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The role of the haemoglobinopathy nurse counsellor: an exploratory study.

The haemoglobin disorders are among the most common genetically inherited conditions within the United Kingdom. Individuals who are fully affected have severely impaired health while carriers may be faced with difficult reproductive decisions although generally they are well. Policy makers agree that counselling for families at risk should be undertaken in primary care settings and since the early 1980s this service has been undertaken mainly by specialist haemoglobinopathy nurse counsellors. Despite a number of government reports and recommendations for best practice, problems with service provision continue to be highlighted. However, there is little documented information about the work undertaken by the counsellors or how they perceive their role. A descriptive study was therefore conducted to fill this gap. It took the form of a questionnaire survey undertaken with 26 counsellors. The results were analysed by content and used to develop an interview schedule which was employed to obtain more detailed information from staff in four centres. The counsellors suggested that most of their time was spent in client-centred activities and most clients were first seen antenatally. However, there were significant barriers which prevented optimal service provision. These included: problems of communication with other health professionals, obtaining laboratory results crucial to the early identification of couples at risk, late referral from general practitioners and poor facilities for administration, especially maintaining computer databases essential for record keeping. Developing and obtaining written information suitable for families was particularly time-consuming.

Clinical Competence↗

Risk communication in completed series of breast cancer genetic counseling visits.

PURPOSE: There is no consensus on how best to communicate risk in breast cancer genetic counseling. We studied risk communication in completed series of counseling visits and assessed associations with counselees' postcounseling risk perception and satisfaction. METHODS: Pre- and postcounseling questionnaires and videorecordings of all visits were available for 51 affected and unaffected women from families with no known BRCA1/2 mutation, who fulfilled criteria for DNA testing. We developed a checklist for assessing risk communication and counselors' behaviors. RESULTS: General risks were mainly communicated in initial visits, while counselee-specific risks were discussed mainly in concluding visits. The risks discussed most often were conveyed only numerically or qualitatively, and most were only stated positively or negatively. Counselors regularly helped counselees to understand the information, but seldom built on counselees' pre-existing perspective. Counselees' breast cancer risk perception after counseling was unrelated to whether this risk had been explicitly stated. The number of general risks discussed was negatively associated with counselees' satisfaction about counseling. CONCLUSION: Findings suggest that counselors' authority prevails over mutuality with individual counselees, in their communication about risks.

Adolescent↗

Evaluation of nurses and genetic counselors as providers of education about breast cancer susceptibility testing.

PURPOSE/OBJECTIVES: To compare outcomes of pretest education about breast cancer susceptibility testing provided by nurses and genetic counselors. DESIGN: Two-group, post-test only evaluation of an educational intervention. SETTING: A tertiary care hospital. SAMPLE: 87 women who had a first-degree relative with premenopausal breast cancer; six specially-trained providers (four genetic counselors and two nurses). METHODS: Self-administered questionnaire completed immediately following education sessions. MAIN RESEARCH VARIABLES: Subjects' understanding of the limitations of testing, perceived autonomy in decision making, and satisfaction; partnership as perceived by subjects and providers. FINDINGS: After the sessions, 62% of subjects understood the limitations of testing, 98% reported a high degree of perceived autonomy in decision making, 81% were highly satisfied with the session, and 91% reported forming a partnership with their providers. Lower perceived partnership reported by genetic counselors was the only significant difference by provider type. CONCLUSIONS: With training and supervision, nurses and genetic counselors can be equally effective in providing education about genetic testing for breast cancer susceptibility in research settings. Additional research is needed to determine the outcomes of education provided in clinical settings. IMPLICATIONS FOR NURSING PRACTICE: As the demand for education about genetic testing for cancer susceptibility increases, nurses need to be educated and trained to provide this service.

Adult↗

Prenatal genetic counseling for hemoglobinopathy carriers: a comparison of primary providers of prenatal care and professional genetic counselors.

Health personnel trained in medical genetics are insufficient to meet the demand for genetic services. Methods must be found to enable primary care providers to offer commonly needed genetic services themselves. In our recently reported community-wide prenatal screening program for hemoglobinopathies, 36% of women detected to have a hemoglobinopathy did not come to a tertiary center for counseling and thus may have not benefited from testing. To determine whether the efficiency of the program could be increased if counseling were provided by the prenatal care provider (obstetrician or family practitioner), we developed a pilot training program on the basis of our experience in offering such services and enlisted 68% of regional prenatal care providers to participate. The proportion of patients detected to have a hemoglobinopathy who received counseling was similar in the primary and tertiary provider groups: 59% versus 50%, respectively, for sickle trait, and 69% versus 66%, respectively, for beta-thalassemia trait. Knowledge after counseling was also similar for the primary and tertiary provider groups: 64% versus 66% (mean % correct), respectively, for sickle trait, and 79% versus 78%, respectively, for beta-thalassemia trait. However, the two provider groups significantly differed with regard to whether or not the patient had her partner tested. For sickle trait, it was 25% for the primary providers but 49% for the tertiary providers (P < .001). For beta-thalassemia trait, it was 47% for the primary providers but 78% for the tertiary providers (P < .001).(ABSTRACT TRUNCATED AT 250 WORDS)

Female↗

Anticipating the profession's future.

This article considers the future of the physician assistant (PA) profession in light of trends in the US health care system. A bright job outlook is highlighted, and potential new professional roles are discussed. The author predicts opportunities for PAs in health care administration and entrepreneurship, syndromic surveillance and other public health efforts, and health workforce research, among other areas. PAs will be ideal proponents of new models of patients care, particularly with regard to helping health care consumers navigate the changes that will occur as a result of ongoing genetic discoveries. PAs' communication abilities, accessibility to patients, and socialization as team members make them well suited for these new roles.

Forecasting↗

Academic-industry research relationships in genetics: a field apart.

Academic-industry research relationships (AIRRS) have become widely accepted and increasingly common in the life sciences. Using nationwide surveys from the United States, we found significant differences between the AIRRs of genetics firms and faculty and those of other firms and faculty. Significantly more genetics than non-genetics firms funded AIRRs, and genetics firms' AIRRs were larger and longer. Genetics faculty with AIRRs were significantly more likely than non-genetics faculty to report that patents, licenses, new companies and trade secrets had resulted from their university research; and that they had refused to share research results of biomaterials with colleagues.

Academies and Institutes↗

[Actual radiation hazards for the examiner in diagnostic radiology (author's transl)].

Few data are available about radiation exposure of the physician in diagnostic radiology. They are in a range of greater than or equal to 0.1 to 40 mrads per examination. A whole body exposure of approximately 20 mrads per week may result from a rather high frequency of examinations. This value corresponds to 1/5 of the dose limit for radiation workers per week. At the present time, there is no evidence that exposures at such low doses and dose rates increase the genetic and carcinogenic hazards of radiation workers.

Germany, West↗

Significance of the blood beryllium lymphocyte proliferation test.

The blood beryllium lymphocyte proliferation test (BeLPT) is an in vitro measure of the beryllium antigen-specific cell-mediated immune response. This response to beryllium is now understood to play a central role in the immunopathogenesis of chronic beryllium disease (CBD). Although there remain some unresolved methodologic issues with testing, the blood BeLPT has already undergone sufficient development and field assessment to lead to a number of important conclusions: a) The BeLPT identifies beryllium sensitization and CBD earlier and better than any other clinical test presently available. b) The CBD cases identified with the blood test are clinically significant. c) A subset of the people identified by the BeLPT who do not yet have clinical disease will progress and require treatment with corticosteroids for impairing illness. d) The BeLPT can be used to improve clinical diagnostic accuracy and to correct mistaken diagnoses. e) The blood test can be used in screening large numbers of exposed workers because it is sensitive and specific and has high positive and negative predictive value for CBD. f) In every workforce studied to date, the BeLPT has identified beryllium sensitization and CBD that had been missed by conventional screening efforts. g) Worker populations that have been characterized using the BeLPT can help to elucidate the role of exposure genetics and dysregulated inflammation in the genesis of occupational lung disease.

Berylliosis↗