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Best M.,University of Sydney | Aldridge L.,University of Sydney | Butow P.,University of Sydney | Olver I.,Cancer Council Australia | And 2 more authors.
Palliative and Supportive Care | Year: 2015

Objective: An important goal of cancer medicine is relief of patients' suffering. In view of the clinical challenges of identifying suffering patients, we sought to identify valid instruments for assessing the spiritual suffering of people diagnosed with cancer. Method: A systematic review of the literature was conducted in the Medline, Embase, the Cochrane Library, and PsycINFO databases seeking assessment instruments that measure either suffering or one of its synonyms or symptoms. The psychometric properties of the identified measures were compared. Results: A total of 90 articles were identified that supplied information about 58 measures. The constructs examined were: suffering, hopelessness/demoralization, hope, meaning, spiritual well-being, quality of life where a spiritual/existential dimension was included, distress in the palliative care setting and pain, distress or struggle of a spiritual nature. The Pictorial Representation of Illness and Self Measure (PRISM) (patient completed) was the most promising measure identified for measuring the burden of suffering caused by illness due to its ease of use and the inclusion of a subjective component. Significance of Results: Although the appropriateness of any measure for the assessment of spiritual suffering in cancer patients will depend on the context in which it is intended to be utilized, the PRISM is promising for measuring the burden of suffering due to illness. Copyright © Cambridge University Press 2014. Source


Buckley E.S.,University of South Australia | Webster F.,Cancer Australia | Hiller J.E.,Australian Catholic University | Hiller J.E.,University of Adelaide | And 2 more authors.
European Journal of Surgical Oncology | Year: 2014

Background The natural history of lobular carcinoma in-situ (LCIS) suggests that women are at increased risk of subsequent invasive breast cancer. Questions of effective management for women with this lesion have led to the need for evidence-based guidance and, in particular, guidance regarding management after LCIS is found at core needle biopsy (CNB). Methods A systematic review was conducted to determine the most appropriate management for women with LCIS found at CNB. A comprehensive search of the scientific literature was conducted to identify the literature pertaining to this population. Critical appraisal of the literature, data extraction and a narrative synthesis of the results were conducted. The outcome of interest was upgrade of diagnosis to invasive breast cancer or ductal carcinoma in-situ (DCIS). Results Sparse data, with limited generalisability and considerable uncertainty, are available for women with LCIS at CNB. Nine studies were identified that met pre-specified inclusion criteria. The reported estimates of upgrade of diagnosis from LCIS to invasive breast cancer or DCIS ranged from 2% to 25%. The body of evidence was limited by its retrospective nature, risk of selection bias and poor generalisability to all women with LCIS at CNB. Further, higher quality research is required to determine the best approach for women with LCIS at CNB with any certainty. © 2013 Elsevier Ltd. All rights reserved. Source


Morrell S.,University of Sydney | Morrell S.,Cancer Institute NSW | Taylor R.,University of Sydney | Roder D.,Cancer Australia | And 2 more authors.
Journal of Medical Screening | Year: 2012

Background Evidence that mammography screening reduces breast cancer mortality derives from trials, with observational studies broadly supporting trial findings. The purpose of this study was to evaluate the national mammographic screening programme, BreastScreen Australia, using aggregate screening and breast cancer mortality data. Methods Breast cancer mortality from 1990 to 2004 in the whole Australian population was assessed in relation to screening exposure in the target of women aged 50-69 years. Population cohorts were defined by year of screening (and diagnosis), five-year age group at screening (and diagnosis), and local area of residence at screening (and diagnosis). Biennial screening data for BreastScreen Australia were related to cumulated mortality from breast cancer in an event analysis using Poisson regression, and in a time-to-event analysis using Cox proportional hazards regression. Results were adjusted for repeated measures and the potential effects of mammography outside BreastScreen Australia, regionality, and area socio-economic status. Results From the adjusted Poisson regression model, a 22% (95% CI:12-31%) reduction in six-year cumulated mortality from breast cancer was predicted for screening participation of approximately 60%, compared with no screening; 21% (95% CI:11-30%) for the most recently reported screening participation of 56%; and 25% (95% CI:15-35%) for the programme target of 70% biennial screening participation. Corresponding estimates from the Cox proportional hazard regression model were 30% (95% CI:17-41%), 28% (95% CI:16-38%) and 34% (95% CI:20-46%). Conclusions Despite data limitations, the results of this nationwide study are consistent with the trial evidence, and with results of other service studies of mammography screening. With sufficient participation, mammography screening substantially reduces mortality from breast cancer. Source


Dear R.F.,University of Sydney | Barratt A.L.,University of Sydney | Crossing S.,Cancer Voices NSW and Breast Cancer Action Group NSW | Butow P.N.,University of Sydney | And 2 more authors.
Health Research Policy and Systems | Year: 2011

Background: The Australian Cancer Trials website (ACTO) was publicly launched in 2010 to help people search for cancer clinical trials recruiting in Australia, provide information about clinical trials and assist with doctor-patient communication about trials. We describe consumer involvement in the design and development of ACTO and report our preliminary patient evaluation of the website.Methods: Consumers, led by Cancer Voices NSW, provided the impetus to develop the website. Consumer representative groups were consulted by the research team during the design and development of ACTO which combines a search engine, trial details, general information about trial participation and question prompt lists. Website use was analysed. A patient evaluation questionnaire was completed at one hospital, one week after exposure to the website.Results: ACTO's main features and content reflect consumer input. In February 2011, it covered 1, 042 cancer trials. Since ACTO's public launch in November 2010, until the end of February 2011, the website has had 2, 549 new visits and generated 17, 833 page views. In a sub-study of 47 patient users, 89% found the website helpful for learning about clinical trials and all respondents thought patients should have access to ACTO.Conclusions: The development of ACTO is an example of consumers working with doctors, researchers and policy makers to improve the information available to people whose lives are affected by cancer and to help them participate in their treatment decisions, including consideration of clinical trial enrolment. Consumer input has ensured that the website is informative, targets consumer priorities and is user-friendly. ACTO serves as a model for other health conditions. © 2011 Dear et al; licensee BioMed Central Ltd. Source


Roder D.,Cancer Australia | Roder D.,University of South Australia
Cancer Forum | Year: 2012

Age-standardised breast cancer mortality fell by around 26% in Australian females in the 15 years following introduction of the BreastScreen Australia program. The relative contributions of breast screening and treatment advances to this reduction are open to debate. Three evaluations of breast screening in Australia point to reductions in breast cancer mortality in screening participants consistent with the collective trial results, estimated to be around 35% by an expert panel of the International Agency for Research on Cancer. The collective results of evaluations in other countries are similar but individual results vary widely, from little or no benefit to reductions of up to 76%. Over-diagnosis is a controversial issue, with some results indicating it to be of negligible magnitude and others indicating that it could represent 30% or more of breast cancers in populations exposed to breast screening. Meanwhile, age-standardised cervical cancer mortality reduced by over 50% in the 15 years following introduction of an organised approach to screening. This followed earlier reductions also likely to reflect cervical screening. The roll-out of bowel screening in 2006 is too recent for reporting on effects on colorectal cancer mortality, although it is expected that effects from the one-off screening offered at 50, 55 and 65 years of age would be less than in trials where annual or biennial screening was undertaken. Source

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