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AimConsumer health organisations (CHOs) are non-profit or voluntary sector organisations that promote and represent the interests of patients and carers affected by particular conditions. The purpose of this study was to examine, among patients with chronic disease, what differentiates those who contact CHOs from those who do not and what stops people from making contact.BackgroundCHOs can enhance people’s capacity to manage chronic disease by providing information, education and psychosocial support, but are under-utilised. Little is known about barriers to access.MethodsData were from a baseline telephone survey conducted as part of a randomised trial of an intervention to improve access to CHOs. Participants constituted a consecutive sample of 276 adults with diagnosed chronic disease recruited via 18 general practitioners in Brisbane, Australia. Quantitative survey items examined participants’ use and perceptions of CHOs and a single open-ended question explored barriers to CHO use. Multiple logistic regression and thematic analysis were used.FindingsOverall, 39% of participants had ever contacted a CHO for their health and 28% had contacted a CHO specifically focussed on their diagnosed chronic condition. Diabetes, poorer self-reported physical health and greater health system contact were significantly associated with CHO contact. The view that ‘my doctor does it all’ was prevalent and, together with a belief that their health problems were ‘not serious enough’, was the primary reason patients did not make contact.ConclusionAttitudinal and system-related barriers limit use of CHOs by those for whom they are designed. Developing referral pathways to CHOs and promoting awareness about what they offer is needed to improve access. [ABSTRACT FROM AUTHOR]

This study investigated the relationship between online information seeking and a broad range of health and social characteristics among a large sample of Australian adults with type 2 diabetes. One in four participants used the Internet for diabetes-related purposes and Internet searching was associated with high patient activation, poor metabolic control, signs of peripheral nerve damage, a recent diagnosis of diabetes and poorer patient-assessed coordination of care. No relationship was found between Internet use and treatment complexity and the presence of comorbid conditions. The findings underline the importance of providing better online health resources and support to diabetes patients, and of targeting potential intervention points where services and information may be particularly beneficial. [ABSTRACT FROM AUTHOR]

Background Stillbirth is a profoundly distressing event. Little evidence exists to guide best practice bereavement care in the perinatal setting. Aims To document parents' experiences and outcomes in relation to seeing and holding a stillborn baby at a hospital with a specialist perinatal bereavement service. Materials and Methods Prospective cohort study of 26 mothers and 11 fathers who experienced a stillbirth at the Mater Mothers' Hospital, Brisbane from September 2007-December 2008. Mailed self-report questionnaires were completed at 6-8 weeks and 6 and 13 months postloss. Validated measures assessed regret regarding the decision to see and hold the baby, parental grief and mental health. Results Of 78 fetal deaths, 26 mothers and 11 fathers participated. Most (20 mothers; 9 fathers) chose to see and hold their stillborn infant. Little regret was reported, irrespective of the decision. For mothers, seeing and holding was associated with higher 'active grief' at 6-8 weeks (mean difference ( MD) = 10.5; 95% CI = 3.3-17.8; P < 0.01), 6 months ( MD = 8.0; 95% CI = 0.6-15.4; P = 0.03) and 13 months ( MD = 9.9; 95% CI = 1.8-17.9; P = 0.01), but not with 'not coping' or 'despair', or mental health. Fathers reported poorer mental health but small numbers mean estimates are imprecise. Conclusions More intense grief does not equate with poorer mental health for mothers who choose to see and hold a stillborn infant. Fathers' experiences warrant further study. Supported decision-making is important for bereaved parents, and rigorous evaluation of bereavement care is essential. [ABSTRACT FROM AUTHOR]

Summary Background To evaluate health related quality of life (HRQOL) in TEACH, a phase III randomized placebo controlled trial of 12 months of adjuvant lapatinib in HER2 positive (HER2+) early breast cancer which demonstrated marginal benefit in disease-free survival. Methods Women on TEACH completed the Short Form 36-item health survey (version2; SF-36v2) at the baseline, six and 12 months after therapy initiation and six monthly thereafter. Mean changes were compared between treatment groups for two summary measures (Physical and Mental Component Summary scores; PCS and MCS) and eight domain measures (physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional and mental health), and in patients discontinuing therapy. A five-point change was deemed a Minimally Clinically Important Difference (MCID). Response analysis compared the proportion of patients demonstrating a MCID in HRQOL, and a regression analysis identified predictors of worsening HRQOL. Findings 3074 (97%) subjects completed baseline SF-36v2. During the initial 12 months, summary SF-36v2 scores decreased in both arms but did not reach Minimally Clinically Important Difference (MCID) despite significant incidences of diarrhoea and rash in lapatinib treated patients. At six months, women receiving lapatinib had more significant reductions ( p < 0.01 versus placebo) in social functioning. Early treatment discontinuations were more frequent on lapatinib (32% versus 18%), and were associated with more substantial decrements of HRQOL in both arms. For those discontinuing primarily due to adverse events, decrements in HRQOL reached MCID in Mental Summary scores (MCS) only. Lower baseline HRQOL was a significant predictor of worsening HRQOL ( p < 0.05). Interpretation Despite frequent but usually mild toxicities, adjuvant lapatinib is not associated with clinically significant decreases in overall HRQOL. These placebo-controlled results may also help to inform physicians and patients using lapatinib in metastatic HER2 positive breast cancer. Funding GlaxoSmithKline. The AVON Foundation NY supported PEG, DF and BM and The Friends of the Mater Foundation supported FB. [ABSTRACT FROM AUTHOR]

Background Effective strategies to address risk factors of non-communicable diseases are required to curtail the expanding costs of health care. This trial tested the effectiveness over one year of a minimal intervention targeting multiple health behaviours (diet, physical activity, alcohol and smoking) in a general practice setting, through the provision of personalised, computer-tailored feedback. Methods Patients who had attended a general practice in the previous 6 months were recruited from 21 general practitioners in Brisbane, Australia. Baseline data were collected using self-reports on adherence to ten health behaviours and summarised into a health score from 0 to 10. This randomised controlled trial used a 2x2 factorial design, with one arm randomising subjects to the intervention or control group. The other arm was either feedback at baseline (single contact) or an additional assessment with feedback at 3 months (dual contact). As such, 4 study groups created were, to which participants were randomised blindly: A. Intervention with single contact; B. Intervention with dual contact; C. Control with single contact and D. Control with dual contact. All participants were assessed again at 12 months. Results Of the 4676 participants randomised, 3065 completed questionnaires at 12 months. Both single and dual contact groups improved their 10 item health scores (+0.31 and +0.49 respectively) relative to control group outcomes (+0.02; p < 0.01). Improvement in adherence to guidelines for fish intake, type of milk consumed, vegetable and fruit intake, and alcohol intake were observed in single and dual contact intervention groups (p < 0.01). Both intervention groups showed greater improvement than controls for individual health behaviours, apart from red meat intake, smoking behaviour, physical activity and body weight. Interestingly, there was an improvement in reported non-smoking rates in both intervention and control groups (3% single contact; 4.5% dual contact). Conclusions Small but meaningful long-term changes in health behaviours can be achieved with a low-intensity intervention, which may reduce health care costs if implemented on a large scale. Further research is needed to better understand the mechanism by which maintenance of behaviour change can be achieved. Trial Registration The Australian New Zealand Clinical Trials Registry: ACTRN12611001213932. [ABSTRACT FROM AUTHOR]

Background: The adoption and maintenance of healthy behaviours is essential in the primary prevention of chronic non-communicable diseases. This study evaluated the effectiveness of a minimal intervention on multiple lifestyle factors such as diet, physical activity, smoking and alcohol, delivered through general practice, using computer-tailored feedback. Methods: Adult patients visiting 21 general practitioners in Brisbane, Australia, were surveyed about ten health behaviours that are risk factors for chronic, non-communicable diseases. Those who completed the self-administered baseline questionnaire entered a randomised controlled trial, with the intervention group receiving computer-tailored printed advice, targeting those health behaviours for which respondents were not meeting current recommendations. The primary outcome was change in summary lifestyle score (Prudence Score) and individual health behaviours at three months. A repeated measures analysis compared change in these outcomes in intervention and control groups after adjusting for age and education. Results: 2306 patients were randomised into the trial. 1711 (76%) returned the follow-up questionnaire at 3 months. The Prudence Score (10 items) in the intervention group at baseline was 5.88, improving to 6.25 at 3 months (improvement = 0.37), compared with 5.84 to 5.96 (improvement = 0.12) in the control group (F = 13.3, p = 0.01). The intervention group showed improvement in meeting recommendations for all individual health behaviours compared with the control group. However, these differences were significant only for fish intake (OR 1.37, 95% CI 1.11-1.68), salt intake (OR 1.19, 95% CI 1.05-1.38), and type of spread used (OR 1.28, 95% CI 1.06-1.51). Conclusion: A minimal intervention using computer-tailored feedback to address multiple lifestyle behaviours can facilitate change and improve unhealthy behaviours. Although individual behaviour changes were modest, when implemented on a large scale through general practice, this intervention appears to be an effective and practical tool for population-wide primary prevention. Trial Registration: The Australian New Zealand Clinical Trials Registry: ACTRN12611001213932 [ABSTRACT FROM AUTHOR]

Poorly controlled pain is a significant problem for cancer patients. Contributing factors may include concerns about analgesics and fears about the implications of pain, which may hinder open communication. We surveyed the prevalence of these concerns in Australian oncology patients and investigated associations with inadequate pain control. Ninety-three adult patients with cancer, undergoing treatment at a teaching hospital, completed the patient barriers questionnaire (BQ) and a self-report questionnaire to determine pain severity, interference with daily activities, use of analgesics and alternative therapies, and hesitation to report pain. Overall, there was a high prevalence of agreement with the BQ scales assessing concerns about communication and analgesic use. One-third of patients had clinically significant pain, which interfered with daily activities, despite use of analgesics. They were more likely to use alternative therapies for pain control, to hesitate to discuss their pain, and had significantly greater concerns about side effects of analgesics and injections. Our study confirms that patient barriers exist in this Australian population and are associated with inadequate pain control. Oncology staff need to actively screen for pain, particularly targeting patients using alternative therapies and experiencing side effects, develop communication and prescribing skills, and diversify pain management approaches beyond analgesics. Copyright © 2003 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]