Investigating the cost-effectiveness of video telephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

Background Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care professionals and accessibility, which is often reduced due to distance, time, cost and transport. The primary aim of this work is to investigate the cost-effectiveness of videotelephony to support regional and remote families returning home for the first time with a child newly diagnosed with cancer Methods/design We will recruit 162 paediatric oncology patients and their families to a single centre randomised controlled trial. Patients from regional and remote areas, classified by Accessibility/Remoteness Index of Australia (ARIA+) greater than 0.2, will be randomised to a videotelephone support intervention or a usual support control group. Metropolitan families (ARIA+ ≤ 0.2) will be recruited as an additional usual support control group. Families allocated to the videotelephone support intervention will have access to usual support plus education, communication, counselling and monitoring with specialist multidisciplinary team members via a videotelephone service for a 12-week period following first discharge home. Families in the usual support control group will receive standard care i.e., specialist multidisciplinary team members provide support either face-to-face during inpatient stays, outpatient clinic visits or home visits, or via telephone for families who live far away from the hospital. The primary outcome measure is parental health related quality of life as measured using the Medical Outcome Survey (MOS) Short Form SF-12 measured at baseline, 4 weeks, 8 weeks and 12 weeks. The secondary outcome measures are: parental informational and emotional support; parental perceived stress, parent reported patient quality of life and parent reported sibling quality of life, parental satisfaction with care, cost of providing improved support, health care utilisation and financial burden for families. Discussion This investigation will establish the feasibility, acceptability and cost-effectiveness of using videotelephony to improve the clinical and psychosocial support provided to regional and remote paediatric oncology patients and their families.

Evidence for u.v. induction of CDKN2 mutations in melanoma cell lines

The CDKN2 gene, encoding the cyclin dependent kinase inhibitor p16, is a tumour suppressor gene involved in melanoma and maps to chromosome band 9p22. Mutations or interstitial deletions of this gene have been found both in the germline of familial melanoma cases and somatically in melanoma cell lines. Previous mutation analyses of melanoma cell lines have indicated a high frequency of C:G to T:A transitions, with all of these mutations occurring at dipyrimidine sites. Including three melanoma cell lines carrying tandem CC to TT mutations, the spectrum of mutations so far reported indicates a possible role for u.v. radiation in the mutagenesis of this gene in some tumours. To further examine this hypothesis we have characterised mutations of the CDKN2 gene in 30 melanoma cell lines. Nineteen lines carried complete or partial homozygous deletions of the gene. Of the remaining cell lines, eight were shown by direct sequencing of PCR products from exon 1 and exon 2 to carry a total of nine different mutations of CDKN2. Two cell lines carried tandem CC to TT mutations and a high rate of C:G to T:A transitions was observed. This study provides further evidence for the role of u.v. light in the genesis of melanoma, with one target being the CDKN2 tumour suppressor gene.

CDKN2A/p16 is inactivated in most melanoma cell lines

The CDKN2A gene maps to chromosome 9p21-22 and is responsible for melanoma susceptibility in some families. Its product, p16, binds specifically to CDK4 and CDK6 in vitro and in vivo, inhibiting their kinase activity. CDKN2A is homozygously deleted or mutated in a large proportion of tumor cell lines and some primary tumors, including melanomas. The aim of this study was to investigate the involvement of CDKN2A and elucidate the mechanisms of p16 inactivation in a panel of 60 cell lines derived from sporadic melanomas. Twenty-six (43%) of the melanoma lines were homozygously deleted for CDKN2A, and an additional 15 (25%) lines carried missense, nonsense, or frameshift mutations. All but one of the latter group were shown by microsatellite analysis to be hemizygous for the region of 9p surrounding CDKN2A. p16 was detected by Western blotting in only five of the cell lines carrying mutations. Immunoprecipitation of p16 in these lines, followed by Western blotting to detect the coprecipitation of CDK4 and CDK6, revealed that p16 was functionally compromised in all cell lines but the one that carried a heterozygous CDKN2A mutation. In the remaining 19 lines that carried wild-type CDKN2A alleles, Western blot analysis and immunoprecipitation indicated that 11 cell lines expressed a wild-type protein. Northern blotting was performed on the remaining eight cell lines and revealed that one cell line carried an aberrantly sized RNA transcript, and two other cell lines failed to express RNA. The promoter was found to be methylated in five cell lines that expressed CDKN2A transcript but not p16. Presumably, the message seen by Northern blotting in these cell lines is the result of cross-hybridization of the total cDNA probe with the exon 1beta transcript. Microsatellite analysis revealed that the majority of these cell lines were hemi/homozygous for the region surrounding CDKN2A, indicating that the wild-type allele had been lost. In the 11 cell lines that expressed functional p16, microsatellite analysis revealed loss of heterozygosity at the markers immediately surrounding CDKN2A in five cases, and the previously characterized R24C mutation of CDK4 was identified in one of the remaining 6 lines. These data indicate that 55 of 60 (92%) melanoma cell lines demonstrated some aberration of CDKN2A or CDK4, thus suggesting that this pathway is a primary genetic target in melanoma development.

Mutations in exon 3 of the beta-catenin gene are rare in melanoma cell lines

Mutations in exon 3 of the CTNNB1 gene encoding beta-catenin have been reported in colorectal cancer cell lines and tumours. Although one study reported mutations or deletions affecting beta-catenin in 20% of melanoma cell lines, subsequent reports detected a much lower frequency of aberrations in uncultured melanomas. To determine whether this difference in mutation frequency reflected an in vitro culturing artefact, exon 3 of CTNNB1 was screened in a panel of 62 melanoma cell lines. In addition, reverse transcription-polymerase chain reaction (RT-PCR) was performed to detect intragenic deletions affecting exon 3. One out of 62 (1.6%) cell lines was found to carry a mutation, indicating that aberration of the Wnt-1/wingless pathway through activation of beta-catenin is a rare event, even in melanoma cell lines.

PTEN inactivation is rare in melanoma tumours but occurs frequently in melanoma cell lines

Deletions detected in cytogenetic and loss of heterozygosity (LOH) studies indicate that at least one tumour suppressor gene maps to the long arm of chromosome 10. Previous deletion mapping studies have observed LOH on 10q in about 30% of melanomas analysed. The PTEN gene, mapping to chromosome band 10q23.3, encodes a protein with both lipid and protein phosphatase activity. Somatic mutations and deletions in have been detected in a variety of cell lines and tumours, including melanoma samples. We performed mutation analyses and extensive allelic loss studies to investigate the role this gene plays in melanoma pathogenesis. We found that a total of 34 out of 57 (60%) melanoma cell lines carried hemizygous deletions of chromosome 10q encompassing the PTEN locus. A further three cell lines carried smaller deletions excluding PTEN. Inactivation of both PTEN alleles by exon-specific homozygous deletion or mutation was observed in 13 out of 57 (23%) melanoma cell lines. The mutation spectrum observed does not indicate an important role for ultraviolet radiation in the genesis of these mutations, and evidence from three cell lines supports the acquisition of PTEN aberrations in culture. Ten out of 49 (20%) matched melanoma tumour/normal samples harboured hemizygous deletions of either the whole chromosome or most of the long arm. Mutations within were detected in only one of the 10 tumours demonstrating LOH at 10q23 that were analysed. These results suggest that PTEN inactivation may be important for the propagation of melanoma cells in culture, and that another chromosome 10 tumour suppressor gene may be important for melanoma pathogenesis.

Library and information science education 2.0 : guiding principles and models of best practice ALTC Fellowship Report

This ALTC Teaching Fellowship aimed to establish Guiding Principles for Library and Information Science Education 2.0. The aim was achieved by (i) identifying the current and anticipated skills and knowledge required by successful library and information science (LIS) professionals in the age of web 2.0 (and beyond), (ii) establishing the current state of LIS education in Australia in supporting the development of librarian 2.0, and in doing so, identify models of best practice. The fellowship has contributed to curriculum renewal in the LIS profession. It has helped to ensure that LIS education in Australia continues to meet the changing skills and knowledge requirements of the profession it supports. It has also provided a vehicle through which LIS professionals and LIS educators may find opportunities for greater collaboration and more open communication. This will help bridge the gap between LIS theory and practice and will foster more authentic engagement between LIS education and other parts of the LIS industry in the education of the next generation of professionals. Through this fellowship the LIS discipline has become a role model for other disciplines who will be facing similar issues in the coming years. Eighty-one members of the Australian LIS profession participated in a series of focus groups exploring the current and anticipated skills and knowledge needed by the LIS professional in the web 2.0 world and beyond. Whilst each focus group tended to draw on specific themes of interest to that particular group of people, there was a great deal of common ground. Eight key themes emerged: technology, learning and education, research or evidence-based practice, communication, collaboration and team work, user focus, business savvy and personal traits. It was acknowledged that the need for successful LIS professionals to possess transferable skills and interpersonal attributes was not new. It was noted however that the speed with which things are changing in the web 2.0 world was having a significant impact and that this faster pace is placing a new and unexpected emphasis on the transferable skills and knowledge. It was also acknowledged that all librarians need to possess these skills, knowledge and attributes and not just the one or two role models who lead the way. The most interesting finding however was that web 2.0, library 2.0 and librarian 2.0 represented a ‘watershed’ for the LIS profession. Almost all the focus groups spoke about how they are seeing and experiencing a culture change in the profession. Librarian 2.0 requires a ‘different mindset or attitude’. The Levels of Perspective model by Daniel Kim provides one lens by which to view this finding. The focus group findings suggest that we are witnessing a re-awaking of the Australian LIS profession as it begins to move towards the higher levels of Kim’s model (ie mental models, vision). Thirty-six LIS educators participated in telephone interviews aimed at exploring the current state of LIS education in supporting the development of librarian 2.0. Skills and knowledge of LIS professionals in a web 2.0 world that were identified and discussed by the LIS educators mirrored those highlighted in the focus group discussions with LIS professionals. Similarly it was noted that librarian 2.0 needed a focus less on skills and knowledge and more on attitude. However, whilst LIS professionals felt that there was a paradigm shift within the profession. LIS educators did not speak with one voice on this matter with quite a number of the educators suggesting that this might be ‘overstating it a bit’. This study provides evidence for “disparate viewpoints” (Hallam, 2007) between LIS educators and LIS professionals that can have a significant implications for the future of not just LIS professional education specifically but for the profession generally. Library and information science education 2.0: guiding principles and models of best practice 1 Inviting the LIS academics to discuss how their teaching and learning activities support the development of librarian 2.0 was a core part of the interviews conducted. The strategies used and the challenges faced by LIS educators in developing their teaching and learning approaches to support the formation of librarian 2.0 are identified and discussed. A core part of the fellowship was the identification of best practice examples on how LIS educators were developing librarian 2.0. Twelve best practice examples were identified. Each educator was recorded discussing his or her approach to teaching and learning. Videos of these interviews are available via the Fellowship blog at .The LIS educators involved in making the videos felt uncomfortable with the term ‘best practice’. Many acknowledged that there simply seeking to do the best by their students and that there was always room for improvement. For this reason these videos are offered as examples of “great practice”. The videos are a tool for other educators to use, regardless of discipline, in developing their teaching and learning approaches to supporting web 2.0 professionals. It has been argued that the main purpose of professional education is transformation (Dall’ Alba, 2009; Dall’Alba & Barnacle, 2007). As such professional education should focus not just on skills and knowledge acquisition but also on helping students to develop ways of being the professionals in question (ie LIS professionals, teachers, lawyers, engineers).The aim of this fellowship was to establish Guidelines for Library and Information Science Education 2.0 it has however become apparent that at this point in time it is not yet possible to fulfil this aim. The fellowship has clearly identified skills and knowledge needed by the LIS professional in web 2.0 world (and beyond). It has also identified examples of ‘great practice’ by LIS educators as they endeavour to develop LIS professionals who will be successful in a web 20 world. The fellowship however has also shown that the LIS profession is currently undergoing significant attitudinal and conceptual change. Consequently, before a philosophy of LIS education 2.0 can be expressed, the Australian LIS profession must first explore and articulate what it means to be an LIS professional in the 21st century (ie a world of web 2.0 and beyond). In short, the LIS profession in Australia must take stock not of “what we know and can do” but on “who we are becoming” (Dall’Alba, 2009, p 34).

The role of idea novelty and relatedness in nascent ventures

The study of venture idea characteristics and the contextual fit between venture ideas and individuals are key research goals in entrepreneurship (Davidsson, 2004). However, to date there has been limited scholarly attention given to these phenomena. Accordingly, this study aims to help fill the gap by investigating the importance of novelty and relatedness of venture ideas in entrepreneurial firms. On the premise that new venture creation is a process and that research should be focused on the early stages of the venturing process, this study primarily focuses its attention on examining how venture idea novelty and relatedness affect the performance in the venture creation process. Different types and degrees of novelty are considered here. Relatedness is shown to be based on individuals’ prior knowledge and resource endowment. Performance in the venture creation process is evaluated according to four possible outcomes: making progress, getting operational, being terminated and achieving positive cash flow. A theoretical model is developed demonstrating the relationship between these variables along with the investment of time and money. Several hypotheses are developed to be tested. Among them, it is hypothesised that novelty hinders short term performance in the venture creation process. On the other hand knowledge and resource relatedness are hypothesised to promote performance. An experimental study was required in order to understand how different types and degrees of novelty and relatedness of venture ideas affect the attractiveness of venture ideas in the eyes of experienced entrepreneurs. Thus, the empirical work in this thesis was based on two separate studies. In the first one, a conjoint analysis experiment was conducted on 32 experienced entrepreneurs in order to ascertain attitudinal preferences regarding venture idea attractiveness based on novelty, relatedness and potential financial gains. This helped to estimate utility values for different levels of different attributes of venture ideas and their relative importance in the attractiveness. The second study was a longitudinal investigation of how venture idea novelty and relatedness affect the performance in the venture creation process. The data for this study is from the Comprehensive Australian Study for Entrepreneurial Emergence (CAUSEE) project that has been established in order to explore the new venture creation process in Australia. CAUSEE collects data from a representative sample of over 30,000 households in Australia using random digit dialling (RDD) telephone interviews. From these cases, data was collected at two points in time during a 12 month period from 493 firms, who are currently involved in the start-up process. Hypotheses were tested and inferences were derived through descriptive statistics, confirmatory factor analysis and structural equation modelling. Results of study 1 indicate that venture idea characteristics have a role in the attractiveness and entrepreneurs prefer to introduce a moderate degree of novelty across all types of venture ideas concerned. Knowledge relatedness is demonstrated to be a more significant factor in attractiveness than resource relatedness. Results of study 2 show that the novelty hinders nascent venture performance. On the other hand, resource relatedness has a positive impact on performance unlike knowledge relatedness which has none. The results of these studies have important implications for potential entrepreneurs, investors, researchers, consultants etc. by developing a better understanding in the venture creation process and its success factors in terms of both theory and practice.

The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

Extending client-centered support : counselors’ proposals to shift from email to telephone counseling

The availability and use of online counseling approaches has increased rapidly over the last decade. While research has suggested a range of potential affordances and limitations of online counseling modalities, very few studies have offered detailed examinations of how counselors and clients manage asynchronous email counseling exchanges. In this paper we examine email exchanges involving clients and counselors through Kids Helpline, a national Australian counseling service that offers free online, email and telephone counseling for young people up to the age of 25. We employ tools from the traditions of ethnomethodology and conversation analysis to analyze the ways in which counselors from Kids Helpline request that their clients call them, and hence change the modality of their counseling relationship, from email to telephone counseling. This paper shows the counselors’ three multi-layered approaches in these emails as they negotiate the potentially delicate task of requesting and persuading a client to change the trajectory of their counseling relationship from text to talk without placing that relationship in jeopardy.

Address terms in turn beginnings: Managing disalignment and disaffiliation in telephone counselling

This paper examines use of address terms by counsellors on a telephone counselling service for children and young people. Drawing on conversation analytic findings and methods, we show how personal names are used in the management of structural and interpersonal aspects of counselling interaction. Focusing on address terms in turn-beginnings - where a name is used as, or as part of, a preface - the analysis shows that address terms are used in turns that are not fitted with prior talk in terms of either the activity or affective stance of the client. We discuss two environments in which this practice is observed: in beginning turns that initiate a new action sequence, and in turns that challenge the client’s position. Our focus is on the use of client names in the context of producing disaligning or disaffiliative actions. In disaligned actions, counsellors produced sequentially disjunctive turns that regularly involved a return to a counselling agenda. In disaffiliative actions counsellors presented a stance that did not fit with the affective stance of the client in the prior turn, for instance, in disagreeing with or complimenting the client. The paper discusses how such turns invoke a counselling agenda and how name use is used in the management of rapport and trust in counselling interaction.