Practice patterns, beliefs, and perceived barriers to care regarding dementia: a report from the American Academy of Family Physicians (AAFP) national research network.

PURPOSE: Given the increasing age of the US population, understanding how primary care is delivered surrounding dementia and physicians' perceived barriers and needs associated with this care is essential. METHODS: A 29-item questionnaire was developed by project investigators and family physician consultants and mailed to a random sample of 1500 US members of the American Academy of Family Physicians in 2008; 2 follow-up mailings were sent to nonrespondents. Physicians were queried about sociodemographic characteristics, practice patterns, and beliefs (including challenges, barriers, and needs) about care processes focusing on dementia among older patients. RESULTS: The response rate was 60%, with respondents statistically comparable (P > .05) to the American Academy of Family Physicians physician population. Among physicians, 93% screen and/or conduct diagnostic evaluations for dementia in older patients, whereas 91% provide ongoing primary care for patients with dementia whether or not they screen for or diagnose dementia. Forty percent of physicians refer some patients with suspected dementia to other providers (primarily neurologists) to verify diagnosis, for comanagement, or both. Factors affecting the diagnosis of dementia and the delivery of dementia care included patient behavior challenges (aggressiveness, restlessness, paranoia, wandering); comorbidities (falls, delirium, adverse medication reactions, urinary incontinence); caregiver challenges (fatigue, planning for patient's institutional placement, anger); and structural barriers (clinician time, time required for screening, limited treatment options). Tools needed to provide enhanced dementia care included better assessment tools, community resources, and diagnostic and screening tools. CONCLUSION: Family physicians are highly involved in the assessment and routine care of patients with suspected dementia or diagnosed with dementia, although a relative few are not. This is despite the recognized challenges physicians encounter in the assessment and care processes.

Practice-based research network studies and institutional review boards: two new issues.

BACKGROUND: Practice-based research network (PBRN) study investigators must interface with multiple Institutional Review Boards (IRBs), many of which are unfamiliar with PBRN research. OBJECTIVE: To present 2 IRB-related issues that have not appeared in the literature but occurred during the course of a large 5-year PBRN study involving 32 sites dispersed around the United States. RESULTS: Our study required IRB approval from a total of 19 local, hospital, academic center, and professional organization-based IRBs that reviewed a protocol of postpartum depression screening and follow-up completed in English or Spanish. Initial approval of the protocol and consent forms proceeded with only the usual barriers of submitting 19 different forms, and no protocol amendments were required. However, 2 unanticipated IRB issues provided significant additional work for the study team and the local practice sites. First, several IRBs required staff to repeat human subjects training every 1 to 2 years, resulting in 92 practicing physicians, residents, and members of the nursing staff spending time completing the exact same human subjects' training at least twice during the course of this study. Second, 17 of the 19 IRBs required that the patient be given consent forms that were newly stamped and dated each year, requiring the central site to reprint and replace consent forms yearly. Because not all IRBs returned the newly stamped and dated forms in a timely fashion, study enrollment with valid consent forms was interrupted in 4 sites for periods of 2 to 13 weeks. CONCLUSIONS: IRB requirements not directly responsive to federal regulations can add significant costs, frustrations, and burdens to PBRN studies. Non-federally mandated IRB requirements should be based on an identified need with evidence to support the solution.