A pilot study for using fecal immunochemical testing to increase colorectal cancer screening in Appalachia, 2008-2009.

INTRODUCTION: The Appalachian region of the United States has disproportionately high colorectal cancer (CRC) death rates and low screening rates. The purpose of this pilot study was to assess acceptability of a take-home fecal immunochemical test (FIT) and the effect of follow-up telephone counseling for increasing CRC screening in rural Appalachia. METHODS: We used a prospective, single-group, multiple-site design, with centralized laboratory reports of screening adherence and baseline and 3-month questionnaires. Successive patients, aged 50 or older, at average CRC risk and due for screening were enrolled during a routine visit to 3 primary care practices in rural Appalachian Pennsylvania and received a free take-home FIT and educational brochure. Those who had not returned the test 2 weeks later were referred for telephone counseling. RESULTS: Of 232 patients approached, 200 (86.2%) agreed to participate. Of these, 145 (72.5%) completed the FIT as recommended (adherent) and 55 (27.5%) were referred for telephone counseling (nonadherent), of whom 23 (41.8%) became adherent after 1 to 2 counseling sessions, an 11.5 percentage-point increase in screening after telephone counseling and 84% FIT adherence overall. Lack of CRC-related knowledge and perceived CRC risk were the screening barriers most highly associated with nonadherence. Although not statistically significant, the rate of conversion to screening adherence was higher among participants who received telephone counseling compared to an answering machine reminder. CONCLUSION: If confirmed in future randomized trials, provider-recommended take-home FIT and follow-up telephone counseling may be methods to increase CRC screening in Appalachia.

An increase in HPV-related knowledge and vaccination intent among parental and non-parental caregivers of adolescent girls, age 9-17 years, in Appalachian Pennsylvania.

A theory and community-based educational intervention was designed to increase HPV-related knowledge and intent to vaccinate adolescent girls, against human papillomavirus (HPV) in Appalachia, a region with high cervical cancer incidence and mortality. An HPV educational session was conducted with immediate pre-/post-test questionnaires and 1-month follow-up telephone interview. McNemar tests and paired t tests evaluated change in individual knowledge variables and change in overall knowledge and intent to vaccinate against HPV, respectively. Of 117 attendees, 38 (32.5%) were parents of vaccine-eligible daughters and 79 (67.5%) non-parental caregivers. HPV-related knowledge increased for all participants (p < 0.0001) and among parents (p < 0.0001). Intent to vaccinate daughters within 1 month increased among parents (p = 0.002). Of nine (23.7%) parents who completed the follow-up interview, 100% reported the intervention as helpful and 44.4% reported that they started vaccination. Our education intervention was associated with increased HPV-related knowledge and intent to vaccinate girls in Appalachia against HPV.

Academic detailing to increase colorectal cancer screening by primary care practices in Appalachian Pennsylvania.

BACKGROUND: In the United States, colorectal cancer (CRC) is the third most frequently diagnosed cancer and second leading cause of cancer death. Screening is a primary method to prevent CRC, yet screening remains low in the U.S. and particularly in Appalachian Pennsylvania, a largely rural area with high rates of poverty, limited health care access, and increased CRC incidence and mortality rates. Receiving a physician recommendation for CRC screening is a primary predictor for patient adherence with screening guidelines. One strategy to disseminate practice-oriented interventions is academic detailing (AD), a method that transfers knowledge or methods to physicians, nurses or office staff through the visit(s) of a trained educator. The objective of this study was to determine acceptability and feasibility of AD among primary care practices in rural Appalachian Pennsylvania to increase CRC screening. METHODS: A multi-site, practice-based, intervention study with pre- and 6-month post-intervention review of randomly selected medical records, pre- and post-intervention surveys, as well as a post-intervention key informant interview was conducted. The primary outcome was the proportion of patients current with CRC screening recommendations and having received a CRC screening within the past year. Four practices received three separate AD visits to review four different learning modules. RESULTS: We reviewed 323 records pre-intervention and 301 post-intervention. The prevalence of being current with screening recommendation was 56% in the pre-intervention, and 60% in the post-intervention (p=0.29), while the prevalence of having been screened in the past year increased from 17% to 35% (p<0.001). Colonoscopies were the most frequently performed screening test. Provider knowledge was improved and AD was reported to be an acceptable intervention for CRC performance improvement by the practices. CONCLUSIONS: AD appears to be acceptable and feasible for primary care providers in rural Appalachia. A ceiling effect for CRC screening may have been a factor in no change in overall screening rates. While the study was not designed to test the efficacy of AD on CRC screening rates, our evidence suggests that AD is acceptable and may be efficacious in increasing recent CRC screening rates in Appalachian practices which could be tested through a randomized controlled study.

Can telephone counseling post-treatment improve psychosocial outcomes among early stage breast cancer survivors?

OBJECTIVE: To determine whether a telephone counseling program can improve psychosocial outcomes among breast cancer patients post-treatment. METHODS: A randomized trial was conducted involving 21 hospitals and medical centers, with assessments (self-administered questionnaires) at baseline, 12 and 18 months post-enrollment. Eligibility criteria included early stage diagnosis, enrollment during last treatment visit, and the ability to receive the intervention in English. Endpoints included distress (Impact of Event Scale), depression (Center for Epidemiologic Studies Depression Scale), and two study-specific measures: sexual dysfunction and personal growth. The control group (n=152) received a resource directory for breast cancer; the intervention group (n=152) also received a one-year, 16 session telephone counseling program augmented with additional print materials. RESULTS: Significant intervention effects were found for sexual dysfunction at 12 (p=0.03) and 18 months (p=0.04) and personal growth (12 months: p=0.005; 18 months: p=0.03). No differences by group were found in mean scores for distress and depression, with both groups showing significant improvement at 12 and 18 months (all p values for within-group change from baseline were

Human papillomavirus (HPV) vaccine availability, recommendations, cost, and policies among health departments in seven Appalachian states.

Telephone interviews of health department personnel in six states and review of an immunization database from one state were conducted to assess human papillomavirus (HPV) vaccine availability, recommendations, cost, policies, and educational materials in health departments in seven Appalachian states. Most (99.1%) health departments (n=234) reported receiving patient requests for the HPV vaccine, and only two (1%) health departments reported that they did not provide the vaccine for patients. HPV vaccine supply was reported to not meet the demand in 10.5% (24/228) of health departments due to high costs. Level (state, region, county) at which policy about the HPV vaccine was determined, vaccine recommendations, costs, and available educational materials varied among states. This study documented variation in vaccine availability, recommendations, cost, policies, and educational materials in Appalachian health departments that could significantly affect vaccine distribution. Findings highlight the need for more comprehensive and consistent policies that maximize accessibility of the HPV vaccine to women, especially those in underserved areas.

HPV vaccine attitudes and practices among primary care providers in Appalachian Pennsylvania.

INTRODUCTION: The incidence of cervical cancer in Appalachia exceeds the national rate; rural Appalachian women are at especially high risk. We assessed the attitudes and practices related to human papillomavirus vaccination among providers in primary care practices in a contiguous 5-county area of Appalachian Pennsylvania. METHODS: In December 2006 and May 2007, all family medicine, pediatric, and gynecology practices (n = 65) in the study area were surveyed by 2 faxed survey instruments. RESULTS: Of the 65 practices, 55 completed the first survey instrument. Of these 55, 44 offered the vaccine to their patients. Forty of the 44 practices offered it to girls and women aged 9 to 26 years, and 11 were willing to accept referrals from other practices for vaccination. The average reported charge for each of the 3 required injections was $150. Of the 55 practices that responded to the first survey instrument, 49 responded to the second survey instrument, 46 of which recommended the vaccine to their patients. CONCLUSION: The prevalence of offering the vaccine against human papillomavirus was high in this area of Appalachian Pennsylvania. Future interventions may focus on community education because the vaccine is available from most providers.

Informing geospatial toolset design: understanding the process of cancer data exploration and analysis.

There is an increasing need for new methods and tools that support knowledge construction from complex geospatial datasets related to public health. This study is part of a larger effort to develop, implement, and test such methods and tools. To be successful, the design of methods and tools must be grounded in a solid understanding of the work practices within the domain of use; the research reported here focuses on developing that understanding. We adopted a user-centered approach to toolset design where we investigated the work of cancer researchers and used the results of that investigation as inputs into the development of design guidelines for new geovisualization and spatial analysis tools. Specifically, we conducted key informant interviews focused on use, or potential use, of geographic information, methods, and tools and complemented this with a systematic analysis of published, peer-reviewed articles on geospatial cancer research. Results were used to characterize the typical process of analysis, to identify fundamental differences between intensive users of geospatial methods and infrequent users, and to outline key stages in analysis and tasks within the stages that methods and tools must support. Our findings inform design and implementation decisions for visual and analytic tools that support cancer prevention and control research and they provide insight into the processes used by cancer researchers for addressing the challenges of geographic factors in public health research and policy.

Development of community plans to enhance survivorship from colorectal cancer: community-based participatory research in rural communities.

In 2002, 10.4% of the 10 million persons alive who have ever been diagnosed with cancer had colorectal cancer (CRC). Barriers, such as distance, terrain, access to care and cultural differences, to CRC survivorship may be especially relevant in rural communities. We tested the hypothesis that teams from rural cancer coalitions and hospitals would develop a Community Plan (CP) to enhance CRC survivorship. We used community-based participatory research and the PRECEDE-PROCEED model to train teams from rural cancer coalitions and hospitals in Pennsylvania and New York. We measured knowledge at three points in time and tested the change with McNemar's test, corrected for multiple comparisons (p < 0.0167). We also conducted a qualitative review of the CP contents. Fourteen (93.3%) of the 15 coalitions or hospitals initially recruited to the study completed a CP. Knowledge in public health, sponsorship of A National Action Plan for Cancer Survivorship, and CRC survivorship and treatment increased. Teams identified perceived barriers and community assets. All teams planned to increase awareness of community assets and almost all planned to enhance treatment-related care and psychosocial care for the CRC survivor; 50% planned to enhance primary care and CRC screening. The study demonstrated the interest and ability of rural organizations to plan to enhance CRC survivorship, including linkage of CRC survivorship to primary care. Rural cancer coalitions and hospitals may be a vehicle to develop local action for A National Action Plan. Access to more comprehensive care for CRC cancer survivors in rural communities appears to be facilitated by the community-based initiative described and investigated in this study. Efforts such as these could be replicated in other rural communities and may impact the care and quality of life of survivors with many types of cancers. While access to health services may be increased through community-based initiatives, we still need to measure the impact of such initiatives on the long term health and well being of cancer survivors in rural locations.

A survey of patients' experiences with the cancer genetic counseling process: recommendations for cancer genetics programs.

In order to promote ongoing quality improvement of not only the Penn State Cancer Genetics Program, but also other cancer risk assessment programs throughout the country, we developed, piloted and conducted a survey to explore patient expectations, experiences, and satisfaction with the cancer genetic counseling process. The comprehensive survey was mailed to 340 eligible patients, 156 (45.9%) of whom returned the completed survey within the allotted time. Responses to closed-ended questions were tallied and open-ended questions were content analyzed. Major findings show that: (1) Patients were seeking cancer-related information and support throughout the cancer risk assessment process and were interested in participating in available research studies; (2) The setting in which patients are seen for cancer risk assessment may pose potential emotional ramifications; (3) Misperceptions regarding insurance discrimination and lack of insurance coverage persist; (4) Patients view the genetic counselor as responsible for updating them about new discoveries. Specific recommendations for cancer genetics programs are included.

Initiatives of 11 rural Appalachian cancer coalitions in Pennsylvania and New York.

INTRODUCTION: Local coalitions combine the knowledge, expertise, and resources of many individuals and organizations to improve community health. This article describes data from 11 rural cancer coalitions in Pennsylvania and New York collected through a model-based data system. METHODS: The coalition data collection system was adapted from a conceptual model designed to monitor the activities and impact of cardiovascular disease coalitions. Community Coalition Action Theory was used during implementation and validation of the data system. Primary components of the data system were organizational capacity, process, and outcome/impact. RESULTS: From 2002 to 2004, the 11 coalitions conducted 1369 initiatives, including 1147 (83.8%) interventions and 222 (16.2%) development activities. Among interventions, 776 (56.7%) were outreach only, 158 (11.5%) education only, 117 (8.5%) outreach and education, and 96 (7.0%) screening. Differences in the distribution of initiatives by coalition, cancer site, and target audience were statistically significant (P < .05). The majority of interventions focused on colorectal (37.0%) and breast (32.9%) cancer. Target groups included women (71.3%), rural residents (32.6%), survivors (21.8%), and low-income (21.8%) individuals. Although not statistically significant, an observed 3-year trend was shown for decreased outreach interventions and increased education and screening interventions. In total, 1951 of 3981 individuals who were offered a cancer screening (49%) completed screening, and 15 sustainable community changes were documented. CONCLUSION: This study reports the initiatives and impact of 11 rural community cancer coalitions over a 3-year period. This study estimates the mix of development activities and community interventions, against which this coalition network and others may be compared.