Inflammatory breast cancer (IBC) advocacy-Past, present and future!

Patient advocates, referring to those individuals that have been diagnosed with the disease for which they advocate, are essential stake holders in healthcare. For those facing the stages of being diagnosed with Inflammatory Breast Cancer (IBC), the "call to advocate" is an immediate response to being diagnosed with a rare and aggressive disease that progresses rapidly, often in a matter of weeks or months. There is a great stigma and bias in the medical community that has inhibited the education and study of IBC. A lack of understanding of the disease, how it presents and how to treat it leaves many IBC patients facing misdiagnosis. Communication is a cornerstone of healthcare; this goes beyond the patient-provider dynamic. Education of IBC must be a grassroots initiative. There should be no barrier to care in the diagnosis, treatment, study and survivorship of inflammatory Breast Cancer. It is not just an oncologist's lesson to learn, but that of all providers in healthcare. In this chapter you will hear how 4 women who were diagnosed with IBC faced the difficult tasks of navigating through the healthcare system on their own and came out on the other side using their experience to help others. In conclusion, in defining the evolving roles of Patient Advocacy in IBC over the past 25 years, we examine what has been done, along with its challenges, and what work still remains from the perspectives of different patient advocates.

Methods for synthesizing findings on moderation effects across multiple randomized trials.

This paper presents new methods for synthesizing results from subgroup and moderation analyses across different randomized trials. We demonstrate that such a synthesis generally results in additional power to detect significant moderation findings above what one would find in a single trial. Three general methods for conducting synthesis analyses are discussed, with two methods, integrative data analysis and parallel analyses, sharing a large advantage over traditional methods available in meta-analysis. We present a broad class of analytic models to examine moderation effects across trials that can be used to assess their overall effect and explain sources of heterogeneity, and present ways to disentangle differences across trials due to individual differences, contextual level differences, intervention, and trial design.

Community-Based Approach to Assess Obstructive Respiratory Diseases and Risk in Urban African American Churches.

Asthma, and chronic obstructive pulmonary disease (COPD) are significant health problems that have disparate effects on many Americans. Misdiagnosis and underdiagnosis are common and lead to ineffective treatment and management. This study assessed the feasibility of applying a two-step case-finding technique to identify both COPD and adult asthma cases in urban African American churches. We established a community-based partnership, administered a cross-sectional survey in step one of the case-finding technique and performed spirometry testing in step two. A total of 219 surveys were completed. Provider-diagnosed asthma and COPD were reported in 26% (50/193) and 9.6% (18/187) of the sample. Probable asthma (13.9%), probable COPD (23.1%), and COPD high-risk groups (31.9%) were reported. It is feasible to establish active case-finding within the African American church community using a two-step approach to successfully identify adult asthma and COPD probable cases for early detection and treatment to reduce disparate respiratory health outcomes.

Prescription drug abuse among adolescent arrestees: correlates and implications.

This preliminary study examines the correlates of prescription drug abuse in a sample of adolescents in an urban juvenile detention center in Ohio. The study measures risk in 359 incarcerated females (20.1%) and 1,425 males (79.9%) by asking questions related to problems with alcohol, drug use, treatment history, mental and physical health problems, sexual behavior, anger management, physical violence, and family support. The results of the study suggest that incarcerated adolescents may benefit from interventions targeting prescription drug misuse. Female adolescent detainees abuse prescription drugs at a higher level than male adolescent detainees (17% vs. 10%). The correlates of prescription drug abuse are complex and multidimensional and offer opportunities for further study.

Brief motivational intervention to reduce HIV risk and to increase HIV testing among offenders under community supervision.

Risky drug- and sex-related behaviors put criminal offenders at high risk for HIV. Intervening with this population under supervision can potentially reduce risk. This study reports a randomized trial that examines the efficacy of brief negotiation interviewing (BNI) compared to usual education activities. BNI is a computerized, self-directed intervention that combines a short structured interview with a brief counseling session. The study examined whether BNI could decrease HIV risks and increase testing for HIV in a cohort of criminal-justice-involved clients. The trial randomly assigned 212 participants to experimental (108) and control (104) conditions. Interview data were collected at baseline and at 2-month follow-up. Results indicate that the BNI intervention group had a significantly higher rate of HIV testing and was more likely to consider behavioral changes.

The influence of program mediators on eleventh grade outcomes for seventh grade substance users and nonusers.

OBJECTIVES: In their work examining the effects of the Take Charge of Your Life (TCYL) program, Sloboda and colleagues (This Issue) found that the TCYL program had significant positive effects on baseline marijuana users and significant negative effects on baseline nonusers of cigarettes and alcohol. METHODS: Mediational analyses were used to understand why the program had these differential impacts on baseline users and nonusers. RESULTS: Path models for binary outcomes revealed significant program impacts on marijuana normative beliefs and refusal skills. The treatment impacts were between 1.5 and 3 times larger for the baseline users than for nonusers. These direct effects of the program on normative beliefs and refusal skills mediated the treatment impact on use for baseline marijuana users. In contrast, the negative treatment effects on alcohol and cigarette use could not be explained by the program's targeted mediators (normative beliefs, refusal skills, consequences, attitudes and intentions). The direct effects of treatment on use for the baseline nonusers of cigarettes and alcohol remain unexplained. CONCLUSIONS: Possible explanations for this pattern and implications for strengthening universal prevention programs that are delivered to both users and nonusers are discussed. The importance of mediational analyses for programs that show negative impacts, as well as for those that show positive impacts is stressed.

Universal school-based substance abuse prevention programs: Modeling targeted mediators and outcomes for adolescent cigarette, alcohol and marijuana use.

OBJECTIVE: We examined the relationships among targeted constructs of social influences and competence enhancement prevention curricula and cigarette, alcohol and marijuana use outcomes in a diverse sample of high school students. We tested the causal relationships of normative beliefs, perceptions of harm, attitudes toward use of these substances and refusal, communication, and decision-making skills predicting the self-reported use of each substance. In addition, we modeled the meditation of these constructs through the intentions to use each substance and tested the moderating effects of the skills variables on the relationships between intentions to use and self-reported use of each of these substances. METHODS: Logistic regression path models were constructed for each of the drug use outcomes. Models were run using the Mplus 5.0 statistical application using the complex sample function to control for the sampling design of students nested within schools; full information maximum likelihood estimates (FIML) were utilized to address missing data. RESULTS: Relationships among targeted constructs and outcomes differed for each of the drugs with communication skills having a potentially iatrogenic effect on alcohol use. Program targets were mediated through the intentions to use these substances. Finally, we found evidence of a moderating effect of decision-making skills on perceptions of harm and attitudes toward use, depending upon the outcome. CONCLUSIONS: Prevention curricula may need to target specific drugs. In addition to normative beliefs, perceptions of harm, and refusal and decision-making skills, programs should directly target constructs proximal to behavioral outcomes such as attitudes and intentions. Finally, more research on the effects of communication skills on adolescent substance use should be examined.

Is the receptivity of substance abuse prevention programming affected by students' perceptions of the instructor?

Drawing on the elaboration likelihood model of persuasive communication, the authors examine the impact of the perceptions of the instructor or source on students' receptivity to a new substance abuse prevention curriculum. Using survey data from a cohort of students participating in the Adolescent Substance Abuse Prevention Study, the authors use structural equation modeling to determine the effects of the perceptions students have of their program instructor on measures of the targeted program mediators and the use of cigarettes, alcohol, and marijuana. They test these instructor effects after each component of a two-part curriculum is administered (during the seventh and ninth grades). They find that the perceptions of the instructor significantly affect refusal, communication and decision-making skills, normative beliefs, perceived consequences of use, and substance use. The authors discuss the implications of these findings for school-based prevention programming and indications for further research.

Implementation fidelity: the experience of the Adolescent Substance Abuse Prevention Study.

While researchers have developed more effective programs and strategies to prevent the initiation of substance use and increasingly communities are delivering these interventions, determining the degree to which they are delivered as they were designed remains a significant research challenge. In the past several years, more attention has been given to implementation issues during the various stages of program development and diffusion. This paper presents the findings from a substudy of an evaluation of a newly designed middle and high school substance abuse prevention program, Take Charge of Your Life delivered by local Drug Abuse Resistance Education officer instructors. A key aspect of the study was to determine the extent to which implementation fidelity, using the measures of content coverage and appropriate instructional strategy, was associated with improvement in the program mediators of realistic normative beliefs, understanding the harmful effects of substance use and the acquisition of decision-making and resistance skills. Although it was found that higher fidelity was associated with better scores on some of the mediators, this was not a consistent finding. The mixed results are discussed within the context of the lesson activities themselves.

The Adolescent Substance Abuse Prevention Study: A randomized field trial of a universal substance abuse prevention program.

OBJECTIVES: The purpose of the study was to determine whether a universal school-based substance abuse prevention program, Take Charge of Your Life (TCYL), prevents or reduces the use of tobacco, alcohol, or marijuana. METHODS: Eighty-three school clusters (representing school districts) from six metropolitan areas were randomized to treatment (41) or control (42) conditions. Using active consenting procedures, 19,529 seventh graders were enrolled in the 5-year study. Self-administered surveys were completed by the students annually. Trained Drug Abuse Resistance Education (D.A.R.E.) police officers presented TCYL in seventh and ninth grades in treatment schools. Analyses were conducted with data from 17,320 students who completed a baseline survey. Intervention outcomes were measured using self-reported past-month and past-year use of tobacco, alcohol, and marijuana when students were in the 11th grade. RESULTS: Main effect analyses show a negative program effect for use of alcohol and cigarettes and no effect for marijuana use. Subgroup analyses indicated that the negative effect occurred among nonusers at baseline, and mostly among white students of both genders. A positive program effect was found for students who used marijuana at baseline. Two complementary papers explore the relationship of the targeted program mediators to the use of alcohol, tobacco, and marijuana and specifically for students who were substance-free or who used substances at baseline. CONCLUSIONS: The negative impact of the program on baseline nonusers of alcohol and tobacco indicate that TCYL should not be delivered as a universal prevention intervention. The finding of a beneficial effect for baseline marijuana users further supports this conclusion. The programmatic and methodological challenges faced by the Adolescent Substance Abuse Prevention Study (ASAPS) and lessons learned offer insights for prevention researchers who will be designing similar randomized field trials in the future.

Reports of substance abuse prevention programming available in schools.

Evaluations of school-based substance abuse prevention programs with schools or school districts randomly assigned to either the treatment or control condition have demonstrated effective strategies over the past 30 years. Although control schools were never considered "pure" (i.e., no other interventions were being offered), school-based programming in the 1980s did not include evidence-based interventions. Since the late 1990s, funding agencies have required schools either to select programming from approved lists of prevention strategies or to demonstrate the efficacy of the strategies that would be used. This has increased the number of schools delivering evidence-based programs to their students. As a result, "treatment as usual" is more challenging to researchers. This paper describes exposure to prevention programming as reported by 204 school administrators from 83 districts and their 19,200 students who are participating in the Adolescent Substance Abuse Prevention Study, a national randomized evaluation trial of the program, Take Charge of Your Life. In order to determine the extent of student exposure to prevention programming in both the control and treatment schools, data were collected in each of the 5 years of the study from two sources: principals and prevention coordinators and from students. The data provided by the principals and prevention coordinators indicate that the vast majority of schools assigned to the control condition offered students drug prevention programming. This finding has implications for the evaluation of Take Charge of Your Life but also for other evaluation studies. The students were asked questions regarding participation in drug education posed on annual surveys. When their responses were compared to the reports from their school principals and prevention coordinators, it was found that the students underreported exposure to drug education. A follow-up qualitative study of a sample of students suggests the need for rewording of the questions for students in future studies. The implications of our findings for evaluation studies are discussed.