bluuebunny/crossref_metadata_2025 huggingface dataset:
Striving to Survive: Families’ Lived Experiences When a Child Is Diagnosed With Cancer
Authors: Björk Maria , Wiebe Thomas , Hallström Inger
Published: August 2005

When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family’s lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families’ lived experience was described as a 2-fold essential theme comprising “a broken life world” and an immediate “striving to survive.” The families’ secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family.
Spiritually-Informed Management Theory
Authors: Delbecq André L.
Published: August 2005

Steingard’s essay is refulgent with theoretical insight. It is, however, easy to slip by important nuances unless one is steeped in the literature and language he references. So perhaps briefly sharing a more descriptive perspective from a dialog with more than 350 managerial participants in the seminar, Spirituality of Organizational Leadership offered at Santa Clara University can be complementary (Delbecq, 2000). This article clearly shares a subjective overall perspective. In any group of managers there will be a range of responses.
Interviewing Clinicians and Advocates Who Work With Sexual Assault Survivors
Authors: Ullman Sarah E.
Published: July 2005

This article describes the author's personal experiences of conducting a qualitative semistructured interview study, after having done predominantly quantitative survey research in the social sciences. The author describes the process of learning how to approach conducting semistructured interviews with female advocates and clinicians who provide services to sexual assault survivors in the community. The author describes making the transition from a logical positivist deductive approach to thinking about and conducting research to a more social constructionist stance in which one learns from participants about their experiences and perspectives in narrative form to discover knowledge and develop theory inductively.
Prosecutorial Perspectives on Gender-Bias Hate Crimes
Authors: McPhail Beverly A. , DiNitto Diana M.
Published: July 2005

Increasingly, state and federal hate crime policies include the status category of gender. This study assesses prosecutors' knowledge of gender-bias hate crimes and their willingness to charge violence against women as a hate crime. A grounded theory method used qualitative interviews with a purposive sample of prosecutors from Texas. The study found prosecutors insufficiently informed about gender-bias hate crimes. Prosecutors attribute violence against women to motivations of power and control rather than hate. Prosecutors find hate crime prosecutions problematic, including the use of the category of gender. The findings have implications for the hate crime and antiviolence against women movements.
Maternal State of Mind and Expressed Emotion: Impact of Mothers’ Mental Health, Stress, and Family Satisfaction
Authors: Jonn-Seed Mary St. , Weiss Sandra J.
Published: July 2005

BACKGROUND Little is known about the relationship of mothers’ psychological distress to the emotions they express toward their children. OBJECTIVE The purpose of this study was to determine the degree to which mothers’ mental health status, perceived stress, and satisfaction with family relationships contribute to their expressed emotion with high-risk children. STUDY DESIGN A cross-sectional, correlational design was employed involving analysis of expressed emotion in videotaped mother-child interactions, self-report measures of stress and family satisfaction, and assessments of mothers’ mental health status. RESULTS A mother’s family satisfaction was significantly related to less criticism and more positive comments about the child. Perceived stress was associated with mother’s emotional overinvolvement and less hostility. Mother’s mental health was not a significant predictor of her expressed emotion. CONCLUSIONS Interventions to enhance a mother’s family interactions and her ability to cope with stress may improve the quality of a mother’s affective communication with her high-risk child.
Internal Evaluation: A Synthesis of Traditional Methods and Industrial Engineering
Authors: Morell Jonathan A.
Published: August 2005

In evaluation as it has been practiced, requirements for specialized training have caused a trade-off between rigor of method and the extent of program staff’s involvement in the evaluation process. There is a way to remove the trade-off between “rigor” and “use,” by applying industrial engineering (IE) tools that, though sophisticated and powerful, are packaged to facilitate use by people with relatively little specialized training. One level of IE use in evaluation simply adds tools to the evaluators’ toolbox. The second level employs the methodological abilities of evaluators to adapt and improve IE tools. Several problems must be solved in order to achieve the necessary integration. These include inserting the new evaluation technology into program settings, training and education, and developing a different kind of relationship between professional evaluators and those who work in settings where evaluation takes place.
Using Portfolios in Program Evaluation: An Investigation of Interrater Reliability
Authors: Johnson Robert L. , McDaniel Fred , Willeke Marjorie J.
Published: August 2005

Portfolios and other open-ended assessments are increasingly incorporated into evaluations and testing programs. However, questions about the reliability of such assessments continue to be raised. After reviewing forces that may be leading to increased interest in and use of portfolio assessment, we investigate the interrater reliability of a portfolio assessment used in a small-scale program evaluation. Three types of portfolio scores were investigated—analytic, combined analytic (formed by summing across analytic scores), and holistic. The interrater reliability coefficient was highest for summed analytic scores ( r 5 .86). Results indicate that at least three raters are required to obtain acceptable levels of reliability for holistic and individual analytic scores.
Getting More “Bang” for Your Performance Measures “Buck”
Authors: Scheirer Mary Ann
Published: August 2005

Funders of intervention programs and services at the federal, state, and local levels are requiring greater accountability via the use of performance measures. Data from these measures are usually reported descriptively for the entire program. It is suggested here that performance measure data that are already being collected could become much more useful, at low additional cost, by further analyzing the relationships among the measures, especially across time. By using logic models to show expected relationships among several types of measures, and then analyzing variability among program delivery units for those measures, evaluators could provide evidence for the hypothesized connections among program delivery, outputs, and desired outcomes. Such analyses also would help to link two major purposes for performance measurement—program improvement and accountability to the public—which are often viewed as contrasting or even incompatible uses.
Using Performance Measurement Systems for Assessing the Merit and Worth of Reforms
Authors: Harkreader Steve A. , Henry Gary T.
Published: August 2005

One highly touted use of performance measurement systems is to assess the merit and worth of reforms. In this study, the effect of the League of Professional Schools, a democratic reform initiative in Georgia, was evaluated using performance measures from the state’s educational performance measurement system. The findings indicate that the League, in combination with an antecedent condition, motivated leadership, produced more widespread participation in staff development than other schools. In addition, schools that were relatively successful in implementing the tenets of the program exhibited modestly improved levels of student achievement over similar schools. However, the League schools did not outperform schools involved in another school reform that was instituted with the same antecedent condition—motivated leadership. Although both reforms were associated with modestly better student performance, the League seemed to trigger more teacher involvement in school governance than did the alternative reform. There is, however, no evidence that the antecedent condition, motivated leadership, was not sufficient by itself to cause the higher levels of student performance. Analysis of the performance measurement data allowed the merit of the League to be assessed against several different performance standards. Although the performance of the League’s schools was positive relative to several of these performance standards, in the end it was impossible to use performance measures to show that the League was a necessary component of the causal package that resulted in improved performance.
Planning for Community-based Evaluation
Authors: Cockerill Rhonda , Myers Ted , Allman Dan
Published: August 2005

We present a planning guide that can be used to improve community-based evaluation. The planning guide consists of a set of questions that need to be discussed with all stakeholders. It covers issues relating to the nature and purpose of a community-based evaluation project, research methods and approaches, participation and decision-making, conflict and conflict resolution, and dissemination and use of results. The planning guide was developed through our experiences in an HIV/AIDS research and evaluation unit and a review of the literature. If community-based evaluators keep in mind the questions in this planning guide and discuss them early on with stakeholders, the evaluation process should benefit.
Designed Blindness: An Action Science Perspective on Program Theory Evaluation
Authors: Friedman Victor J.
Published: August 2005

This article is intended to stimulate a dialogue between program theory evaluation and action science for the purposes of cross-fertilization and mutual enrichment. Both program theory evaluation and action science use the concept of implicit “theories of action” as a central construct in the study of social practice. However, an action science approach suggests a wider understanding of program theory that (1) specifies the links between individual reasoning and behavior to program implementation, and (2) accounts for how programs deal with dilemmas, conflict, and error. This paper begins with a systematic, though not exhaustive, comparison of program theory evaluation and action science. It analyzes an exemplar of program theory evaluation from an action science perspective to illustrate a subtheory, “designed blindness,” and its impact on both program implementation and the evaluation itself. It then offers a theory for overcoming designed blindness. Finally, this article argues that action science concepts and skills can enable program theory evaluators to be more effective in confronting defensiveness and in facilitating learning among stakeholders when there is a gap between “espoused” program theory and “theory-in-use.”
Toward a Taxonomy of Essential Evaluator Competencies
Authors: King Jean A. , Stevahn Laurie , Ghere Gail , Minnema Jane
Published: August 2005

This article discusses an exploratory study designed to determine the extent to which evaluation professionals, representing diverse backgrounds and approaches, could reach agreement on a proposed taxonomy of essential evaluator competencies. Participants were 31 diverse individuals in the field of program evaluation in the greater Minneapolis-St. Paul, Minnesota area who systematically engaged in a Multi-Attribute Consensus Reaching process. Both quantitative and qualitative results predominantly indicated consensus on more than three-fourths of the proposed competencies. Areas of disagreement reflected the role- and context-specific nature of evaluation practice.
The Potential of Social Capital Measures in the Evaluation of Comprehensive Community-Based Health Initiatives
Authors: Petersen Dana M.
Published: August 2005

Determining the effectiveness of comprehensive community initiatives (CCIs) poses measurement challenges for evaluators and communities, especially those attempting to employ participatory evaluation. In light of the growing body of research documenting, a relationship between social capital and health, this paper suggests, first, that evaluators should consider social capital as one of the major influences in health and well-being and, second, that measures of social capital should receive increased attention as indicators of progress toward health outcome goals. In this note, I clarify what is meant by the concept “social capital,” offer a possible operationalization of the term, present findings from a small sample of studies that demonstrate links between measures of social capital and health, and offer justification of this alternative measurement approach for the evaluation of CCIs. Discussion is based on SRI International’s work with communities involved in the Sierra Health Foundation’s community partnerships for healthy children initiative.
Teaching Program Evaluation: Using a Systems Approach
Authors: Darabi Abbas
Published: August 2005

Increasing numbers of individuals are being asked to teach courses in program evaluation. Students in program evaluation courses are trying to piece together activities presented to them in order to create their own “big picture” of the seemingly fragmented and chaotic process of evaluation. The abundance of program evaluation approaches and content-specific models exacerbates the problem by only organizing and conveying conceptual and factual knowledge while seeming to render key aspects of program evaluation practice invisible to students. This article describes a program evaluation model that was developed over three semesters of teaching an introductory graduate-level course in program evaluation. The framework utilizes a systems approach that emphasizes its sequenced methodology and the significance of monitoring one’s work by providing a series of feedback loops in an ongoing revision process.
Strategies for Managing Evaluation Anxiety: Toward a Psychology of Program Evaluation
Authors: Donaldson Stewart I. , Gooler Laura E. , Scriven Michael
Published: August 2005

Excessive evaluation anxiety (XEA) can be a destructive phenomenon in modern program evaluation. Some of the negative consequences include: Lack of access to important information and data; compliance and cooperation problems; false reporting; effects on bias and validity; and reduced utilization of evaluation findings. If left alone, XEA can lead stakeholders to behave in ways that destroy the credibility of evaluation findings and evaluators. The purpose of this paper is to examine the sources and signs of XEA in program evaluation, and to provide practicing evaluators with strategies to prevent and manage this common problem. This example of how more than technical skills are required to conduct high quality program evaluations illustrates the need for and begins a broader discussion of the psychology of evaluation.
International Students’ Reflections on the Cultural Embeddedness of Evaluation Theory
Authors: Smith Nick L.
Published: August 2005

Locally adapted and culturally sensitive evaluation approaches are needed throughout the world. International students studying evaluation theory in the U.S. must both understand evaluation theory itself, and have a good grasp of the U.S. context in which it was developed and intended for use. They must then attempt to translate the theory into their own contexts, adjusting for differences in culture and socio-political realities, and assess its possible utility in their own evaluation work back home. This task is challenging; often, international students are inadequately prepared for it. In this article, both international and U.S. students reflect on the cultural, communication, and instructional difficulties of this process.
Fidelity Criteria: Development, Measurement, and Validation
Authors: Mowbray Carol T. , Holter Mark C. , Teague Gregory B. , Bybee Deborah
Published: August 2005

Fidelity may be defined as the extent to which delivery of an intervention adheres to the protocol or program model originally developed. Fidelity measurement has increasing significance for evaluation, treatment effectiveness research, and service administration. Yet few published studies using fidelity criteria provide details on the construction of a valid fidelity index. The purpose of this review article is to outline steps in the development, measurement, and validation of fidelity criteria, providing examples from health and education literatures. We further identify important issues in conducting each step. Finally, we raise questions about the dynamic nature of fidelity criteria, appropriate validation and statistical analysis methods, the inclusion of structure and process criteria in fidelity assessment, and the role of program theory in deciding on the balance between adaptation versus exact replication of model programs. Further attention to the use and refinement of fidelity criteria is important to evaluation practice.
Practical Training in Evaluation: A Review of the Literature
Authors: Trevisan Michael S.
Published: August 2005

This paper provides the results of a literature review on the use of practical, hands-on training experiences in evaluation course work and training programs. The review spans the years 1965-2003. I identified 18 articles that encompass four basic approaches for practical evaluation training: simulation, role-play, single course projects, and practicum experiences. The articles are summarized, documenting strengths, challenges, and unique features for each strategy. Findings from this review indicate substantial resources are often needed for effective practical training experiences. Authors of articles in this review illustrate a variety of options for incorporating methodology and or evaluation theory into the training experiences. The few articles that adhere to a pedagogical framework employ learning models that are consonant with the adult education literature and structure the practical experience accordingly. The literature reveals a lack of formal research on practical evaluation training. Faculty and students consistently speak to the benefits of these training experiences.
Do Family Caps on Welfare Affect Births Among Welfare Recipients? Reconciling Efficacy and Effectiveness Estimates of Impact through a Blended Design Strategy
Authors: Jagannathan Radha , Camasso Michael J. , Killingsworth Mark R.
Published: August 2005

This paper proposes a blended experimental and quasi-experimental research strategy which we believe will help improve the external validity of evaluations of welfare reform and other social policies. We draw upon data from New Jersey’s imposition of a family cap, where welfare benefits instead of increasing remained the same for women who conceive and bear a child while on public assistance. We directly compare estimates of the policy’s effectiveness on the state’s welfare population using (a) a point-in-time sample randomly assigned to experimental and control group conditions; (b) an initial cohort sample similarly assigned; and (c) a before and after policy implementation of the entire welfare caseload. We find that these estimates can differ dramatically, reflecting sensitivity to a time-induced heterogeneity we have labeled the Heraclitus effect. We discuss how multiple estimates of effectiveness can be used to bound expectations of a welfare reform policy impact when population dynamics data are available.
Effects of Advanced Course-taking on Math and Science Achievement: Addressing Selection Bias Using Propensity Scores
Authors: Leow Christine , Marcus Sue , Zanutto Elaine , Boruch Robert
Published: August 2005

Does taking advanced courses improve scores on basic achievement tests? This question is difficult to answer because there are many systematic differences between students who choose to take advanced courses and those who don’t. This paper uses cutting-edge propensity score methods to control for the selection bias that exists when studying the effects of advanced course-taking on a basic achievement test in math and science. In particular, the differential achievement between advanced course-taking and non-advanced course-taking students in a basic math and science proficiency test in high school is estimated, controlling for several background variables and using data from the Third International Mathematics and Science Study (TIMSS). Because propensity score methods adjust for selection bias on observed background variables, but not on unobserved background variables, we also consider the potential impact of selection bias due to unobserved measures (hidden bias) through a sensitivity analysis. Our analysis found that advanced course-taking is consistently associated with higher achievement. Sensitivity analysis suggests that this can be the result of hidden bias due to extreme differences in unobserved background variables, but cannot be explained if the differences in unobserved background variables are only moderate.
Evaluation Theory is Who We Are
Authors: Shadish William R.
Published: August 2005

All evaluators should know evaluation theory because it is central to our professional identity. It is what we talk about more than anything else, it seems to give rise to our most trenchant debates, it gives us the language we use for talking to ourselves and others, and perhaps most important, it is what makes us different from other professions. Especially in the latter regard, it is in our own self-interest to be explicit about this message, and to make evaluation theory the very heart of our identity. Every profession needs a unique knowledge base. For us, evaluation theory is that knowledge base.
The Value and Practicality of Deliberate Sampling for Heterogeneity: A Critical Multiplist Perspective
Authors: Blankertz Laura
Published: August 2005

This paper contains a description of the use of critical multiplism to evaluate the advantages and disadvantages of random sampling and deliberate sampling for heterogeneity, according to the ability of each type of sampling to (1) aid in establishing causal relationships; and (2) to generate accurate descriptions of population parameters. It is necessary to evaluate alternatives to random sampling because it is often not feasible to apply this methodology. Deliberate sampling for heterogeneity can itself be seen as an application of critical multiplism. A model is suggested for utilizing deliberate sampling for heterogeneity when the population parameters are unknown. The model, along with critical multiplism, is applied in a study of the psychosocial rehabilitation workforce. The data suggests that deliberate sampling for heterogeneity may be more useful for generating theories and hypotheses than for generating accurate estimates of population parameters.
Evaluating HIV Prevention: A Framework for National, State and Local Levels
Authors: Rugg Deborah , Buehler Jim , Renaud Michelle , Gilliam Aisha , Heitgerd Janet , Westover Bonita , Wright-Deaguero Linda , Bartholow Kelly , Swanson Sue
Published: August 2005

The 21st century brings with it the 20th year of the human immunodeficiency virus (HIV) epidemic in the United States. HIV prevention programs have matured; however, evaluations of those programs have lagged behind. Nationwide, the need for such evaluation has never been greater. It is time to comprehensively assess the status of HIV prevention and control. We must build on previous studies to create a comprehensive, integrated national picture that includes evaluations at national, state, and local levels of the quality, costs, and short- and long-term effectiveness of various HIV prevention programs and policies. The Centers for Disease Control and Prevention (CDC) encourages a phased approach to implementing a comprehensive evaluation strategy. This paper, which describes the 1995-1997 evaluation framework and activities of the Program Evaluation Research Branch, National Center for HIV, Sexually Transmitted Disease (STD), and Tuberculosis (TB) Prevention, is offered as a platform on which future efforts in determining the most effective means to prevent HIV can be built. Lessons learned in developing this comprehensive evaluation framework have advanced HIV prevention. This framework and lessons learned may also, in this era of performance measurement and public accountability, be generalizable beyond HIV prevention to the comprehensive and strategic evaluation of other politically complex, publically-funded disease prevention and health promotion programs.
Using Responsive Evaluation to Evaluate a Professional Conference
Authors: Spiegel Amy N. , Bruning Roger H. , Giddings Lisa
Published: August 2005

In a statewide conference on alternative methods for assessing students’ learning, we incorporated responsive evaluation methods into the structure of the conference. The application of these interactive evaluation techniques serves as a pilot study that illustrates the possible utility of these techniques in evaluating conferences. This paper provides a brief review of the literature surrounding responsive evaluation, a description of the responsive evaluation methods applied to this conference, and a discussion of the results and implications of this pilot study.
Obtaining Active Parental Consent for Evaluation Research: A Case Study
Authors: Johnson Knowlton , Bryant Denise , Rockwell Dward , Moore Mary , Straub Betty Waters , Cummings Patricia , Wilson Carole
Published: August 2005

This study assesses the effectiveness of a strategy for obtaining active written parental consent for the outcome evaluation of an alcohol, tobacco, and other drug (ATOD) abuse prevention program. A local school-based strategy that was implemented in 16 middle schools in ten rural and suburban school districts is presented. Using a multiple case study approach and an adequacy of performance analysis, it was found that seven of the ten districts achieved a minimum consent rate goal set at 70% (ranged from 53% to 85%, average rate of 72%). Only two districts achieved a desired consent rate of 80%. Interviews with a key contact person in each school district provided profile information that distinguished districts that were successful in implementing an active parental consent strategy from those that were not successful. A cost effectiveness analysis showed that this local school-based strategy for obtaining parental consent for program evaluation was more cost effective than in previous studies. However, more than 20% of the data collection costs involved obtaining active written consent. Methodological and practical implications are discussed.
Some Framing Questions About Racism and Evaluation: Thoughts Stimulated by Professor John Stanfield’s “Slipping Through the Front Door”
Authors: Patton Michael Quinn
Published: August 2005

Professor Stanfield’s article (this issue) stimulated several questions that are briefly discussed. How does the lens of race shape and effect our understandings and actions? How do we talk with each other about race and racism? How do we engage each other on these issues authentically at a time dominated by political correctness? What methods and measures fairly capture and communicate the experiences of people of color and the poor? Given the reality-shaping power of racial categories, what variables and categories are meaningful and appropriate? What program outcomes and evaluative judgments are conditioned by racially-shaped assumptions, presumptions, and politics? How do we make ourselves aware of such conditioning and its implications? How do we understand and deal with the paradoxes of race relations without trivializing them by the very act of labeling them as paradoxes? For those of us who are white, where do we look for guidance in matters of race and racism? For those so inclined, how do we find and follow the path to transformation?
AEA, Bold or Timid?
Authors: Bickman Leonard
Published: August 2005

Credentialing and certification are processes that can help the field of evaluation establish a clearer identity as a profession. They will help AEA further establish its presence as the premier organization in evaluation. Altschuld (this issue) proposes a sensible approach, focusing first on credentialing. I argue that we should proceed now.
Reputation, Goodwill, and Loss: Entering the Employee Training Audit Equation
Authors: Clardy Alan
Published: August 2005

Organizations, like individuals, have reputations that create consequences. Six features of organizational reputations are reviewed. A model for how organizational reputation is created is presented, with special attention to the role of employee training in reputation formation. The effects of organizational reputation on a firm's financial performance are reviewed, particularly in terms of goodwill valuation. Employee training practices are identified as one way by which the risks of damage to organizational reputation can be reduced—or enhanced. Specific illustrations of how training enhanced reputation (Navy Seals, FBI, airport screeners) are noted, followed by examples of six different forms of employee training failures that can create negative reputational effects. Based on this analysis, a dozen assessment questions are listed that should be used in auditing the risks to organizational reputation from employee training.
Writing Integrative Literature Reviews: Guidelines and Examples
Authors: Torraco Richard J.
Published: August 2005

The integrative literature review is a distinctive form of research that generates new knowledge about the topic reviewed. Little guidance is available on how to write an integrative literature review. This article discusses how to organize and write an integrative literature review and cites examples of published integrative literature reviews that illustrate how this type of research has made substantive contributions to the knowledge base of human resource development.
A Meta-Review of the Management Development Literature
Authors: Cullen John , Turnbull Sharon
Published: August 2005

An appraisal of recent reviews of the literature on management development demonstrates the existence of a number of perspectives on the topic, and this lack of a uniform approach has contributed to confusion about the subject. This article examines a series of recent and existing literature reviews on the topic of management development. It reviews existing and current syntheses of the management development literature and typological models of management development. The aim of the article is to critically analyze these reviews, with the intention of providing an overview of what has been written about management development during the past 25 years. The article unearths core issues and trends that have emerged in the various “literatures” and provides a synthesis of the concepts and paradigms that emerge from these research literatures. The metareview concludes by proposing a framework/model, within which contributions to the literature on management development can be placed.
Youth culture, music, and cell phone branding in China
Authors: Wang Jing
Published: July 2005

This article tracks the relationship between music and youth culture in China in the context of transnational cell phone branding. A research project conducted by the author as a participant observer/temporary marketing researcher at the Beijing office of transnational advertising agency, Ogilvy, is used to explore a primary academic concern: in what terms should we understand the relationship between music, youth culture, and cool culture in metropolitan China? The article examines the place of music in an emerging brand-conscious youth culture in China and examines what this means for the single-child generation. It questions the assumption that there is a simple equation between cool youth and cool music and concludes by placing the discussion in the context of musical subcultures and musical tribal cultures in China.
Novel lentiviral vectors displaying “early-acting cytokines” selectively promote survival and transduction of NOD/SCID repopulating human hematopoietic stem cells
Authors: Verhoeyen Els , Wiznerowicz Maciej , Olivier Delphine , Izac Brigitte , Trono Didier , Dubart-Kupperschmitt Anne , Cosset François-Loïc
Published: August 2005

A major limitation of current lentiviral vectors (LVs) is their inability to govern efficient gene transfer into quiescent cells, such as human CD34+ cells, that reside in the G0 phase of the cell cycle and that are highly enriched in hematopoietic stem cells. This hampers their application for gene therapy of hematopoietic cells. Here, we designed novel LVs that overcome this restriction by displaying “early-acting cytokines” on their surface. Display of thrombopoietin, stem cell factor, or both cytokines on the LV surface allowed efficient gene delivery into quiescent cord blood CD34+ cells. Moreover, these surface-engineered LVs preferentially transduced and promoted survival of resting CD34+ cells rather than cycling cells. Finally, and most importantly, these novel LVs allowed superior gene transfer in the most immature CD34+ cells as compared to conventional LVs, even when the latter vectors were used to transduce cells in the presence of recombinant cytokines. This was demonstrated by their capacity to promote selective transduction of CD34+ cell in in vitro derived long-term culture-initiating cell (LTC-IC) colonies and of long-term NOD/SCID repopulating cells (SRCs) in vivo.
Nucleophosmin gene mutations are predictors of favorable prognosis in acute myelogenous leukemia with a normal karyotype
Authors: Schnittger Susanne , Schoch Claudia , Kern Wolfgang , Mecucci Cristina , Tschulik Claudia , Martelli Massimo F. , Haferlach Torsten , Hiddemann Wolfgang , Falini Brunangelo
Published: August 2005

Nucleophosmin (NPM1) exon-12 gene mutations are the hallmark of a large acute myelogenous leukemia (AML) subgroup with normal karyotype, but their prognostic value in this AML subset has not yet been determined. We screened 401 AML patients with normal karyotype treated within the German AML Cooperative Group Protocol 99 (AMLCG99) study for NPM1 mutations. Results were related with partial tandem duplications within the MLL gene (MLL-PTD), Fms-like tyrosine kinase 3–length mutations (FLT3-LM), the tyrosine kinase domain of FLT3 (FLT3-TKD), NRAS, KIT, and CEBPA mutations and with clinical characteristics and outcome. NPM1 mutations were detected in 212 (52.9%) of 401 patients. Fourteen mutations, including 8 new variants, were identified. NPM1-mutated cases associated frequently with FLT3 mutations but rarely with other mutations. The NPM1-mutated group had a higher complete remission (CR) rate (70.5% vs 54.7%, P = .003), a trend to a longer overall survival (OS; median 1012 vs 549 days, P = .076), and significantly longer event-free survival (EFS; median 428 vs 336 days; P = .012). The favorable impact of NPM1 mutations on OS and EFS clearly emerged in the large group (264 [66.8%] of 395 cases) of normal-karyotype AML without FLT3-LM. This positive effect was lost in the presence of a concomitant FLT3-LM, since survival of the NPM1+/FLT3-LM+ double positive was similar to NPM1–/FLT3-LM+ cases. In conclusion, this study demonstrates that NPM1+/FLT3-LM– mutations are an independent predictor for a favorable outcome in AML with normal karyotype.
Rescue of “crippled” germinal center B cells from apoptosis by Epstein-Barr virus
Authors: Mancao Christoph , Altmann Markus , Jungnickel Berit , Hammerschmidt Wolfgang
Published: August 2005

Epstein-Barr virus (EBV) is associated with B-cell lymphomas such as Hodgkin lymphoma, Burkitt lymphoma, and post-transplantation lymphoma, which originate from clonal germinal center (GC) B cells. During the process of somatic hypermutation, GC B cells can acquire deleterious or nonsense mutations in the heavy and light immunoglobulin genes. Such mutations abrogate the cell surface expression of the B-cell receptor (BCR), which results in the elimination of these nonfunctional B cells by immediate apoptosis. EBV encodes several latent genes, among them latent membrane protein 1 (LMP1) and LMP2A, which are regularly expressed in EBV-positive Hodgkin lymphoma and posttransplantation lymphomas. Since LMP1 and LMP2A mimic the function of 2 key receptors on B cells, CD40 and BCR, respectively, we wanted to learn whether EBV infection can rescue proapoptotic GC B cells with crippling mutations in the heavy chain immunoglobulin locus from apoptosis. We show here that BCR-negative GC B cells readily enter the cell cycle upon infection with EBV in vitro and yield clonal lymphoblastoid cell lines that are incapable of expressing a functional BCR because the rearranged and formerly functional heavy chain immunoglobulin alleles carry deleterious mutations. Our findings imply an important role for EBV in the process of lymphomagenesis in certain cases of Hodgkin lymphoma and posttransplantation lymphomas.
Service needs of parents with motor or multiply disabled children in Dutch therapeutic toddler classes
Authors: Hendriks Alexander HC , De Moor Jan MH , Oud Johan HL , Franken Waltera M
Published: August 2005

Objective: To determine parents' service needs at the start of therapeutic toddler class treatment, to analyse determinants and to investigate received help after a period of 10 months.

Subjects: Parents with motor or multiply disabled children in therapeutic toddler classes.

Setting: Sixteen out of 17 Dutch rehabilitation centres.

Design: A sample of 84 parents, stratified according to toddler class size.

Main outcome measures: A questionnaire of 33 items, divided into five categories, was designed to assess parents' needs and to evaluate the amount of received help. Several measures were used to assess child, parent and family characteristics.

Results: Based on factor analysis, five need subscales were distinguished which only partially corresponded to the initial categories. The initial category concerning needs for help in family functioning did not come out as a factor. Needs expressed most frequently belonged to the three subscales of needs for information concerning the child. The average level of needs generally did not differ for mothers and fathers across the subscales. However, we found large variation in needs for both mothers and fathers on each subscale. The most important, positively correlated determinant of parents' needs was social isolation of the family. After 10 months a considerable level of unmet needs was found.

Conclusions: A systematic and periodic assessment of individual needs of parents as well as the services offered is recommended. Professionals of the therapeutic toddler classes should especially focus on providing parents with information on their child's disability and therapy, community services and parenting.
Can young severely disabled stroke patients regain the ability to walk independently more than three months post stroke?
Authors: Jackson Diana , Thornton Heather , Turner-Stokes Lynne
Published: August 2005

Objective: To investigate the acquisition of ability to walk independently in young severely disabled stroke patients unable to walk three months after onset.

Setting: A regional rehabilitation unit providing post-acute neurorehabilitation mainly for patients aged 16–65 years.

Subjects and methods: A retrospective analysis of records was undertaken for 152 stroke patients admitted consecutively over a three-year period. All had a combination of physical, cognitive and language impairments; male/female 98/54; median age 54 (IQR 47–60) years.

Main outcome measures: Time taken from stroke onset to regain the ability to walk safely and independently at least 5 metres around the hospital bay.

Results: Seventy-five (49%) regained the ability to walk independently between 3 and 11 months post onset. Patients with cognitive impairments and neglect took longer to walk. Time from stroke onset to admission was longer in patients who did not walk (median 16.3 weeks), than in those who regained walking (median 12.7 weeks; p = 0.009). Independent positive associations were found between the time taken to walk and time from onset to referral for rehabilitation (= 0.55; p < 0.001), and time from acceptance to admission (= 0.30; p = 0.008).

Conclusion: With intensive specialist input, significant numbers of severely disabled young stroke patients can regain independent walking many months after onset, though late walkers may follow a slower recovery course. These results argue for investment in appropriate rehabilitation for these patients. Waiting list delays may prolong rehabilitation and potentially compromise cost effectiveness.
Reliability of lower extremity isokinetic strength testing in adults with stroke
Authors: Pohl Patricia S , Startzell Jill K , Duncan Pamela W , Wallace Dennis
Published: August 2005

Objective: To evaluate the reliability of isokinetic strength testing of knee flexion and extension at 60 degrees per second, and ankle plantar flexion and dorsiflexion at 30 degrees per second in adults with stroke.

Design: Test–retest using intraclass correlation coefficients (ICC).

Setting: Human performance laboratory.

Subjects: Ten adults post stroke with a mean age of 64 years (five males) and 10 adults without neurological injury with a mean age of 69 years (three males) who served as controls.

Main outcome measures: Peak torque and average torque.

Results: The reliability of strength of the less-affected lower extremity was high with values ranging from 0.75 to 0.97. Knee extension, ankle plantar flexion and the peak torque of dorsiflexion were reliable for the affected limb, ranging from 0.80 to 0.90. In contrast, affected knee flexion was not reliable with values of 0.48 and 0.44 for peak torque and average peak torque respectively.

Conclusions: Isokinetic knee and ankle strength of the less-affected limb are reliable. Isokinetic strength of the affected lower extremity is also reliable with the noted exception of knee flexion.
Barriers to achieving evidence-based stroke rehabilitation
Authors: Pollock Alexandra S , Legg Lynn , Langhorne Peter , Sellars Cameron
Published: August 2005

Objective: To determine the perceived barriers to evidence-based practice by health professionals working within the field of stroke rehabilitation.

Design: Focus groups were carried out to identify the perceived barriers; these were followed by a postal questionnaire that asked stroke rehabilitation professionals to rate their agreement with the perceived barriers.

Subjects: One hundred and five stroke rehabilitation professionals participated in the focus groups and were sent the postal questionnaire. Eighty-six responses were returned, from 27 physiotherapists, 26 occupational therapists, 22 nurses, 6 speech and language therapists, and 5 other professionals.

Main outcome measures: Proportion of subjects rating their level of agreement with statements as 1 ‘agree’, 2, 3, 4 or 5 ‘disagree’. Scores of 1 or 2 were classified as ‘agreement’, and scores of 4 or 5 were classified as ‘disagreement’: the percentages of subjects agreeing or disagreeing with each statement were calculated.

Results: Twenty barriers were identified, classified under the headings ‘ability’, ‘opportunity’ and ‘implementation’. Seventy-nine (92%) of all respondents agreed that keeping up to date with research findings was important to them, but only 7 (8%) were happy with the time that they had to do this. Fifty-eight (67%) perceived a need for further training. Only 4 (5%) agreed that it was easy to transfer research findings into their daily practice. A number of significant differences were found between the perceived barriers of different disciplines.
A UK general practice database study of prevalence and mortality of people with neural tube defects
Authors: Lawrenson Ross , Wyndaele Jean-Jaques , Vlachonikolis Ioannis , Farmer Christopher , Glickman Scott
Published: August 2005

Objective: To investigate the prevalence of neural tube defects (NTDs) in the UK and to compare the mortality rate with that of the general population.

Methods: A cross-sectional study. The General Practice Research Database (GPRD) contains the prescribing and diagnostic records since 1990 of over 4 million people from throughout the UK. All patients aged 10–69 and registered on the database in the years 1994–1997 were included in the study. Patients with a diagnosis of NTD were identified from the database and prevalence and standardized mortality ratios in each year were calculated.

Results: The size of the GPRD reduced during the study period – there were 2 116 452 patients aged 10–69 years on the database in 1994, of whom 1751 had a prior record of NTD. In 1997 there were 998 368 patients, of whom 842 had an NTD. The age standardized prevalence between 1994 and 1997 for NTDs ranged between 7.8 and 8.4 per 10 000 for males and 9.0 and 9.4 per 10 000 for females aged 10–69 years. There were 27 deaths in patients with a record of NTD over the four-year study period. The standardized mortality ratio for the years 1994 to 1997 for NTDs ranged between 1.9 and 2.9.

Conclusions: These data give an estimate of the prevalence of NTDs in the general population. They also show that those who have survived to age 10 years still have double the mortality of the general population.