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Background and aims: Opioids are commonly prescribed to patients with chronic low back pain (LBP) despite risks of harms. We conducted a discrete choice experiment (DCE) to determine factors contributing to a general practitioner’s (GP’s) decision to prescribe either an opioid or an NSAID to a patient with chronic LBP. Methods: GPs recruited through an online survey distributed in Australia were presented with 12 questions that represented hypothetical clinical scenarios of a patient with chronic LBP. The clinical scenario varied by two patient attributes; LBP with or without referred leg pain (sciatica) and comorbidities. Participants chose their preferred alternative either an opioid, NSAID or neither (“opt-out”). Each alternative varied by three clinical attributes: the type of opioid or NSAID, the degree of pain reduction and number of adverse events. Results: 210 GPs participated in the survey. Overall, GPs preferred to prescribe an NSAID (45.2%, 95% CI 38.7% to 51.7%) over an opioid (28.8%, 95% CI 23.0% to 34.7%). However, there was no difference between the type of NSAID or opioid preferred. Patient attributes of comorbidities (zero, one, two or three), and the presence of referred leg pain (sciatica) did not influence prescribing preferences, nor did clinical attributes of pain reduction and adverse events. Conclusions: GPs prefer to prescribe an NSAID over an opioid for a patient with chronic LBP. This preference appeared fixed and was not changed by clinical (drug type, degree of pain reduction or number of adverse events) or patient attributes (comorbidities or presence of referred leg pain).

The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.

Background Children with intellectual disability (ID) frequently have significant educational, social and health care needs, resulting in caregivers often experiencing a wide range of negative effects. This paper aims to determine the impact of childhood ID on caregivers' health-related quality of life (HRQoL) across co-morbid diagnostic groups. The second aim of this study is to determine the risk factors associated with lower HRQoL in this population. Methods Caregivers of a child with ID aged between 2 and 12 years old completed an online survey to determine their HRQoL using the EQ-5D-5L measure. They were also asked demographic questions and about their dependent child's level of behavioural and emotional difficulties. Results Of the total sample of 634 caregivers, 604 caregivers completed all five questions of the EQ-5D-5L. The mean age of caregivers was 39.1 years and 91% were women. Caregivers spent on average 66.6 h per week caring for their child related to their child's disability. The mean EQ-5D-5L score of caregivers was 0.80 (95% confidence interval: 0.79, 0.82), which is below the estimated Australian population norms (mean utility score of 0.92) for the age-equivalent population. Caregivers of children with autism spectrum disorders reported the lowest HRQoL (0.77, 95% confidence interval: 0.74, 0.79) of the five included co-morbid diagnostic groups. Caregivers with a lower income, a perceived low level of social support and children with higher degree of behavioural and emotional problems were likely to have a statistically lower HRQoL. Conclusions This is the first study to produce utility values for caregivers of children with ID. The utility values can be used to compare health states and can be used to inform comparative cost-effectiveness analyses. Demonstrating that caregivers of children with ID have reduced HRQoL and that this is associated with the degree of behavioural and emotional problems has important policy implications, highlighting the potential for policy interventions that target behavioural and emotional problems to improve outcomes for caregivers.

Background Behaviour and emotional problems are highly prevalent in children with autism spectrum disorder (ASD). In typically developing children, attachment quality acts as a risk/protective factor for behavioural outcomes and adjustment, warranting investigation in children with ASD. Method We investigated the relationship between attachment and child behaviour and emotional problems in children with ASD and comorbid intellectual disability. Data were collected from parent-child dyads where children were diagnosed with ASD and ID (n = 28) or other developmental disabilities (n = 20). Results Children with ASD had higher levels of behaviour and emotional problems and more attachment difficulties than children with other developmental disabilities. Poorer attachment quality contributed uniquely to the variance in child behaviour and emotional problems. Conclusions Interventions targeting behaviour and emotional problems in children with ASD may benefit from an attachment model which addresses the child's difficulty in using caregivers as a coregulatory agent of emotions.

The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.

BACKGROUND: Incontinence-associated dermatitis is a common, under-recognized painful skin condition associated with poorer quality of life, increased nurse workloads, and costs. OBJECTIVE: To systematically review economic evidence for the prevention and treatment of incontinence-associated dermatitis. DESIGN: Systematic review of quantitative research. DATA SOURCES: PubMed, MEDLINE, EMBASE, Cochrane Library, York Centre for Reviews and Dissemination database, Econlit, Tufts' Cost-Effectiveness Analysis Registry, and Web of Science. REVIEW METHODS: A comprehensive search for studies on resource use (costs), health outcomes, and cost-effectiveness of interventions for incontinence-associated dermatitis was conducted. Screening, data extraction, and initial quality assessment were conducted independently by two reviewers, with disagreements/queries regarding quality settled through consensus with the larger team. Quality evaluated using the Consolidated Health Economic Evaluation Reporting Standards checklist and results narratively arranged. FINDINGS: Seventeen studies (10 for prevention, one for treatment and six for both prevention and treatment) included. All studies measured resource use from a healthcare provider perspective; 14 quantified resources in monetary terms. Considerable variation existed in the resource use data primarily due to differences in the type of resources counted, selected time horizons, valuation methods, and reporting approaches. Ten studies provided evidence of their intervention to be cost saving (or at least cost avoiding). Five studies on barrier products provided evidence to be cost saving: three for prevention, one for treatment, and one for both prevention and treatment. Two studies of cleanser and barrier products provided evidence to be cost saving for the prevention and treatment of incontinence-associated dermatitis. One study found a cleanser to be a cost saving preventative intervention. One bowel management system was found to be cost saving over time only, and one nurse education intervention was found to be cost saving for preventing and treating incontinence-associated dermatitis. One barrier product was found to be cost-effective for preventing and treating the condition. Finally, one study found a cleanser and barrier product was time saving for prevention. None of the studies incorporated a multi-attribute quality of life measure; however, two studies included person-reported outcome measures for pain. A narrow range of resources (mainly products) were considered, and there was limited information on how they were counted and valued. Analyses relating to heterogeneity among patients/hospital wards or health facilities and uncertainty were lacking. CONCLUSIONS: Barrier products are possibly a more cost-effective treatment than others; however, this evidence lacks certainty. Structured health economic evaluations are required for a reliable evidence-base on the interventions for incontinence-associated dermatitis. TWEETABLE ABSTRACT: Most incontinence-associated dermatitis studies lack person-reported outcomes, costs beyond product/staff time, and economic evaluation.

Anxiety and depression have a higher prevalence in cancer survivors than in the general population and are associated with lower quality of life, poorer survival and an increased risk of suicide. Anxiety and depression are also highly comorbid among cancer survivors and associated with increased health service use. As such, it is important to consider both anxiety and depression and health service use in cancer survivors.Our objective was to explore the association between anxiety and depression and health service utilisation, both cancer-specific and general doctor visits, in cancer survivors.Data from a Dutch cancer registry were analysed to determine the association between anxiety and depression (measured using the Hospital Anxiety and Depression Scale) and health service use. Negative binomial regression models, controlling for patient demographics, comorbidities and cancer-related variables were estimated.Cancer survivors (n = 2538), with a mean age of 61.1 years and between 0.7 and 10.9 years since diagnosis, were included in the analysis. Increasing levels of anxiety and depression were associated with increased health service use. Having severe levels of anxiety was associated with more frequent visits to the general practitioner (p0.001). Severe depression in cancer survivors was associated with more frequent visits to the specialist (p0.001).Anxiety and depression in cancer survivors, particularly severe anxiety and depression, were associated with increased health service use. Treatment of anxiety and depression in cancer survivors has the potential to reduce overall health service use and associated costs and improve health outcomes for cancer survivors.

BackgroundAnxiety and depression have a higher prevalence in cancer survivors than in the general population and are associated with lower quality of life, poorer survival and an increased risk of suicide. Anxiety and depression are also highly comorbid among cancer survivors and associated with increased health service use. As such, it is important to consider both anxiety and depression and health service use in cancer survivors.ObjectiveOur objective was to explore the association between anxiety and depression and health service utilisation, both cancer-specific and general doctor visits, in cancer survivors.MethodsData from a Dutch cancer registry were analysed to determine the association between anxiety and depression (measured using the Hospital Anxiety and Depression Scale) and health service use. Negative binomial regression models, controlling for patient demographics, comorbidities and cancer-related variables were estimated.ResultsCancer survivors (n = 2538), with a mean age of 61.1 years and between 0.7 and 10.9 years since diagnosis, were included in the analysis. Increasing levels of anxiety and depression were associated with increased health service use. Having severe levels of anxiety was associated with more frequent visits to the general practitioner (p < 0.001). Severe depression in cancer survivors was associated with more frequent visits to the specialist (p < 0.001).ConclusionAnxiety and depression in cancer survivors, particularly severe anxiety and depression, were associated with increased health service use. Treatment of anxiety and depression in cancer survivors has the potential to reduce overall health service use and associated costs and improve health outcomes for cancer survivors.

Objectives Screening for anxiety and depression in cancer care is recommended, as identification is the first step in managing anxiety and depression. Nevertheless, patient preferences for anxiety and depression screening in cancer care are unknown. The objective of this study was to investigate and identify the aspects of an anxiety and depression screening program cancer patients value most, to inform decision-makers about ways to improve patient uptake and ultimately, the provision of patient-centered care. Methods A discrete choice experiment was designed and implemented within an Australian cancer population sample. Participants were presented with a series of hypothetical screening programs labeled as “screening program 1” and “screening program 2” and were asked to choose their preferred one. The discrete choice experiment was administered using an online survey platform. A mixed logit and a latent class analysis was conducted. Results Participants (n = 294) preferred screening to be conducted by a cancer nurse, face-to-face, and at regular intervals (monthly or every 3 months). Participants also preferred follow-up care to be delivered by mental health professionals embedded within the cancer care team. Factors that influenced preferences were the low cost and short waiting times for access to care. Conclusions Cancer patients prefer cancer services with integrated mental healthcare services. To maximize patient uptake, anxiety and depression screening programs should be routinely offered, delivered by oncology healthcare staff in a face-to-face format, and, postscreening, to be care for by mental health professionals embedded within the cancer service.

Background There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. Methods Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10 years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall-based questionnaire. Time spent providing care because of the child's disability was obtained using a time-use diary. Results The total cost of ID in Australia was estimated to be AUD 72 027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. Conclusions This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services.

© 2018, Springer International Publishing AG, part of Springer Nature. Objectives: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations. Methods: A discrete-choice experiment (DCE) was designed to elicit an individual’s willingness to accept compensation for different care tasks. Respondents were presented choice sets that included a care package comprising different amounts and types of care and asked to choose between the care package provided free of charge or providing that care themselves and receiving cash compensation. The care package included personal care, social support, household errands and housework, with the value of compensation, number of care hours provided and types of care varied across the choice sets. Choices were analysed using a generalised multinomial logit model and latent class model. Results: A representative sample of 198 caregivers completed the survey (response rate 52%). Participants were recruited in Australia. Overall, caregivers would accept a minimum of Australian dollars ($A)20.61 to provide 1 h of care. The preferences for assistance varied significantly with different types of care tasks. Individuals placed the highest value on receiving assistance with social support ($A35.96) and the least value on receiving assistance with household errands ($A-0.92) Conclusions: This study produces a value of informal care provided to children with ID that can be directly applied in economic evaluations. The study shows that informal care tasks are not valued equally. Caregivers placed the most value on receiving assistance with social support, which may reflect the time spent by caregivers on these tasks.

This paper investigates the role of caregiver mental health and parenting practices as predictors of attachment in children with intellectual disability/developmental delay, comparing between children with ASD (n = 29) and children with other developmental disabilities (n = 20). Parents reported that children with ASD had high levels of anxiety and stress, and attachment insecurity in children (less closeness and more conflict in attachment relationships, and more inhibited attachment behaviours) compared with children with other developmental disabilities. Children's attachment quality was associated with parenting practices and the presence of an ASD diagnosis. These results highlight the bidirectional nature of the quality of caregiving environments and attachment in children with ASD, and also provide a strong rationale for targeting children's attachment quality in early interventions.

Consultation liaison (CL) services provide direct access to specialist services for support, treatment advice and assistance with the management of a given condition. Alcohol and other drugs (AOD) CL services aim to improve identification and treatment of patients with AOD morbidity. Our objective was to evaluate the costs and consequences of AOD CL services in hospitals in New South Wales, Australia. Patients were surveyed at eight hospitals and problematic AOD use was identified using the Alcohol, Smoking and Substance Involvement Screening Test (n=1615). For consenting participants, medical record data were obtained from 18 months pre- to 12 months post-survey. We used interrupted time series analyses to compare utilization and costs for patients with and without AOD problems and changes over time between those who received AOD CL and similar patients. Approximately 35% of patients surveyed had AOD problems (excluding tobacco) with 7% requiring intensive treatment. Only 24% of patients requiring intensive treatment were treated by AOD CL. Those treated had relative improvements over time in the cost of presentations to emergency departments, emergency admission performance and increased uptake of appropriate pharmaceuticals. The estimated net benefit of AOD CL services was at least AUD$100,000 savings per hospital per year. Expanding AOD CL services to address current unmet need may lead to even greater cost savings for hospitals.

Background: Dermatoses which are not sexually transmitted are referred to as non-venereal dermatoses of external genitalia. Venereal and non-venereal dermatoses tend to be confused and it is associated with guilt feeling in affected patients. The aim of the study was to study the incidence of non-venereal lesions of the genitalia and to know the incidence of non-venereal lesions of the genitalia in association with dermatoses of other parts of the body.Methods: This was a cross-sectional, clinical and observational study in 250 female patients attending dermatovenereology OPD of Vydehi Hospital, Bengaluru with non-venereal genital lesions for a period of 18 months. cases having venereal diseases were excluded from the study.Results: The study included 250 female patients with non-venereal genital lesions. Twenty-five different types of non-venereal dermatoses were observed. Inflammatory disorders were most common accounting for 128 patients (51.2%). Among inflammatory disorders lichen simplex chronicus was seen most followed by lichen sclerosus. Candidiasis was found to be more common among infections and infestations. Vitiligo was the commonest pigmentary disorder seen in our study. Other cases noted include epidermal inclusion cyst, Bartholin cyst and fibroepithelial stromal polyp. Pre malignant conditions like Bowenoid papulosis and malignant lesions like squamous cell carcinoma are also seen.Conclusions: This study helps in understanding the importance of diagnosis of non-venereal dermatoses and to differentiate it from venereal causes.

Background: Non-venereal dermatoses of external genitalia refers to those dermatoses involving external genitalia which are not sexually transmitted. These are associated with mental distress and guilt feelings in affected patients. The aim was to study the incidence of non-venereal lesions of the genitalia.Methods: This was a cross-sectional clinical observational study in 248 male patients attending dermatovenereology OPD of Vydehi Institute of Medical Sciences and Research Center with non-venereal genital lesions for a period of 18 months. Cases having venereal diseases were excluded from the study.Results: The study included 248 male patients with non-venereal genital lesions. A total of twenty-five different types of non-venereal dermatoses were noted in our study. The most common non-venereal dermatoses were Non-venereal infections, seen in 107 patients (43.14%), which includes scabies in 45 patients (18.14%), tinea cruris 25 patients (11.29%), candidiasis 28 (11.29%) followed by lichen simplex chronicus 23 cases (9.27%) and scrotal dermatitis (6.45%) other dermatoses include psoriasis, lichen planus, fixed drug eruptions, scrotal horn, histoid hansens, squamous cell carcinoma, Zoon’s balanitis.Conclusions: This study reflected the importance of diagnosis of non-Venereal dermatoses and refutes the general misconception that all genital lesions are of venereal origin.

INTRODUCTION AND AIMS: This study estimates the burden of drug and alcohol morbidity on hospitals in New South Wales (NSW) by observing a multi-site collective sample utilising survey information and data linkage. Specifically we aimed to determine the prevalence of alcohol and other drug (AOD) problems and to estimate patterns of utilisation of hospital services, costs of presentations, and admissions for patients with AOD problems. DESIGN AND METHODS: Patients were recruited from eight NSW public hospitals presenting to the hospital emergency department over a 10 day period. Participants completed a self-administered survey with demographic characteristics and questions about substance use. More than two-thirds (68%) of participants consented to provide access to their NSW Health medical data for a period spanning 2.5 years. RESULTS: One-third (35%) of the total sample were identified as having problematic AOD use with one in five of these patients requiring a high level of intervention. Those patients requiring a high level of intervention present more often and cost more per presentation. If admitted they were more likely to have longer stays and were also more likely to be admitted to a psychiatric ward and have a longer stay in the ward. DISCUSSION: This study demonstrates a need for AOD interventions in the emergency department setting, both because it represents an opportunity for intervention in a population in which problems with substance use is highly prevalent, and because there is evidence that AOD imposes additional costs on the health system. [Butler K, Reeve R, Arora S, Viney R, Goodall S, van Gool K, Burns L. The hidden costs of drug and alcohol use in hospital emergency departments. Drug Alcohol Rev 2015]. Language: en

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INTRODUCTION AND AIMS: The study aims to examine the medical and non-medical use of over-the-counter (OTC) codeine combination drugs in a sample of people who inject drugs; and to examine risk factors associated with exceeding the recommended dose of OTC codeine, including the experience of pain. DESIGN AND METHODS: This study analysed annual survey data from a convenience sample of people who inject drugs in Australia who are interviewed for the Illicit Drug Reporting System. People who have injected drugs (n = 902) on at least a monthly basis in the preceding six months across Australia were interviewed. Participants were asked about their use of OTC codeine and their experience of pain. RESULTS: One third (35%) of participants had used OTC codeine in the preceding six months and 52% (95% confidence interval 48.7-55.3) of this group had exceeded the recommended dose on their last occasion of use. This clearly places them at increased risk of harms associated with toxicity from the accompanying analgesic found in combination codeine products. Multivariate analyses demonstrated that those exceeding the recommended codeine dose of OTC codeine were more likely to be experiencing moderate to very severe pain. DISCUSSION AND CONCLUSION: There is a need to evaluate the approach to pain management in this population. Greater pharmacist involvement, real-time monitoring of sales, the development of screening tools to identify those at risk of harm and further education of primary care practitioners could be beneficial in reducing the risk of harm associated with these medications for all users of OTC codeine, including people who inject drugs. [Arora S, Roxburgh A, Bruno R, Nielsen S, Burns L. A cross-sectional analysis of over-the-counter codeine use among an Australian sample of people who regularly inject drugs. Drug Alcohol Rev 2013]. Language: en

This study estimates the burden of drug and alcohol morbidity on hospitals in New South Wales (NSW) by observing a multi-site collective sample utilising survey information and data linkage. Specifically we aimed to determine the prevalence of alcohol and other drug (AOD) problems and to estimate patterns of utilisation of hospital services, costs of presentations, and admissions for patients with AOD problems.Patients were recruited from eight NSW public hospitals presenting to the hospital emergency department over a 10 day period. Participants completed a self-administered survey with demographic characteristics and questions about substance use. More than two-thirds (68%) of participants consented to provide access to their NSW Health medical data for a period spanning 2.5 years.One-third (35%) of the total sample were identified as having problematic AOD use with one in five of these patients requiring a high level of intervention. Those patients requiring a high level of intervention present more often and cost more per presentation. If admitted they were more likely to have longer stays and were also more likely to be admitted to a psychiatric ward and have a longer stay in the ward.This study demonstrates a need for AOD interventions in the emergency department setting, both because it represents an opportunity for intervention in a population in which problems with substance use is highly prevalent, and because there is evidence that AOD imposes additional costs on the health system. [Butler K, Reeve R, Arora S, Viney R, Goodall S, van Gool K, Burns L. The hidden costs of drug and alcohol use in hospital emergency departments. Drug Alcohol Rev 2016;35:359-366].

The study aims to examine the medical and non-medical use of over-the-counter (OTC) codeine combination drugs in a sample of people who inject drugs; and to examine risk factors associated with exceeding the recommended dose of OTC codeine, including the experience of pain.This study analysed annual survey data from a convenience sample of people who inject drugs in Australia who are interviewed for the Illicit Drug Reporting System. People who have injected drugs (n = 902) on at least a monthly basis in the preceding six months across Australia were interviewed. Participants were asked about their use of OTC codeine and their experience of pain.One third (35%) of participants had used OTC codeine in the preceding six months and 52% (95% confidence interval 48.7-55.3) of this group had exceeded the recommended dose on their last occasion of use. This clearly places them at increased risk of harms associated with toxicity from the accompanying analgesic found in combination codeine products. Multivariate analyses demonstrated that those exceeding the recommended codeine dose of OTC codeine were more likely to be experiencing moderate to very severe pain.There is a need to evaluate the approach to pain management in this population. Greater pharmacist involvement, real-time monitoring of sales, the development of screening tools to identify those at risk of harm and further education of primary care practitioners could be beneficial in reducing the risk of harm associated with these medications for all users of OTC codeine, including people who inject drugs.

Background Clinical trials registries are now operating in the USA, Europe, Australia, China, and India and more are planned. Trial registries could be an excellent source of information about clinical trials for patients and others affected by cancer as well as health care professionals, but may be difficult for patients to navigate and use. Purpose An opportunity arose in Australia to develop a consumer friendly cancer clinical trials website (Australian Cancer Trials Online (ACTO), www.australiancancertrials.gov.au ) using an automated data feed from two large clinical trial registries. In this article, we describe aspects of this new website, and explore ways in which such a website may add value to clinical trial data which are already collected and held by trial registries. Methods The development of ACTO was completed by a Web company working in close association with staff at the Australian New Zealand Clinical Trials Registry (ANZCTR), and with consumer representatives. Data for the website were sourced directly and only from clinical trial registries, thus avoiding the creation of an additional trials database. It receives an automated, daily data feed of newly registered cancer clinical trials from both the ANZCTR and Clinical Trials.gov. Results The development of ACTO exemplifies the advantage of a local clinical trial registry working with consumers to provide accessible information about cancer clinical trials to meet consumers’ information needs. We found that the inclusion of a lay summary added substantial value for consumers, and recommend that consideration be given to adding a lay summary to the mandatory data items collected by all trial registries. Furthermore, improved navigation, decision support tools, and consistency in data collection between clinical trial registries will also enable consumer websites to provide additional value for users. Limitations Clinical trial registration is not compulsory in Australia. If the additional cancer items (including a lay summary) are not provided by registrants of cancer trials on ANZCTR, this can compromise the quality and usefulness of the data for the end-user, in this case consumers, as they may encounter gaps in the data. Conclusion Expanding the World Health Organization Trial Registration Data Set to include this additional information, particularly the lay summary, would be valuable. A well-coordinated system of clinical trial registration is critical to the success of efforts to provide better access for all to inform about clinical trials.