Friday, January 13, 2012
Adolescents And Young Adults: Bringing A Neglected Group Into Cancer Research – Health Affairs Blog (ages 7-18rs)
“A child is not a small adult,” but an adolescent is not a large child...."
"Consent and Assent in Children and AYA Cancer Patients
For most IRBs, informed consent can be granted by any prospective human subject over the age of 18. For minor patients under 7, consent is granted by the parents or guardians. What to do with patients between the ages of 7 and 18 (or with “intellectual ages” between 7 and 18) is less clear. While they are still minors and under the care of their parents or guardians, they are also independent human beings capable of judgments, particularly ones with which their parents or guardians may not agree. This is certainly the case when it comes to choosing their friends, making time for school work, selecting extracurricular activities, carefully operating a motor vehicle and experimenting with alcohol, drugs or sex....."
Prog Neurol Surg. 2012;25:82-95. Epub 2012 Jan 6.Source
Department of Radiation Oncology, Sunnybrook Health Sciences Centre, Princess Margaret Hospital, University of Toronto, Toronto, Ont., Canada.
AbstractThe purpose of this report was to review the role of whole brain radiotherapy (WBRT) in the management of brain metastases. In particular, we review the role of WBRT as a prophylactic therapy, and the role of surgery and stereotactic radiosurgery (SRS) with respect to WBRT, by discussing the relevant randomized controlled trials. WBRT is associated with toxicities and this may influence the decision to use WBRT and, therefore, we review both the acute side effects of WBRT and the moreserious late side effects of neurocognitive impairment and leukoencephalopathy. As patients are living longer with brain metastases the role of WBRT is moving forward; however, using modern radiation technology we may be able to reduce the morbidity of this therapy. We present an extreme case of re-re-treatment WBRT with hippocampal sparing and simultaneous integrated boosts to multiple lesions as one of the future directions under evaluation.
CONCLUSIONS:The MSH2 P349L may increase the risk for pancreatic cancer beyond the usual mutations in DNA mismatch repair genes; however, studies of additional families with the identical missense alteration are needed to confirm this initial impression.
abstract: Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study
"....Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects.
Conclusion:Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing."
abstract: What do we know about patients' perceptions of continuity of care? A meta-synthesis of qualitative studies
Objective The increasing complexity in healthcare delivery might impede the achievement of continuity of care, being defined as ‘one patient experiencing care over time as coherent and linked’. This article aims to improve the knowledge on patients' perceptions of relational (RC), informational (IC) and management continuity (MC) across care levels.
Results The selected 25 studies most frequently investigated RC. Being attended to regularly and over time by one physician (RC) was valued by chronic ill patients, but balanced with convenient access by young patients (MC). Communication and information transfer across care settings as well as the gathering of holistic information about the patient were perceived to foster IC. Critical features for achieving MC were accessibility between care levels, individualized care and a smooth discharge process including the receipt of support. Patients further considered that their personal involvement was one facilitating element of continuity of care.
Study selection UK studies from 1997 to 2009 which included service user involvement in NHS healthcare services.
Conclusion There is a need for significant development of the PPI (Patient Public Involvement) evidence base particularly around guidance for the reporting of user activity and impact. The evidence base needs to be significantly strengthened to ensure the full impact of involving service users in NHS healthcare services is fully understood.
Australian newspaper reporting of medication errors was relatively limited. Given the high prevalence of errors and the potential role consumers can play in identifying and preventing errors, there is a clear argument for increasing public awareness and understanding of issues relating to medication safety. Existing coverage of this issue is unrelated to research evidence. This suggests the need for patient safety researchers and advocacy groups to engage more strongly with the media as a strategy to increase the productive public discourse concerning medication errors and gain support for evidence-based interventions.
"At the opening of the Dec. 14, 2011 board meeting, board president Deb Mexicotte requested a moment of silence to acknowledge the recent loss of two students. Mariel Almendras, a second grader at Dicken, died of complications related to a rare ovarian cancer."
"One randomized trial is still ongoing — the Prevention of Early Menopause (POEMS), in women with hormone-receptor-negative breast cancer.
In view of the conflicting data, and while mature results from ongoing studies are awaited, the role of this treatment approach remains "uncertain," Dr. Partridge notes in her editorial.
Women...should not rely on GnRH agonist treatment."Given the current level of evidence, women who are interested in future fertility, and the providers who are assisting them in these often difficult decisions, should not rely on GnRH agonist treatment during chemotherapy for preservation of menstrual and ovarian function or fertility," she concludes."
MORE STILL TO LEARN"Another challenge is that although a person's genome doesn't change, its meaning will. As scientists uncover more DNA variants that protect against disease and variants that make it more likely, a genome sequence that meant one thing in 2012 will have a different meaning in 2013, not to mention 2020.
A DNA variant that was once thought to be dangerous "might turn out to be benign if countered by another," says Greely. "Whose responsibility will it be to tell you that, years later?" DNA testing companies offer subscriptions that give customers regular updates like that."
Disability, health groups support individual mandate in Supreme Court Amicus Brief | Healthcare Finance News (insurance)
the professional responses, in general, were not patient-friendly, rather system-friendly which indicates an ongoing disparity between those that give (care) and those that receive (care) and the public reality of the unrecognized, still, costs of healthcare.
- ↵Hospital parking charges. Edinburgh (UK): The Scottish Government; 2008. Available: www.scotland.gov.uk/News/Releases/2008/09/02091611 (accessed 2011 Nov. 2).
- ↵Free hospital parking under way. BBC News 2008 Apr. 1. Available: http://news.bbc.co.uk/2/hi/uk_news/wales/7323027.stm (accessed 2011 Nov. 2).
- ↵Canada Health Act 1985, c. C-6. Available: http://laws.justice.gc.ca/eng/acts/C-6/page-2.html (accessed 2011 Nov. 2).
- ↵Hospital parking charges to stay, government says. BBC News 2010 Sept. 16. Available: www.bbc.co.uk/news/health-11327653 (accessed 2011 Nov. 2).
Responses to this article
- Peter L. Jacobsen
- John F. thornton
- James D. Handelman
- Tom Closson
- Mr. Gordon A. Boyce
- Cristian Toma
- Eric E. BROWN
video: Patient Safety Advocates Talk About the Bureaucracy in Canadian Health Care - Leslie Worthington/Val Lee - Winnipeg
1) video: Sisters Leslie Worthington and Val Lee (Winnipeg)
The Patient Factor.com
2)The Patient Factor: Leslie Worthington "Her Father's Voice"