Debra J Holden

Systematic Review: Enhancing the Use and Quality of Colorectal Cancer Screening

BACKGROUND National guideline groups recommend screening and discussion of screening options for persons at average risk for colorectal cancer (CRC). However, emerging evidence suggests that CRC screening is simultaneously underused, overused, and misused and that adequate patient-provider discussions about screening are infrequent. PURPOSE To summarize evidence on factors that influence CRC screening and strategies that increase the appropriate use and quality of CRC screening and CRC screening discussions. DATA SOURCES MEDLINE, the Cochrane Library, and the Cochrane Central Register of Controlled Trials were searched for English-language publications describing studies conducted in the United States from January 1998 through September 2009. STUDY SELECTION Two reviewers independently selected studies that addressed the study questions and met eligibility criteria. DATA EXTRACTION Information on study design, setting, intervention, outcomes, and quality were extracted by one reviewer and double-checked by another. Reviewers assigned a strength-of-evidence grade for intervention categories by using criteria plus a consensus process. DATA SYNTHESIS Reviewers found evidence of simultaneous underuse, overuse, and misuse of CRC screening as well as inadequate clinical discussions about CRC screening. Several patient-level factors were independently associated with lower screening rates, including having low income or less education, being uninsured, being Hispanic or Asian, being less acculturated into the United States, or having limited access to care. Evidence that interventions that included patient reminders or one-on-one interactions (that is, between patients and nonphysician clinic staff), eliminated structural barriers (for example, simplifying access to fecal occult blood test cards), or made system-level changes (for example, using systematic screening as opposed to opportunistic screening) were effective in enhancing use of CRC screening was strong. Evidence on how best to enhance discussions about CRC screening options is limited. No studies focused on reducing overuse, and very few focused on misuse. LIMITATIONS Reporting and publication bias may have affected our findings. The independent effect of individual elements of multicomponent interventions was often uncertain. CONCLUSION Although CRC screening is underused overall, important problems of overuse and misuse also exist. System- and policy-level interventions that target vulnerable populations are needed to reduce underuse. Interventions aimed at reducing barriers by making the screening process easier are likely to be effective. Studies aimed at reducing overuse and misuse and at enhancing the quality and frequency of discussions about CRC screening options are needed. PRIMARY FUNDING SOURCE Agency for Healthcare Research and Quality.

Health Services Research and Data Linkages: Issues, Methods, and Directions for the Future

BACKGROUND Research on pressing health services and policy issues requires access to complete, accurate, and timely patient and organizational data. AIM This paper describes how administrative and health records (including electronic medical records) can be linked for comparative effectiveness and health services research. MATERIALS AND METHODS We categorize the major agents (i.e., who owns and controls data and who carries out the data linkage) into three areas: (1) individual investigators; (2) government sponsored linked data bases; and (3) public-private partnerships that facilitate linkage of data owned by private organizations. We describe challenges that may be encountered in the linkage process, and the benefits of combining secondary databases with primary qualitative and quantitative sources. We use cancer care research to illustrate our points. RESULTS To fill the gaps in the existing data infrastructure, additional steps are required to foster collaboration among institutions, researchers, and public and private components of the health care sector. Without such effort, independent researchers, governmental agencies, and nonprofit organizations are likely to continue building upon a fragmented and costly system with limited access. Discussion. Without the development and support for emerging information technologies across multiple health care settings, the potential for data collected for clinical and transactional purposes to benefit the research community and, ultimately, the patient population may go unrealized. CONCLUSION The current environment is characterized by budget and technical challenges, but investments in data infrastructure are arguably cost-effective given the need to reform our health care system and to monitor the impact of health reform initiatives.

Conceptualizing Youth Empowerment within Tobacco Control

This article presents a conceptual framework that was developed to guide a national evaluation of the American Legacy Foundation’s (Legacy) Statewide Youth Movement Against Tobacco Use (SYMATU) program. This program was designed to develop youth-led, youth-directed initiatives within local communities. Two evaluation studies were designed and implemented from 2000 through 2003: a cross-site study that collected standard data elements across all 17 programs and a case study of five programs that collected formative data on variables thought to affect program implementation. In developing the youth empowerment (YE) conceptual framework, the authors started by reviewing literature to identify the concepts necessary for these types of initiatives and present a summary of their findings here. This article focuses on the development of the authors’overarching conceptual framework used to guide their evaluation studies. Other articles contained within this special issue present results from each of the SYMATU evaluation studies.

Quantifying the Impact of Participation in Local Tobacco Control Groups on the Psychological Empowerment of Involved Youth

A core component of Legacy’s Statewide Youth Movement Against Tobacco Use is the ability of state and local initiatives to empower youth to effect change in their communities. The authors’ conceptual framework proposes that youth empowerment is an outcome of the process by which youths become active participants in local efforts. Youths are proposed to attain specific skills (e.g., assertiveness, advocacy), attitudes (e.g., domain-specific self-efficacy, perceived sociopolitical control, participatory competence), and knowledge of relevant resources. All are proposed outcomes of their individual participation in these local efforts. Data collected in fall 2002 through a tested survey instrument designed to obtain data on key components of empowerment are presented. Regression modeling was used to examine the extent to which characteristics of empowerment are an outcome of individual participation in these groups. A summary of lessons learned pertaining to effectively measuring empowerment and enhancing the empowerment process through local initiatives is provided.

Modeling Psychological Empowerment Among Youth Involved in Local Tobacco Control Efforts

The American Legacy Foundation funded 13 state health departments for their Statewide Youth Movement Against Tobacco Use in September 2000. Its goal was to create statewide tobacco control initiatives implemented with youth leadership. The underlying theory behind these initiatives was that tobacco control efforts can best be accomplished by empowering youth. To evaluate these initiatives, the authors developed a conceptual framework for youth empowerment that was used as a guide in developing standardized cross-site measures. This article describes the domains and attributes used to operationalize psychological empowerment as an outcome of youth involvement in these initiatives and presents results of our two-stage structural equation modeling. We conclude with a summary of lessons learned to date and recommendations for applying these findings to work in the field.

Disparities in timeliness of care for U.S. Medicare patients diagnosed with cancer

BACKGROUND Timeliness of care (rapid initiation of treatment after definitive diagnosis) is a key component of high-quality cancer treatment. The present study evaluated factors influencing timeliness of care for U.S. Medicare enrollees. METHODS Data for Medicare enrollees diagnosed with breast, colorectal, lung, or prostate cancer while living in U.S. seer (Surveillance, Epidemiology and End Results) regions in 2000-2002 were analyzed. Patients were classified as experiencing delayed treatment if the interval between diagnosis and treatment was greater than the 95th percentile for each cancer site. The impacts of patient sociodemographic, clinical, and area-based factors on the likelihood of delayed treatment were analyzed using multivariate logistic regression. RESULTS Black patients (compared with white patients) and patients initially treated with radiation therapy or chemotherapy (rather than surgery) had a greater likelihood of treatment delays across all four cancer sites. Hispanic status, dual Medicare-Medicaid status, location of initial treatment (inpatient vs. outpatient), and stage at diagnosis also affected timeliness of care for some cancer sites. Surprisingly, area-based factors reflecting availability of cancer care services were not significantly associated with timeliness of care or were associated with greater delays in areas with greater numbers of service providers. CONCLUSIONS Multiple factors affected receipt of timely cancer care for members of the study population, all of whom had coverage of medical care services through Medicare. Because delays in treatment initiation can increase morbidity, decrease quality of life, shorten survival, and result in greater costs, prospective studies and tailored interventions are needed to address those factors among at-risk patient groups.

Cancer Plan Index: a measure for assessing the quality of cancer plans.

OBJECTIVE To (1) conduct an in-depth assessment of the content of comprehensive cancer control plans and (2) obtain data that can be used to provide guidance to grantees supported by the Centers for Disease Control and Preventions National Comprehensive Cancer Control Program (NCCCP) as they refine their plans, and to other health professionals as similar planning is done. DESIGN Through an iterative development process, a workgroup of subject matter experts from NCCCP and Research Triangle Institute International (RTI International) identified 11 core or essential components that should be considered in cancer plans on the basis of their professional experience and expertise. They also developed a tool, the Cancer Plan Index (CPI), to assess the extent to which cancer plans addressed the 11 core components. SETTING Sixty-five comprehensive cancer control programs in states, tribes, territories, and jurisdictions funded by the NCCCP. DATA SOURCE Raters reviewed and abstracted all available cancer plans (n = 66), which included plans from 62 funded programs and 4 states of the Federated States of Micronesia funded by Centers for Disease Control and Prevention as a subcontractor of one funded program. Of the 66 plans, 3 plans were used to pilot test the CPI and the remaining 63 plans were subsequently reviewed and abstracted. MAIN OUTCOME MEASURE(S) The primary outcome measures are national-level component scores for 11 defined domains (global involvement of stakeholders, developing the plan, presentation of data on disease burden, goals, objectives, strategies, reduction of cancer disparities, implementation, funds for implementation of plan, evaluation, usability of plan), which represent an average of the component scores across all available cancer plans. RESULTS To aid in the interpretation and usability of findings, the components were segmented into 3 tiers, representing a range high (average score = 2.01-4.00), moderate (average score = 1.01-2.00), and low (average score = 0-1.00) levels of description of the component. Programs overall provided relatively comprehensive descriptions of goals, objectives, and strategies; moderate description of the plan development process, presentation of data on disease burden, and plans on the reduction of cancer disparities; and little to no description of stakeholder involvement plans for implementation, funds for implementation, and evaluation of the plan. CONCLUSIONS Areas of the CPI with low average component scores should stimulate technical assistance to the funded programs, either to increase program activities or to increase discussion of key activities in the plan.

Piloting performance measurement for Comprehensive Cancer Control programs.

OBJECTIVE To implement a pilot test of performance measures for National Comprehensive Cancer Control (CCC) programs funded by the Centers for Disease Control and Prevention (CDC). DESIGN A cross-sectional assessment conducted in 2008. SETTING A total of 65 CCC-funded entities (51 states, 7 tribes, and 7 territories or jurisdictions) representing 69 CCC programs. PARTICIPANTS Comprehensive Cancer Control program staff. MAIN OUTCOME MEASURES In a process that involved stakeholders from funded programs, academia, and nonprofit organizations, the CDC developed a framework for evaluation and a performance measures worksheet containing 11 performance measures for CCC programs that assessed grantee attainment of key components of CCC as required in the funding announcement. The framework was based on a CCC logic model. The performance measures worksheet contained detailed description of the measures, definitions, and suggested data sources for the 11 measures. RESULTS Of the 69 programs, 61 completed the worksheets. The median time reported to complete the worksheet was 10 hours (interquartile range = 6-20). Almost all programs reported having representation of relevant populations in their coalition and having conducted a recent assessment of the burden of cancer. Less frequently, programs reported having a written evaluation plan or having enacted policy changes. Additional performance measures described non-CDC funding, the percentage of partners implementing CCC activities, and the percentage of implemented interventions that were evidence-based. CONCLUSIONS This pilot test of the performance measures worksheet established the feasibility of conducting a standardized survey of CCC programs to identify issues of importance to developing and implementing the CCC program at national and program levels. The performance measures provided unique data on CCC grantees to the CDC funders and feedback on performance measures for improving questions on future surveys. Refinement of the performance measures will provide a tool for monitoring processes of action and accountability of grantees and will encourage a culture of quality improvement through systematic evaluation.

The strategic case for establishing public-private partnerships in cancer care

BackgroundIn 2007, the National Cancer Institute (NCI) launched the NCI Community Cancer Centers Program (NCCCP) as a public-private partnership with community hospitals with a goal of advancing cancer care and research. In order to leverage federal dollars in a time of limited resources, matching funds from each participating hospital were required. The purpose of this paper is to examine hospitals’ level of and rationale for co-investment in this partnership, and whether there is an association between hospitals’ co-investment and achievement of strategic goals.MethodsAnalysis using a comparative case study and micro-cost data was conducted as part of a comprehensive evaluation of the NCCCP pilot to determine the level of co-investment made in support of NCI’s goals. In-person or telephone interviews with key informants were conducted at 10 participating hospital and system sites during the first and final years of implementation. Micro-cost data were collected annually from each site from 2007 to 2010. Self-reported data from each awardee are presented on patient volume and physician counts, while secondary data are used to examine the local Medicare market share.ResultsThe rationale expressed by interviewees for participation in a public-private partnership with NCI included expectations of increased market share, higher patient volumes, and enhanced opportunities for cancer physician recruitment as a result of affiliation with the NCI. On average, hospitals invested resources into the NCCCP at a level exceeding

Book Review: Empowerment Evaluation Principles in Practice:

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