A B S T R A C T PurposeAlthough guidelines recommend in-person counseling before BRCA1/BRCA2 gene testing, genetic counseling is increasingly offered by telephone. As genomic testing becomes more common, evaluating alternative delivery approaches becomes increasingly salient. We tested whether telephone delivery of BRCA1/2 genetic counseling was noninferior to in-person delivery. Patients and MethodsParticipants (women age 21 to 85 years who did not have newly diagnosed or metastatic cancer and lived within a study site catchment area) were randomly assigned to usual care (UC; n ϭ 334) or telephone counseling (TC; n ϭ 335). UC participants received in-person pre-and post-test counseling; TC participants completed all counseling by telephone. Primary outcomes were knowledge, satisfaction, decision conflict, distress, and quality of life; secondary outcomes were equivalence of BRCA1/2 test uptake and costs of delivering TC versus UC. ResultsTC was noninferior to UC on all primary outcomes. At 2 weeks after pretest counseling, knowledge (d ϭ 0.03; lower bound of 97.5% CI, Ϫ0.61), perceived stress (d ϭ Ϫ0.12; upper bound of 97.5% CI, 0.21), and satisfaction (d ϭ Ϫ0.16; lower bound of 97.5% CI, Ϫ0.70) had group differences and confidence intervals that did not cross their 1-point noninferiority limits. Decision conflict (d ϭ 1.1; upper bound of 97.5% CI, 3.3) and cancer distress (d ϭ Ϫ1.6; upper bound of 97.5% CI, 0.27) did not cross their 4-point noninferiority limit. Results were comparable at 3 months. TC was not equivalent to UC on BRCA1/2 test uptake (UC, 90.1%; TC, 84.2%). TC yielded cost savings of $114 per patient. ConclusionGenetic counseling can be effectively and efficiently delivered via telephone to increase access and decrease costs. J Clin
BRCA1/2 telephone counseling, although leading to lower testing uptake, appears to be safe and as effective as in-person counseling with regard to minimizing adverse psychological reactions, promoting informed decision making, and delivering patient-centered communication for both rural and urban women.
Purpose: To inform development of a culturally sensitive hereditary breast and ovarian cancer communication initiative and related clinical genetic services. Methods: Five focus groups were conducted with 51 female and male Latinos. Educational materials were designed to communicate information about hereditary breast or ovarian cancer and availability of relevant clinical services or prevention strategies. Focus groups explored participants' knowledge, attitudes, and beliefs about hereditary breast and ovarian cancer, BRCA1/2 testing, and communication preferences for hereditary breast and ovarian cancer health messages. Results: Overall, awareness of familial breast and ovarian cancer and availability of genetic risk assessment was low. Once informed, participants held favorable attitudes toward risk assessment and counseling services. Critical themes of the research highlighted the need to provide bilingual media products and use of a variety of strategies to increase awareness about hereditary cancer risk and availability of clinical genetic services. Important barriers were identified regarding family cancer history communication and cancer prevention services. Strategies were suggested for communicating cancer genetic information to increase awareness and overcome these barriers; these included both targeted and tailored approaches. Conclusion: This research suggests that cancer genetic communication efforts should consider community and cultural perspectives as well as health care access issues before widespread implementation. Genet Med 2010:12(2):105-115.
The current article details a position statement and recommendations for future research and practice on planning and implementation intentions in health contexts endorsed by the Synergy Expert Group. The Group comprised world-leading researchers in health and social psychology and behavioural medicine who convened to discuss priority issues in planning interventions in health contexts and develop a set of recommendations for future research and practice. The Expert Group adopted a nominal groups approach and voting system to elicit and structure priority issues in planning interventions and implementation intentions research. Fortytwo priority issues identified in initial discussions were further condensed to 18 key issues, including definitions of planning and implementation intentions and 17 priority research areas.Each issue was subjected to voting for consensus among group members and formed the basis of the position statement and recommendations. Specifically, the Expert Group endorsed statements and recommendations in the following areas: generic definition of planning and specific definition of implementation intentions, recommendations for better testing of mechanisms, guidance on testing the effects of moderators of planning interventions, recommendations on the social aspects of planning interventions, identification of the preconditions that moderate effectiveness of planning interventions, and recommendations for research on how people use plans.
BACKGROUND.Regions of hypoxia within glioblastoma multiforme (GBM) are common and may influence a tumor's aggressiveness, response to treatment, and the patient's overall survival. In this study, the authors examined 4 markers of hypoxia (hypoxia‐inducible factor 1 [HIF‐1α], glucose transporter 1 [GLUT‐1], vascular endothelial growth factor [VEGF], and carbonic anhydrase 9 [CA IX]), cellular proliferation and microvascular density (MVD) indices, extent of surgical resection, and preoperative imaging characteristics and compared them with the overall survival rates of adults with GBM.METHODS.In this retrospective cohort study, patients who had lower grade astrocytomas were compared with patients who had GBM to verify that the methods used could establish differences between tumor grades. By using preoperative imaging, the amount of necrosis was established versus the overall tumor area. The authors also compared preoperative images with postoperative images to define the amount of tumor resected; and they compared molecular markers, proliferation, MVD, and imaging studies with survival among patients who had GBM.RESULTS.The hypoxia‐regulated molecules (HRMs) and indices for MVD and cellular proliferation were associated significantly with tumor grade. Survival was improved when ≥95% of the tumor was resected. Although the total tumor area was associated with overall survival, no differences were observed when the amount of necrosis or a tumor necrosis index (area of necrosis/area of tumor) was compared with survival. The findings indicated that GLUT‐1 and VEGF were correlated with survival after controlling for age.CONCLUSIONS.Tumor grade was differentiated with HRMs, MVD, and proliferation, but only GLUT‐1 predicted survival in this group of patients with GBM. The results suggested that GLUT‐1 may be an important independent prognostic indicator. Cancer 2008. © 2008 American Cancer Society.
Although telephone counseling led to lower testing uptake, our findings suggest that telephone counseling can be effectively used to increase reach and access without long-term adverse psychosocial consequences. Further work is needed to determine long-term adherence to risk management guidelines and effective strategies to boost utilization of primary and secondary preventive strategies.
Background Childhood cancers typically require rigorous treatment at specialized centers in urban areas, which can create substantial challenges for families residing in remote communities. We evaluated the impact of residence and travel time on the burden of care for families of childhood cancer patients. Procedure We conducted a cross-sectional, self-administered survey of 354 caregivers of pediatric cancer patients at a children’s hospital serving a seven state area. Measures included the impact of cancer treatment on relocation, employment, schooling and finances. We evaluated these domains by rural/urban residence and travel time (>1 hour and >2 hours) to the hospital in multivariable regression models. Results Of the 29% of caregivers who reported moving residences since their child was diagnosed, 33% reported that the move was due to their child’s cancer. Rural and remote (e.g., >1 hour travel time) caregivers missed more days of work during the first month after diagnosis than did urban and local caregivers, however, these differences did not persist over the first six months of therapy. One-third of caregivers reported quitting or changing jobs as a direct result of their child being diagnosed with cancer. Rural respondents had greater out-of-pocket travel expenses and reported a significantly greater perceived financial burden. Rural patients missed more school days and were at an increased risk of having to repeat a grade. Conclusions Childhood cancer has an appreciable impact on the lives of patients and caregivers. The burden is greater for those living far from a treatment center.
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