Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease.

Elizabeth Penziner — 2007-10-25T19:53:09-00:00

Am J Med Genet B Neuropsychiatr Genet (19 October 2007)

Potential discrimination from genetic testing may undermine technological advances for health care. Researching long-term consequences of testing for genetic conditions that may lead to discrimination is a public health priority. The consequences of genetic discrimination generate social, health, and economic burdens for society by diminishing opportunities for at-risk individuals in a range of contexts. The current study objective was to investigate perceptions of genetic stigmatization and discrimination among persons who completed predictive testing for Huntington's disease (HD). Using semi-structured interviews and computerized qualitative analysis, the perceptions of 15 presymptomatic persons with a positive gene test predicting HD were examined with regard to differential treatment following testing. The sample comprised 11 women and 4 men, mostly married (73%), aged between 22 and 62 years, with an average education of 14.6 years (SD +/- 2.57) and residing in urban, rural and suburban settings of eight U.S. States. Participants reported perceptions of consequences following disclosure of genetic test results in three areas: employment, insurance, and social relationships. Although most employed participants (90%) revealed their test results to their employers, nearly all reported they would not disclose this information to future employers. Most (87%) participants disclosed test results to their physician, but a similar majority (83%) did not tell their genetic status to insurers. Most participants (87%) disclosed test results to family and peers; patterns of disclosure varied widely. Discrimination concerns remain high in this sample and point to the need for more information to determine the extent and scope of the problem. (c) 2007 Wiley-Liss, Inc.

Deficits in communication and information transfer between hospital-based and primary care physicians: implications for patient safety and continuity of care.

S Kripalani — 2007-07-14T03:58:57-00:00

JAMA, Vol. 297, No. 8. (28 February 2007), pp. 831-841.

CONTEXT: Delayed or inaccurate communication between hospital-based and primary care physicians at hospital discharge may negatively affect continuity of care and contribute to adverse events. OBJECTIVES: To characterize the prevalence of deficits in communication and information transfer at hospital discharge and to identify interventions to improve this process. DATA SOURCES: MEDLINE (through November 2006), Cochrane Database of Systematic Reviews, and hand search of article bibliographies. STUDY SELECTION: Observational studies investigating communication and information transfer at hospital discharge (n = 55) and controlled studies evaluating the efficacy of interventions to improve information transfer (n = 18). DATA EXTRACTION: Data from observational studies were extracted on the availability, timeliness, content, and format of discharge communications, as well as primary care physician satisfaction. Results of interventions were summarized by their effect on timeliness, accuracy, completeness, and overall quality of the information transfer. DATA SYNTHESIS: Direct communication between hospital physicians and primary care physicians occurred infrequently (3%-20%). The availability of a discharge summary at the first postdischarge visit was low (12%-34%) and remained poor at 4 weeks (51%-77%), affecting the quality of care in approximately 25% of follow-up visits and contributing to primary care physician dissatisfaction. Discharge summaries often lacked important information such as diagnostic test results (missing from 33%-63%), treatment or hospital course (7%-22%), discharge medications (2%-40%), test results pending at discharge (65%), patient or family counseling (90%-92%), and follow-up plans (2%-43%). Several interventions, including computer-generated discharge summaries and using patients as couriers, shortened the delivery time of discharge communications. Use of standardized formats to highlight the most pertinent information improved the perceived quality of documents. CONCLUSIONS: Deficits in communication and information transfer at hospital discharge are common and may adversely affect patient care. Interventions such as computer-generated summaries and standardized formats may facilitate more timely transfer of pertinent patient information to primary care physicians and make discharge summaries more consistently available during follow-up care.

CiteULike: carlblesius Williams

Perceptions of discrimination among persons who have undergone predictive testing for Huntington's disease.

Deficits in communication and information transfer between hospital-based and primary care physicians: implications for patient safety and continuity of care.