11 queries related to congenital cardiac disease. Results Our pilot evaluation showed that CO outperforms BM25 in terms of sensitivity (65% vs. 38%) by 71% on average, while maintaining the specificity (64% vs. 61%). The evaluation was done by two physicians. Conclusions Authority-flow techniques can greatly improve the detection of relevant information in EHRs and hence deserve further study.

Young students' use of the internet for mental health information and support

It is recognized that young people experience difficulties in accessing mainstream mental health services particularly because of the stigma that remains associated with mental health problems. One potential solution is to use the many websites available offering information and support for mental health problems, such support and information could be offered by Psychiatric Nurses. However, young peoples' usage and views on using the Internet for this purpose has yet to be examined. This quantitative descriptive study aimed to elicit the views of 922 University students, aged between 18 and 24 years, on using the Internet for mental health information and support. Data were collected using a 30-item self-designed questionnaire and analysed using descriptive statistics. The findings indicated that 72.4% of participants used the Internet several times a day. In addition, 30.8% had previously searched for mental health information online, predominantly on depression. While it was found that 68% of participants indicated that they would use the Internet for mental health support if they needed to, 79.4% would still prefer face to face support. It is concluded that young people are willing to use the Internet for mental health information and that it represents a viable source of support for this age group.

Putting Adequate Financial and Human Resources in Healthcare for Effective Universal Health Coverage in Kenya: Lessons and Experiences from China

<p>In recent years, most low and middle-income countries, have adopted different approaches to universal health coverage (UHC), to ensure equity and financial risk protection in accessing essential healthcare services. UHC-related policies and delivery strategies are largely based on existing healthcare systems, a result of gradual development (based on local factors and priorities). Most countries have emphasized on health financing, and human resources for health (HRH) reform policies, based on good practices of several healthcare plans to deliver UHC for their population.</p><p>Health financing and labor market frameworks were used, to understand health financing, HRH dynamics, and to analyze key health policies implemented over the past decade in Kenya���s effort to achieve UHC. Through the understanding, policy options are proposed to Kenya; analyzing, and generating lessons from health financing, and HRH reforms experiences in China. Data was collected using mixed methods approach, utilizing both quantitative (documents and literature review), and qualitative (in-depth interviews) data collection techniques. </p><p>The problems in Kenya are substantial: high levels of out-of-pocket health expenditure, slow progress in expanding health insurance among informal sector workers, inefficiencies in pulling of health are revenues, inadequate deployed HRH, maldistribution of HRH, and inadequate quality measures in training health worker. The government has identified the critical role of strengthening primary health care and the National Hospital Insurance Fund (NHIF) in Kenya���s move towards UHC. Strengthening primary health care requires; re-defining the role of hospitals, and health insurance schemes, and training, deploying and retaining primary care professionals according to the health needs of the population; concepts not emphasized in Kenya���s healthcare reforms or programs design. Kenya���s top leadership commitment is urgently needed for tougher reforms implementation, and important lessons from China���s extensive health reforms in the past decade are beneficial. Key lessons from China include health insurance expansion through rigorous research, monitoring, and evaluation, substantially increasing government health expenditure, innovative primary healthcare strengthening, designing, and implementing health policy reforms that are responsive to the population, and regional approaches to strengthening HRH.</p>

Examining health literacy disparities in the United States: a third look at the National Assessment of Adult Literacy (NAAL)

BACKGROUND: In the United States, disparities in health literacy parallel disparities in health outcomes. Our research contributes to how diverse indicators of social inequalities (i.e., objective social class, relational social class, and social resources) contribute to understanding disparities in health literacy. <br /><br />METHODS: We analyze data on respondents 18&nbsp;years of age and older (N&thinsp;=&thinsp;14,592) from the 2003 National Assessment of Adult Literacy (NAAL) restricted access data set. A series of weighted Ordinary Least Squares (OLS) regression models estimate the association between respondent's demographic characteristics, socioeconomic status (SES), relational social class, social resources and an Item Response Theory (IRT) based health literacy measure. <br /><br />RESULTS: Our findings are consistent with previous research on the social and SES determinants of health literacy. However, our findings reveal the importance of relational social status for understanding health literacy disparities in the United States. Objective indicators of social status are persistent and robust indicators of health literacy. Measures of relational social status such as civic engagement (i.e., voting, volunteering, and library use) are associated with higher health literacy levels net of objective resources. Social resources including speaking English and marital status are associated with higher health literacy levels. <br /><br />CONCLUSIONS: Relational indicators of social class are related to health literacy independent of objective social class indicators. Civic literacy (e.g., voting and volunteering) are predictors of health literacy and offer opportunities for health intervention. Our findings support the notion that health literacy is a social construct and suggest the need to develop a theoretically driven conceptual definition of health literacy that includes a civic literacy component.

"When I saw walking I just kind of took it as wheeling": interpretations of mobility-related items in generic, preference-based health state instruments in the context of spinal cord injury

Background : In health economic analyses, health states are typically valued using instruments with few items per dimension. Due to the generic (and often reductionist) nature of such instruments, certain groups of respondents may experience challenges in describing their health state. This study is concerned with generic, preference-based health state instruments that provide information for decisions about the allocation of resources in health care. Unlike physical measurement instruments, preference-based health state instruments provide health state values that are dependent on how respondents interpret the items. This study investigates how individuals with spinal cord injury (SCI) interpret mobility-related items contained within six preference-based health state instruments.<br /><br />Methods : Secondary analysis of focus group transcripts originally collected in Vancouver, Canada, explored individuals&rsquo; perceptions and interpretations of mobility-related items contained within the 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the 36-item Short Form health survey version 2 (SF-36v2). Ritchie and Spencer&rsquo;s &lsquo;Framework Approach&rsquo; was used to perform thematic analysis that focused on participants&rsquo; comments concerning the mobility-related items only.<br /><br />Results : Fifteen individuals participated in three focus groups (five per focus group). Four themes emerged: wording of mobility (e.g., &lsquo;getting around&rsquo; vs &lsquo;walking&rsquo;), reference to aids and appliances, lack of suitable response options, and reframing of items (e.g., replacing &lsquo;walking&rsquo; with &lsquo;wheeling&rsquo;). These themes reflected item features that respondents perceived as relevant in enabling them to describe their mobility, and response strategies that respondents could use when faced with inaccessible items.<br /><br />Conclusion : Investigating perceptions to mobility-related items within the context of SCI highlights substantial variation in item interpretation across six preference-based health state instruments. Studying respondents&rsquo; interpretations of items can help to understand discrepancies in the health state descriptions and values obtained from different instruments. This line of research warrants closer attention in the health economics and quality of life literature.

Information enrichment for quality recommender systems

The explosive growth of the World-Wide-Web and the emergence of ecommerce are the major two factors that have led to the development of recommender systems (Resnick and Varian, 1997). The main task of recommender systems is to learn from users and recommend items (e.g. information, products or books) that match the users��� personal preferences. Recommender systems have been an active research area for more than a decade. Many different techniques and systems with distinct strengths have been developed to generate better quality recommendations. One of the main factors that affect recommenders��� recommendation quality is the amount of information resources that are available to the recommenders. The main feature of the recommender systems is their ability to make personalised recommendations for different individuals. However, for many ecommerce sites, it is difficult for them to obtain sufficient knowledge about their users. Hence, the recommendations they provided to their users are often poor and not personalised. This information insufficiency problem is commonly referred to as the cold-start problem. Most existing research on recommender systems focus on developing techniques to better utilise the available information resources to achieve better recommendation quality. However, while the amount of available data and information remains insufficient, these techniques can only provide limited improvements to the overall recommendation quality. In this thesis, a novel and intuitive approach towards improving recommendation quality and alleviating the cold-start problem is attempted. This approach is enriching the information resources. It can be easily observed that when there is sufficient information and knowledge base to support recommendation making, even the simplest recommender systems can outperform the sophisticated ones with limited information resources. Two possible strategies are suggested in this thesis to achieve the proposed information enrichment for recommenders: ��� The first strategy suggests that information resources can be enriched by considering other information or data facets. Specifically, a taxonomy-based recommender, Hybrid Taxonomy Recommender (HTR), is presented in this thesis. HTR exploits the relationship between users��� taxonomic preferences and item preferences from the combination of the widely available product taxonomic information and the existing user rating data, and it then utilises this taxonomic preference to item preference relation to generate high quality recommendations. ��� The second strategy suggests that information resources can be enriched simply by obtaining information resources from other parties. In this thesis, a distributed recommender framework, Ecommerce-oriented Distributed Recommender System (EDRS), is proposed. The proposed EDRS allows multiple recommenders from different parties (i.e. organisations or ecommerce sites) to share recommendations and information resources with each other in order to improve their recommendation quality. Based on the results obtained from the experiments conducted in this thesis, the proposed systems and techniques have achieved great improvement in both making quality recommendations and alleviating the cold-start problem.

Conceptions of school based youth health nursing : a phenomenographic study

The School Based Youth Health Nurse Program was established in 1999 by the Queensland Government to fund school nurse positions in Queensland state high schools. Schools were required to apply for a School Based Youth Health Nurse during a five-phase recruitment process, managed by the health districts, and rolled out over four years. The only mandatory selection criterion for the position of School Based Youth Health Nurse was registration as a General Nurse and most School Based Youth Health Nurses are allocated to two state high schools. Currently, there are approximately 115 Full Time Equivalent School Based Youth Health Nurse positions across all Queensland state high schools. The literature review revealed an abundance of information about school nursing. Most of the literature came from the United Kingdom and the United States, who have a different model of school nursing to school based youth health nursing. However, there is literature to suggest school nursing is gradually moving from a disease-focused approach to a social view of health. The noticeable number of articles about, for example, drug and alcohol, mental health, and contemporary sexual health issues, is evidence of this change. Additionally, there is a significant the volume of literature about partnerships and collaboration, much of which is about health education, team teaching and how school nurses and schools do health business together. The surfacing of this literature is a good indication that school nursing is aligning with the broader national health priority areas. More particularly, the literature exposed a small but relevant and current body of research, predominantly from Queensland, about school based youth health nursing. However, there remain significant gaps in the knowledge about school based youth health nursing. In particular, there is a deficit about how School Based Youth Heath Nurses understand the experience of school based youth health nursing. This research aimed to reveal the meaning of the experience of school based youth health nursing. The research question was How do School Based Youth Health Nurses��� understand the experience of school based youth health nursing? This enquiry was instigated because the researcher, who had a positive experience of school based youth health nursing, considered it important to validate other School Based Youth Health Nurses��� experiences. Consequently, a comprehensive use of qualitative research was considered the most appropriate manner to explore this research question. Within this qualitative paradigm, the research framework consists of the epistemology of social constructionism, the theoretical perspective of interpretivism and the approach of phenomenography. After ethical approval was gained, purposeful and snowball sampling was used to recruit a sample of 16 participants. In-depth interviews, which were voluntary, confidential and anonymous, were mostly conducted in public venues and lasted from 40-75 minutes. The researcher also kept a researchers journal as another form of data collection. Data analysis was guided by Dahlgren and Fallsbergs��� (1991, p. 152) seven phases of data analysis which includes familiarization, condensation, comparison, grouping, articulating, labelling and contrasting. The most important finding in this research is the outcome space, which represents the entirety of the experience of school based youth health nursing. The outcome space consists of two components: inside the school environment and outside the school environment. Metaphorically and considered as whole-in-themselves, these two components are not discreet but intertwined with each other. The outcome space consists of eight categories. Each category of description is comprised of several sub-categories of description but as a whole, is a conception of school based youth health nursing. The eight conceptions of school based youth health nursing are: 1. The conception of school based youth health nursing as out there all by yourself. 2. The conception of school based youth health nursing as no real backup. 3. The conception of school based youth health nursing as confronted by many barriers. 4. The conception of school based youth health nursing as hectic and full-on. 5. The conception of school based youth health nursing as working together. 6. The conception of school based youth health nursing as belonging to school. 7. The conception of school based youth health nursing as treated the same as others. 8. The conception of school based youth health nursing as the reason it���s all worthwhile. These eight conceptions of school based youth health nursing are logically related and form a staged hierarchical relationship because they are not equally dependent on each other. The conceptions of school based youth health nursing are grouped according to negative, negative and positive and positive conceptions of school based youth health nursing. The conceptions of school based youth health nursing build on each other, from the bottom upwards, to reach the authorized, or the most desired, conception of school based youth health nursing. This research adds to the knowledge about school nursing in general but especially about school based youth health nursing specifically. Furthermore, this research has operational and strategic implications, highlighted in the negative conceptions of school based youth health nursing, for the School Based Youth Health Nurse Program. The researcher suggests the School Based Youth Health Nurse Program, as a priority, address the operational issues The researcher recommends a range of actions to tackle issues and problems associated with accommodation and information, consultations and referral pathways, confidentiality, health promotion and education, professional development, line management and School Based Youth Health Nurse Program support and school management and community. Strategically, the researcher proposes a variety of actions to address strategic issues, such as the School Based Youth Health Nurse Program vision, model and policy and practice framework, recruitment and retention rates and evaluation. Additionally, the researcher believes the findings of this research have the capacity to spawn a myriad of future research projects. The researcher has identified the most important areas for future research as confidentiality, information, qualifications and health outcomes.

Understanding users��� information behaviors through information journals

Information behavior studies in the field of Library and Information Science (LIS) generally focus on one of many aspects of information behavior: information finding, information organizing, and information using. Information seeking is further specialized into information searching, information seeking, information foraging or information sense making. Spink and Cole (2006) highlighted the lack of integration across these various approaches and models of information behavior within LIS. Often, each approach provides a different language for similar processes (Spink & Cole, 2004), and it is sometimes hard for practicing information professionals to parse the various theories and models to see how they shape and affect the provision of information resources, services, and products. An integrated model of information behaviors that explains the key dimensions of how peoples��� contextual and situational dimensions affect their information needs and behavior will help information providers and LIS researchers alike with a framework that can help ���depict and explain a sequence of behaviors by referring to relevant variables, rather than merely indicating a sequence of events��� while indicating something about information needs and sources��� (Case, 2002). This presentation presents an integrated model of peoples��� information behaviors based on research that studied participants��� information behaviors through a detailed daily information journal maintained for two weeks.