Survey of practices and policies relating to the use of complementary and alternative medicines and therapies in New South Wales cancer services.

AIMS: To examine policies and practices relating to the provision, prescription and monitoring of complementary and alternative medicine and therapies (CAM) in conventional cancer services in NSW. METHODS: Self-administered questionnaire sent to directors of all 65 eligible cancer services in NSW in 2009. RESULTS: Forty-three services responded to the survey (response rate 66%). Only six (14%) services reported having formal policies about CAM. Most (n = 33, 77%) expected that patients would be asked about CAM use during their initial assessment. Eight services (19%) provided and/or prescribed CAM for patients, and most of these (n = 7) recorded details of CAM use in patients' records. Only four (9%) services permitted CAM practitioners from the community to attend inpatients, whereas 24 (56%) permitted inpatients to bring in their own CAM. Most of these services (n = 17) required medical approval for the use of CAM. Of the latter, most (n = 13) recorded the use of approved CAM, but only seven recorded use of unapproved CAM and only three refused permission to continue use of unapproved CAM. CONCLUSION: Most cancer services in NSW recognise potential CAM use by patients and expect medical staff to ask patients about their use of CAM. While few cancer services provided or prescribed CAM, over half permitted inpatients to bring their own CAM into hospital. There was little control over the use of CAM, however, and monitoring was lax. Given the wide usage of CAM by patients with cancer, this lack of control may compromise clinical outcomes, with potentially dangerous consequences.

Direct-to-consumer personal genome testing: ethical and regulatory issues that arise from wanting to 'know' your DNA.

Direct-to-consumer personal genome testing (DTC-PGT) screens a customer's genome for the presence of single nucleotide polymorphisms that are reported to be associated with various diseases, disease risk factors and personal characteristics. The range of health risks covered by personal genome testing (PGT) includes cancer, heart disease, obesity, diabetes mellitus and osteoporosis. PGT also detects a range of other characteristics, such as alcohol 'flush reaction', eye colour, ear wax type and bitter taste perception. Information about ancestry and family history is also available. Although DTC-PGT is still a relatively new enterprise, the technology has the potential for rapid expansion as it becomes more accessible to consumers who wish to obtain information about their genetic profile. This review provides an overview of the broader ethical and regulatory issues raised by personal genome tests that are marketed directly to the public, and that purport to provide information about health risks. We discuss the emergence of DTC-PGT in Australia, and the possible regulatory responses that may be taken to manage it.

Patient and family education in HSCT: improving awareness of respiratory virus infection and influenza vaccination. A descriptive study and brief intervention.

To prevent respiratory virus (RV) infection after hematopoietic SCT (HSCT), patient and household members are advised to have annual influenza vaccinations and avoid symptomatic contacts. The object of this study was to measure and increase patient/household awareness of RV infection and preventive measures. We used a self-administered questionnaire before/after a 5-min educational module (2006-2007) and interviews with HSCT patients (2005-2007). The subjects were patients and their households attending pre-HSCT education in an Australian HSCT Unit. Outcome measures were awareness of RV infection post-HSCT and effective prevention strategies; household influenza vaccination on admission for HSCT. In all, 139 out of 205 (68%) participants completed both questionnaires. Baseline knowledge of RV infection risk was high; knowledge of prevention was low. Intervention increased awareness that influenza post-HSCT could be fatal or require intensive care (68-87%, P=0.003), knowledge of effective prevention strategies (41-78%, P<0.0001) including vaccination (11-58%, P<0.0001), and belief among family/friends (but not patients) that household vaccination reduces influenza risk post-HSCT (57-97%, P<0.0001 and 76-81%, P=0.2, respectively). Household vaccination at HSCT admission was 71% for attenders and 30% for non-participants (RR 2.38, 95% confidence interval (CI) 1.49-3.80, P<0.0001). We concluded that patient and family pre-HSCT education increases awareness of RV prevention strategies and household influenza vaccination.

Evaluation of leaf water status by means of permittivity at terahertz frequencies.

We present an electromagnetic model of plant leaves which describes their permittivity at terahertz frequencies. The complex permittivity is investigated as a function of the water content of the leaf. Our measurements on coffee leaves (Coffea arabica L.) demonstrate that the dielectric material parameters can be employed to determine the leaf water status and, therefore, to monitor drought stress in plant leaves. The electromagnetic model consists of an effective medium theory, which is implemented by a third order extension of the Landau, Lifshitz, Looyenga model. The influence of scattering becomes important at higher frequencies and is modeled by a Rayleigh roughness factor.

Establishing the role of pre-implantation genetic diagnosis with human leucocyte antigen typing: what place do "saviour siblings" have in paediatric transplantation?

BACKGROUND: Not all children in need of a haematopoietic stem cell transplant have a suitable relative or unrelated donor available. Recently, in vitro fertilisation (IVF) with pre-implantation genetic diagnosis (PGD) for human leucocyte antigen (HLA) tissue typing has been used to selectively transfer an IVF embryo in order to produce a child who may provide umbilical cord blood for transplantation to an ill sibling. Such children are sometimes called "saviour siblings". OBJECTIVE: To examine the published clinical and epidemiological evidence relevant to the use of this technology, with the aim of clarifying those situations where IVF and PGD for HLA typing should be discussed with parents of an ill child. DESIGN: A critical analysis of published literature on comparative studies of umbilical cord blood versus other sources of stem cells for transplantation; comparative studies of matched unrelated donor versus matched related donor transplantation; and the likelihood of finding an unrelated stem cell donor. CONCLUSION: IVF and PGD for HLA typing is only applicable when transplantation is non-urgent and parents are of reproductive age. Discussions regarding this technology may be appropriate where no suitable related or unrelated donor is available for a child requiring a transplant, or where no suitable related donor is available and transplantation is only likely to be entertained with a matched sibling donor. Discussion may also be considered in the management of any child lacking a matched related donor who requires a non-urgent transplant or may require a transplant in the future.

Informed consent and medical ordeal: a qualitative study.

BACKGROUND: Informed consent is a mainstay of clinical practice, with both moral and legal forces. Material disclosure about extreme treatments, however, is unlikely to convey the full impact of the experience of treatment. Informed consent may be flawed under such circumstances. The aims of this study were to compare expressed satisfaction with pretreatment information to satisfaction after experiencing autologous stem cell transplantation for recurrent lymphoma. METHODS: A qualitative, narrative-based cohort study was conducted in a bone-marrow transplant unit of a teaching hospital at Westmead Hospital, Sydney, Australia. The cohort consisted of 10 transplant recipients and 9 of their nominated lay carers. The outcome measure was satisfaction expressed in narrative interviews at the time of transplantation and 3 months later. We used discourse-analytic techniques to examine the narratives. RESULTS: Both patients and carers expressed high satisfaction with the information given by individual clinicians and by speakers at a formal Information Day held before transplantation. At the first interview, neither patients nor carers commented much on the forthcoming ordeal of chemotherapy and bone marrow ablation, although all patients had undergone previous chemotherapy. At the second interview, the ordeal dominated the narratives and retrospective dissatisfaction with information was common. CONCLUSION: This study suggests that information about treatment theories and protocols can be satisfactorily communicated, but personal experience of suffering defies communication. This finding has serious implications for the practices involved in obtaining informed consent and for the very notion of informed consent.

Direct-to-consumer advertising under the radar: the need for realistic drugs policy in Australia.

Direct-to-consumer advertising of prescription medicines (DTCA-PM) is currently banned in Australia. DTCA-PM is thought to increase health-care costs by increasing demand for drugs that are both expensive and potentially harmful. However, DTCA-PM is occurring in Australia despite the current prohibition. We argue that successful regulation of the practice has been undermined as a result of changes brought about by the ongoing communications revolution, the increasing centrality of patient choice in medical decision-making and the impossibility of drawing and maintaining a sharp distinction between information and advertising. The prohibition is further threatened by recent international trade agreements. These factors make DTCA-PM inevitable and legislative and professional bodies need to acknowledge this to create a more effective health-care policy.

'Right' way to 'do' illness? Thinking critically about positive thinking.

Exhortations to 'be positive' accompany many situations in life, either as a general injunction or in difficult situations where people are facing pressure or adversity. It is particularly evident in health care, where positive thinking has become an aspect of the way people are expected to 'do' illness in developed society. Positive thinking is framed both as a moral injunction and as a central belief system. It is thought to help patients cope emotionally with illness and to provide a biological benefit. Yet, the meanings, expectations and outcomes of positive thinking are infrequently questioned and the risks of positive thinking are rarely examined. We outline some of the latter and suggest that health professionals should exercise caution in both 'prescribing' positive thinking and in responding to patients and carers whose belief systems and feelings of obligation rest on it.

From advance directives to advance care planning: current legal status, ethical rationales and a new research agenda.

This paper uses a case example to review the current legal status of advance directives, as well as their ethical rationale. We draw attention to ongoing efforts to institutionalize advance directives, and to some of the tractable and intractable reasons why advance directives are ineffective. We then introduce the concept of advance care planning, and argue that we should not assume that advance care directives have a place in this process. We conclude by offering three reasons why this assumption may operate, and by suggesting that contingency and uncertainty may sometimes overwhelm all rational approaches to medical care.

Life disruption and generic complexity: a social linguistic analysis of narratives of cancer illness.

This paper draws on social linguistics to inquire into the meaning and function of complexity in illness narratives. According to social linguists, five different story-type genres occur in spoken English. These are illustrated and differentiated using examples drawn from 10 interviews with people who have undergone colectomy for colorectal cancer. In order to test a hypothesis that complexity in illness narratives is related to life disruption, the 10 accounts were ranked in terms of their generic complexity. Measures of life disruption were based on rankings furnished independently by two readers from different disciplines who were blind to the hypothesis being tested. These two rankings showed a high level of agreement (r(s) = 0.85, p<0.01). When the two life disruption rankings and the generic complexity ranking were compared, a high degree of concordance between the three rankings was observed (W = 0.91, p<0.01). No evidence was found of associations between generic complexity and gender, interviewer, surgical outcome in terms of stoma (p>0.05), age (p>0.7) nor time since diagnosis (p>0.1). We conclude that in this study, generic complexity was strongly and significantly related to life disruption. To explain the function of complexity in interaction, we characterise the illness narrative as a genre in its own right, and argue that illness narratives need to be considered both in terms of the work they do both on the listener and for the narrator. In the former case, complexity opens up a discursive space for the dynamic positioning of the interlocutor. In the latter case, we propose that complexity reflects the degree to which the process of re-ordering life by assigning meaning is occurring as the interaction unfolds. In both cases, complex narratives can thus be understood as "hard working" narratives.

Liminality: a major category of the experience of cancer illness.

Narrative analysis is well established as a means of examining the subjective experience of those who suffer chronic illness and cancer. In a study of perceptions of the outcomes of treatment of cancer of the colon, we have been struck by the consistency with which patients record three particular observations of their subjective experience: (1) the immediate impact of the cancer diagnosis and a persisting identification as a cancer patient, regardless of the time since treatment and of the presence or absence of persistent or recurrent disease; (2) a state of variable alienation from social familiars, expressed as an inability to communicate the nature of the experience of the illness, its diagnosis and treatment; and (3) a persistent sense of boundedness, an awareness of limits to space, empowerment and available time. These subjectivities were experienced in varying degree by all patients in our study. Individual responses to these experiences were complex and variable. The experiences are best understood under the rubric of a category we call "liminality". We believe that all cancer patients enter and experience liminality as a process which begins with the first manifestations of their malignancy. An initial acute phase of liminality is marked by disorientation, a sense of loss and of loss of control, and a sense of uncertainty. An adaptive, enduring phase of suspended liminality supervenes, in which each patient constructs and reconstructs meaning for their experience by means of narrative. This phase persists, probably for the rest of the cancer patient's life. The experience of liminality is firmly grounded in the changing and experiencing body that houses both the disease and the self. Insights into the nature of the experience can be gained from the Existentialist philosophers and from the history of attitudes to death. Understanding liminality helps us to understand what it is that patients with cancer (and other serious illnesses) seek from the system to which they turn for help. Its explication should therefore be important for those who provide health care, those who educate health care workers and those concerned to study and use outcomes as administrative and policy making instruments.

Use of systematic reviews of randomised trials by Australian neonatologists and obstetricians.

OBJECTIVE: To determine what proportion of Australian neonatologists and obstetricians report using systematic reviews of randomised trials. DESIGN: Cross-sectional survey using structured telephone interviews. SETTING: Australian clinical practice in 1995. PARTICIPANTS: 103 of the 104 neonatologists in Australia (defined as clinicians holding a position in a neonatal intensive care unit); a random sample of 145 members of the Royal Australian College of Obstetricians and Gynaecologists currently practising in Australia. MAIN OUTCOME MEASURES: Information sources used in clinical practice; reported awareness of, access to and use of systematic reviews, and consequent practice changes. RESULTS: Response rates were 95% (neonatologists) and 87% (obstetricians); 71 neonatologists (72%) and 55 obstetricians (44%) reported using systematic reviews, primarily for individual patient care. Databases of systematic reviews were used with a median frequency of once per month. Among neonatologists, systematic reviews were used more commonly by those who were familiar with computers, attended professional meetings, and had authored research papers. Among obstetricians, they were used more commonly by those who were familiar with computers, had less than 10 years' clinical experience, attended more deliveries, and were full-time staff specialists in public hospitals. Of neonatologists who reported using systematic reviews, 58% attributed some practice change to this use. For obstetricians, the corresponding figure was 80%. CONCLUSIONS: There is evidence that Australian neonatologists and obstetricians use systematic reviews and modify their practice accordingly. Dissemination efforts can benefit from knowledge of factors that predict use of systematic reviews.

Multiplying health gains: the critical role of capacity-building within health promotion programs.

Health outcomes in populations are the product of three factors: (1) the size of effect of the intervention; (2) the reach or penetration of an intervention into a population and (3) the sustainability of the effect. The last factor is crucial. In recent years, many health promotion workers have moved the focus of their efforts away from the immediate population group or environment of interest towards making other health workers and other organisations responsible for, and more capable of, conducting health promotion programs, maintaining those programs and initiating others. 'Capacity-building' by health promotion workers to enhance the capacity of the system to prolong and multiply health effects thus represents a 'value added' dimension to the health outcomes offered by any particular health promotion program. The value of this activity will become apparent in the long term, with methods to detect multiple types of health outcomes. But in the short term its value will be difficult to assess unless we devise specific measures to detect it. At present the term 'capacity-building' is conceptualised and assessed in different ways in the health promotion literature. Development of reliable indicators of capacity-building which could be used both in program planning and in program evaluation will need to take this into account. Such work will provide health-decision makers with information about program potential at the conclusion of the funding period, which could be factored into resource allocation decisions, in addition to the usual information about a program's impact on health outcomes. By program potential, we mean ability to reap greater and wider health gains.

Cell wall turnover in growing and nongrowing cultures of Bacillus subtilis.

Cell wall turnover was studied in cultures of Bacillus subtilis in which growth was inhibited by nutrient starvation or by the addition of antibiotics. Concomitantly, the synthesis of wall, as measured by the incorporation of radioactively labeled N-acetylglucosamine, was followed in some of these cultures. In potassium- or phosphate-starved cultures, growth stopped, but wall turnover continued at a rate slightly lower than that in the control cultures. Lysis of cells did not occur. In glucose-starved cultures, continued wall turnover caused lysis of cells, since wall synthesis apparently was inhibited. The same phenomenon was observed after growth arrest by the addition of wall synthesis inhibitors such as fosfomycin, cycloserine, penicillin G, and vancomycin. Growth arrest by the addition of chloramphenicol allowed the continuation of wall synthesis; therefore, the observed turnover generally did not cause cell lysis.