Research Partnerships with Healthcare Providers in Rural Community Health Centers: Needs and Challenges in Diabetes Research.

Kentucky has among the highest rates of diabetes and obesity in the United States. The Kentucky Diabetes and Obesity Collaborative (KDOC) was designed to develop a novel research infrastructure that can be used by researchers focusing on obesity and diabetes among patients cared for by Federally Qualified Health Centers (FQHC) serving rural Kentucky. Focus groups were carried out to develop an understanding of the needs and interests of FQHC practitioners and staff regarding participation in KDOC. Focus groups were conducted with 6 FQHCs and included a total of 41 individuals including health care providers, administrative staff and clinical staff. The discussions ranged in time from 30 to 70 minutes and averaged 45 minutes. Analysis of the transcripts of the focus groups revealed 4 themes: 1) contextual factors, 2) infrastructure, 3) interpersonal relationships, and 4) clinical features. The participants also noted four requirements that should be met for a research project to be successful in rural primary care settings: 1) there must be a shared understanding of health priorities of rural communities between the researcher and the practices/providers; 2) the proposed research must be relevant to clinics and their communities; 3) research and recommendations for evidence-based interventions need to reflect the day-to-day challenges of rural primary care providers; and 4) there needs to be an understanding of community norms and resources. Although research-clinic partnerships were viewed favourably overall, challenges in data integration to support both research and clinical outcomes were identified.

Increased resting energy expenditure is associated with failure to thrive in infants with severe combined immunodeficiency.

OBJECTIVES: To measure resting energy expenditure (REE) and determine whether increased REE (hypermetabolism) is associated with failure to thrive (FTT) in patients with severe combined immunodeficiency (SCID) at diagnosis. STUDY DESIGN: REE was measured in 26 patients with SCID in a single transplant center. Predicted REE was determined with World Health Organization standards. Measured REE >110% of predicted REE was classified as hypermetabolism. Other data collected included FTT status, infections, genotype, phenotype, and the feeding methods used. RESULTS: Fifteen of 26 patients (57.7%) had FTT, and 18 of 26 patients (69.2%) were hypermetabolic. Hypermetabolism occured in 14 of 15 patients (93%) with FTT, and only 4 of 11 patients (36%) without FTT had hypermetabolism (P = .003). There was a significant difference between the measured REE (71.75 ± 16.6 kcal/kg) and the predicted REE (52.85 ± 2.8 kcal/kg; P < .0001). Eleven of 17 patients (65%) required nasogastric feeding, parenteral nutrition, or both to meet their energy needs. CONCLUSIONS: Hypermetabolism is common in patients with SCID and may contribute to the development of FTT. The hypermetabolism in these patients may necessitate intensive nutrition support.

Cancer risk assessment by rural and Appalachian family medicine physicians.

CONTEXT: Challenges to the identification of hereditary cancer in primary care may be more pronounced in rural Appalachia, a medically underserved region. PURPOSE: To examine primary care physicians' identification of hereditary cancers. METHODS: A cross-sectional survey was mailed to family physicians in the midwestern and southeastern United States, stratified by rural/non-rural and Appalachian/non-Appalachian practice location (n = 176). Identification of hereditary breast-ovarian cancer (BRCA1/2), hereditary non-polyposis colon cancer (HNPCC), and other hereditary cancers was assessed. FINDINGS: Less than half of physicians (45%) reported having patients with cancer genetic testing. Most (70%) correctly identified the BRCA1/2-relevant scenario; 49% correctly identified the HNPCC-relevant scenario. Factor analysis of psychosocial variables revealed 2 factors: Confidence (knowledge, comfort, confidence) and importance (responsible, important, effective, need) of identifying hereditary cancer. Greater confidence was associated with use of 3 generation pedigree in taking family history. Greater knowledge and access to genetic services were associated with use of genetic testing. More recent graduation year, greater knowledge, and greater confidence were associated with identifying the BRCA1/2-relevant scenario. Greater knowledge and confidence were associated with identifying the HNPCC-relevant scenario. CONCLUSIONS: Though rural Appalachian physicians do not differ in ability to identify high risk individuals, access barriers may exist for genetic testing. Interventions are needed to boost physician confidence in identifying hereditary cancer and to improve availability and awareness of availability of genetic services.

Cardiovascular risk education and social support (CaRESS): report of a randomized controlled trial from the Kentucky Ambulatory Network (KAN).

PURPOSE: Test a practice-based intervention to foster involvement of a relative or friend for the reduction of cardiovascular risk in patients with type 2 diabetes. METHODS: We enrolled in a randomized controlled trial 199 patients and 108 support persons (SPs) from 18 practices within a practice-based research network. All patient participants had type 2 diabetes with suboptimal blood pressure control and were prepared to designate a SP. A subset of the patients also had dyslipidemia. All study visits were conducted at the practice sites where staff took standardized blood pressure measurements and collected blood samples. All patients completed one education session and received newsletters aimed at improving key health behaviors. Intervention group patients included their chosen SP in the education session and the SPs received newsletters. RESULTS: After 9 to 12 months, the intervention had no significant effect on systolic blood pressure, HbA1C, health-related quality of life, patient satisfaction, medication adherence, or perceived health competence. Power was insufficient to detect an effect on low-density lipoprotein cholesterol. Baseline cardiovascular risk values were not very high, with mean systolic blood pressure at 140 mm Hg; mean HbA1C at 7.6%; and mean low-density lipoprotein at 137 mg/dL. Patient health care satisfaction was high. CONCLUSION: This practice-based intervention to foster social support for chronic care management among diabetics had no significant impact on the targeted outcomes.

Nutritional issues in infants with cancer.

Cancer and cancer therapy may have adverse effects on food intake, absorption and metabolism resulting in malnutrition. Malnutrition can adversely affect tolerance of therapy and hence overall survival. Malnutrition is of particular concern in infants and young children due to limited reserves and the effect undernutrition can play on a patient's weight gain, growth, immune function and overall well-being.

Patients, practices, and relationships: challenges and lessons learned from the Kentucky Ambulatory Network (KAN) CaRESS clinical trial.

The Cardiovascular Risk Education and Social Support (CaRESS) study is a randomized controlled trial that evaluates a social support intervention toward reducing cardiovascular risk in type 2 diabetic patients. It involves multiple community-based practice sites from the Kentucky Ambulatory Network (KAN), which is a regional primary care practice-based research network (PBRN). CaRESS also implements multiple modes of data collection. The purpose of this methods article is to share lessons learned that might be useful to others developing or implementing complex studies that consent patients in PBRNs. Key points include building long-term relationships with the clinicians, adaptability when integrating into practice sites, adequate funding to support consistent data management and statistical support during all phases of the study, and creativity and perseverance for recruiting patients and practices while maintaining the integrity of the protocol.

How and why to study the practice content of a practice-based research network.

BACKGROUND: We describe the rationale, methods, and important lessons learned from doing a practice content study in a new practice-based research network (PBRN). METHODS: We performed a modified replication of the National Ambulatory Medical Care Survey (NAMCS) in the Kentucky Ambulatory Network (KAN). Network clinicians had input into focused modifications of the NAMCS protocol, including addition of data fields of special interest to them. Cross-sectional sampling of patient visits was done for a 1-year period, with each practice collecting data during 2 separate weeks. We used selected results to illustrate lessons learned and the value of this endeavor. RESULTS: Twenty-three KAN clinicians helped recruit 33 of their colleagues, and these 56 community-based primary care clinicians collected data on 2,228 office visits. Patient demographics (except race) and the top 10 diagnoses were similar to US NAMCS data. One third of visits addressed 3 or more diagnoses, and one fourth of the visits involved 4 or more medications. The top 10 primary diagnoses represented only one third of all primary diagnoses. Seventy percent of adult patients were either overweight (30%) or obese (40%). Rates of counseling on diet or exercise rose with increases in body mass index. CONCLUSION: This study helped us establish and activate our new PBRN, increasing its membership in the process. The descriptive data gained will stimulate, guide, and support our future research activities.