Abandoning clinical trial safeguards won’t boost local industry

Testing new drugs in clinical trials is a billion-dollar industry in Australia, with most of the money coming from international pharmaceutical companies. But as investment grows in India, China, and other emerging competitors, some people argue we need to make Australia more attractive to such investment. One of their solutions is to water down the ethics approval process

GIS and Genetic Diversity- Case Studies in Stylosanthes

We present a new technique for mapping the potential occurrence of wild germplasm based in climate data and show its application to six important Stylosanthes species. The method can be used to develop hypotheses as to the distribution for purposes of collection and/or in situ conservation. It can also be used to investigate genetic diversity with a species. We present some first results based in isozyme data from S. guianensis

Parents as Advocates for the Psychosocial Survival of Adolescents and Young Adults with Cancer

Many young people with cancer have a parent or parents who care for them during their hospitalisation and treatment, and remain an important part of their lives after the ‘crisis’ has passed and young people have moved into survivorship. This qualitative study explored the impact of cancer diagnosis, treatment and survival during adolescence and young adulthood on the practice and experiences of parenting. We conducted focus groups with a total of 22 parents of young people diagnosed with various cancers between the ages of 11 and 19 years old. The results indicated that parents advocated for their offspring in different ways at different points of the cancer journey. Parents used their parental knowledge of their offspring to secure a medical diagnosis and treatment, developed medical knowledge to advocate for appropriate treatment within the medical system, and then used parental and medical knowledge to advocate for their offspring’s successful psychosocial survival. In this final point in the journey, parents entered social worlds from which they would normally be absent and some went to great lengths to ensure their offspring were not socially disadvantaged. Key Words: Adolescent, Young Adult, Parent, CancerAustralian Research Council's Linkage Projects funding scheme (project number LP0883632

The long haul: Caring for bone marrow transplant patients in regional Australia

Objective To evaluate the experience of, and services to, patients from rural and regional Australia referred to a large urban tertiary referral hospital for allogeneic haematopoietic cell transplantation (allo‑HCT) and to compare their quality of life with similar populations. Design and setting A cross‑sectional survey of allo‑HCT recipients referred from the Calvary Mater Newcastle to Westmead Hospital, Sydney, NSW. Subjects Thirty‑seven of forty adult survivors of allo‑HCT (92.5%) who underwent transplant between 1999 and 2008 and were at least three months post transplant. Intervention All subjects completed a validated measure of quality‑of‑life (QoL) in bone marrow transplant recipients ( FACT‑BMT Version 4) and the Regional/Rural BMT Needs Assessment Survey. Results Most patients (79%) were between one and five years post transplant. Almost all reported having been sufficiently prepared for transplant and received most information and support from the Nurse Coordinator. Despite the fact that 89% of patients reported significant adverse effects of allo‑HCT, >60% still reported an acceptable quality of life. Importantly, however, about a third of patients experienced financial difficulties associated with transplantation and felt pressure to return to work. Conclusion Patients referred for allo‑HCT should be advised about the arduousness of transplant but also reassured that most survivors will experience acceptable levels of functioning and QoL one to two years after transplant. With sufficient local support and with appropriate nursing care and coordination the experiences of regional/rural patients is comparable with other allo‑HCT patient populations. Further investigation into vocational rehabilitation is warranted due to the significant financial and occupational pressures reported by survivors of allo‑HC

The long haul: Caring for bone marrow transplant patients in regional Australia

Objective To evaluate the experience of, and services to, patients from rural and regional Australia referred to a large urban tertiary referral hospital for allogeneic haematopoietic cell transplantation (allo‑HCT) and to compare their quality of life with similar populations. Design and setting A cross‑sectional survey of allo‑HCT recipients referred from the Calvary Mater Newcastle to Westmead Hospital, Sydney, NSW. Subjects Thirty‑seven of forty adult survivors of allo‑HCT (92.5%) who underwent transplant between 1999 and 2008 and were at least three months post transplant. Intervention All subjects completed a validated measure of quality‑of‑life (QoL) in bone marrow transplant recipients ( FACT‑BMT Version 4) and the Regional/Rural BMT Needs Assessment Survey. Results Most patients (79%) were between one and five years post transplant. Almost all reported having been sufficiently prepared for transplant and received most information and support from the Nurse Coordinator. Despite the fact that 89% of patients reported significant adverse effects of allo‑HCT, >60% still reported an acceptable quality of life. Importantly, however, about a third of patients experienced financial difficulties associated with transplantation and felt pressure to return to work. Conclusion Patients referred for allo‑HCT should be advised about the arduousness of transplant but also reassured that most survivors will experience acceptable levels of functioning and QoL one to two years after transplant. With sufficient local support and with appropriate nursing care and coordination the experiences of regional/rural patients is comparable with other allo‑HCT patient populations. Further investigation into vocational rehabilitation is warranted due to the significant financial and occupational pressures reported by survivors of allo‑HC

The perils of a vanishing cohort: A study of social comparisons by women with advanced ovarian cancer

Objective: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. Methods: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi-structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. Results: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of “normal” others, for normalizing information and information that facilitated upward identifications. Conclusions: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis – in particular their status as a member of a “vanishing cohort” – and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. Practice implications: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease. KEYWORDS Cancer; Oncology; Ovarian neoplasms; Social comparison theory; Social support; Self-help groupsNational Health & Medical Research Council Project Grant 40260

Racially-conditional donation: The example of umbilical cord blood

While direction of donated tissue to family members has long been accepted, direction to members of specific racial groups has been opposed, on the basis that it is discriminatory and contrary to the ethos the institution of organ donation seeks to promote. It has, however, recently been proposed that racially conditional donation may provide a useful--and ethically acceptable--way to address the social inequalities and injustices experienced by certain cultural groups. This article examines the ethical, legal and cultural arguments for and against racially conditional donation, concluding that the practice is more likely to undermine the values of equity and justice than to promote them and that it may also lead to other unfavourable personal and social outcomes

Racially-conditional donation: The example of umbilical cord blood

While direction of donated tissue to family members has long been accepted, direction to members of specific racial groups has been opposed, on the basis that it is discriminatory and contrary to the ethos the institution of organ donation seeks to promote. It has, however, recently been proposed that racially conditional donation may provide a useful--and ethically acceptable--way to address the social inequalities and injustices experienced by certain cultural groups. This article examines the ethical, legal and cultural arguments for and against racially conditional donation, concluding that the practice is more likely to undermine the values of equity and justice than to promote them and that it may also lead to other unfavourable personal and social outcomes

Beyond evidence: reappraising use of CA-125 as post-therapy surveillance for ovarian cancer

omen who have completed primary chemotherapy for ovarian cancer commonly have serial assessment of the serum tumour marker cancer antigen 125 (CA-125).1 This practice has been based on the proven utility of CA-125 in diagnostic algorithms and as a marker of response to therapy. Serial CA-125 assessment is also used because there is evidence that in women who have completed treatment for ovarian cancer, the serum CA-125 rises 2–6 months before symptoms or signs of relapse develop. The assumption underlying this and other similar studies is that serial monitoring of CA-125 would enable early diagnosis and treatment of relapse. This would thus lead to delay or reduction of cancer-related symptoms, psychological reassurance and, in theory, improved survival. Some studies have suggested that CA-125 may have some benefit in post-treatment surveillance. However, many others have demonstrated that although a rising CA-125 level is highly predictive of relapse, surveillance monitoring of CA-125 levels after remission from primary chemotherapy confers little benefit over standard clinical examination and does not improve duration of survival or quality of life

Cancergazing? CA125 and post-treatment surveillance in advanced ovarian cancer.

Post-treatment surveillance of advanced ovarian cancer involves regular testing of asymptomatic patients using the CA125 test. This practice is based on a rationale that is not supported by evidence from clinical trials. This paper aims to stimulate critical reflection concerning the effect of investigative tests on clinical decisions and interactions, and the experience of illness, particularly in the context of advanced malignant disease. Drawing on the idea of the “medical gaze”, and building on previous health communication research, we present an analysis of in-depth interviews and psychometric tests collected in a prospective study of 20 Australian women with advanced ovarian cancer conducted between 2006 and 2009. We describe the demands placed on patients by the use of the CA125 test, some hazards it creates for decision-making, and some of the test’s subjective benefits. It is widely believed that the CA125 test generates anxiety among patients, and the proposed solution is to educate women more about the test. We found no evidence that anxiety was a problem requiring a response over and above existing services. We conclude that the current debate is simplistic and limited. Focussing on patient anxiety does not account for other important effects of post-treatment surveillance, and educating patients about the test is unlikely to mitigate anxiety because testing is part of a wider process by which patients become aware of a disease that – once it has relapsed – will certainly kill them in the near future.National Health and Medical Research Council Project Grant number 40260