Establishing the sensitivity and specificity of the gynaecological cancer distress screen.

OBJECTIVE: Nuanced distress screening tools can help cancer care services manage specific cancer groups' concerns more efficiently. This study examines the sensitivity and specificity of a tool specifically for women with gynaecological cancers (called the Gynaecological Cancer Distress Screen or DT-Gyn). METHODS: This paper presents cross-sectional data from individuals recently treated for gynaecological cancer recruited through Australian cancer care services, partner organisations, and support/advocacy services. Receiver operating characteristics analyses were used to evaluate the diagnostic accuracy of the DT-Gyn against criterion measures for anxiety (GAD-7), depression (patient health questionnaire), and distress (IES-R and K10). RESULTS: Overall, 373 individuals aged 19-91 provided complete data for the study. Using the recognised distress thermometer (DT) cut-off of 4, 47% of participants were classified as distressed, while a cut-off of 5 suggested that 40% had clinically relevant distress. The DT-Gyn showed good discriminant ability across all measures (IES-R: area under the curve (AUC) = 0.86, 95% CI = 0.82-0.90; GAD-7: AUC = 0.89, 95% CI = 0.85-0.93; K10: AUC = 0.88, 95% CI = 0.85-0.92; PHQ-9: AUC = 0.85, 95% CI = 0.81-0.89) and the Youden Index suggested an optimum DT cut-point of 5. CONCLUSIONS: This study established the psychometric properties of the DT-Gyn, a tool designed to identify and manage the common sources of distress in women with gynaecological cancers. We suggest a DT cut point ≥5 is optimal in detecting 'clinically relevant' distress, anxiety, and depression in this population.

A Comprehensive Review of Optimal Approaches to Co-Design in Health with First Nations Australians.

BACKGROUND: Australia's social, structural, and political context, together with the continuing impact of colonisation, perpetuates health care and outcome disparities for First Nations Australians. A new approach led by First Nations Australians is required to address these disparities. Co-design is emerging as a valued method for First Nations Australian communities to drive change in health policy and practice to better meet their needs and priorities. However, it is critical that co-design processes and outcomes are culturally safe and effective. Aims: This project aimed to identify the current evidence around optimal approaches to co-design in health with First Nations Australians. METHODS: First Nations Australian co-led team conducted a comprehensive review to identify peer-reviewed and grey literature reporting the application of co-design in health-related areas by and with First Nations Australians. A First Nations Co-Design Working Group (FNCDWG) was established to guide this work and team.A Collaborative Yarning Methodology (CYM) was used to conduct a thematic analysis of the included literature. RESULTS: After full-text screening, 99 studies were included. Thematic analysis elicited the following six key themes, which included 28 practical sub-themes, relevant to co-design in health with First Nations Australians: First Nations Australians leadership; Culturally grounded approach; Respect; Benefit to First Nations communities; Inclusive partnerships; and Evidence-based decision making. CONCLUSION: The findings of this review provide a valuable snapshot of the existing evidence to be used as a starting point to guide appropriate and effective applications of co-design in health with First Nations Australians.

Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians.

BACKGROUND: While co-design offers potential for equitably engaging First Nations Australians in findings solutions to redressing prevailing disparities, appropriate applications of co-design must align with First Nations Australians' culture, values, and worldviews. To achieve this, robust, culturally grounded, and First Nations-determined principles and practices to guide co-design approaches are required. AIMS: This project aimed to develop a set of key principles and best practices for co-design in health with First Nations Australians. METHODS: A First Nations Australian co-led team conducted a series of Online Yarning Circles (OYC) and individual Yarns with key stakeholders to guide development of key principles and best practice approaches for co-design with First Nations Australians. The Yarns were informed by the findings of a recently conducted comprehensive review, and a Collaborative Yarning Methodology was used to iteratively develop the principles and practices. RESULTS: A total of 25 stakeholders participated in the Yarns, with 72% identifying as First Nations Australian. Analysis led to a set of six key principles and twenty-seven associated best practices for co-design in health with First Nations Australians. The principles were: First Nations leadership; Culturally grounded approach; Respect; Benefit to community; Inclusive partnerships; and Transparency and evaluation. CONCLUSIONS: Together, these principles and practices provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide applications of co-design with First Nations Australians.

Screening for distress in women with gynaecological cancer: Adaptation of the distress thermometer for gynaecological oncology patients.

OBJECTIVE: Generic distress screening tools may not recognise the unique concerns reported in some cancer populations. The face and content validity of a screening tool derived from the National Cancer Comprehensive Network distress thermometer and problem list and adapted specifically for women with gynaecological cancer is presented. METHODS: Building on existing work, panels of clinicians and researchers, and focus groups with women treated for gynaecological cancer, developed a nuanced distress screening tool. RESULTS: The clinical reference group used an iterative process to reduce 54 items to 22 across four domains (practical/family/psychological/physical). These items were included in the draft tool, which was reviewed by two focus groups of long-term cancer survivors. Participants unanimously thought the tool was necessary though several changes were recommended. The final draft tool contained a global distress score and 25 items across the four domains. CONCLUSIONS: This measure provides a structured screening tool tailored to the concerns of women with gynaecological cancer, enhancing communication between clinicians and their patients about potentially identified and unrecognised sources of distress. Future research will focus on establishing sensitivity and specificity of this tool and further assessing its utility in clinical settings for all gynaecological cancers (including rare cancers like vulvar cancer).

Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice.

OBJECTIVES: To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision. METHODS: A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care. RESULTS: Mostly, needs assessment for women and caregivers was part of current practice but done without validated tools or a checklist. Only 30% of respondents reported having documented referral pathways. Most respondents simply recorded a plan for meeting needs within the patients' medical record (63% for patients; 46% for caregivers) rather than using a formalized care plan (15% for patients; 6% for caregivers). The interviewees' comments supported survey results that having sufficient time to discuss issues was both the most important enabling factor and the greatest barrier to successful supportive care provision. The interviewees further discussed variations in needs based on age, cultural background, and phases within the cancer care continuum, and that best practice supportive care should involve a multidisciplinary team and customizable protocols. SIGNIFICANCE OF RESULTS: There is much room for improvement in the assessment of needs and provision of supportive care to women with gynecological cancer and their caregivers. Approaches to optimize use of consultation time (e.g., needs assessment tools and referral protocols) are necessary. Flexibility in the form and mode of delivery of support may be required to meet diverse personal preferences and incorporate caregivers.

Australian women's perceptions of breast cancer risk factors and the risk of developing breast cancer.

BACKGROUND: Numerous studies have shown that the majority of women overestimate both their own risk and the populations' risk of developing breast cancer. A number of factors have been found to correlate with perceived risk. METHODS: This paper reports on a telephone survey of a nationally representative sample of approximately 3,000 Australian women aged 30 to 69 years, conducted in 2007, and compares the findings with those of a similar survey conducted in 2003. RESULTS: There was a clear tendency for respondents to overestimate the proportion of women who will develop breast cancer during their lifetime. Approximately half the respondents perceived themselves as being at the same risk of developing breast cancer as other women their age; older respondents were more likely to perceive themselves to be at a lower than average risk. Family history was recognized as a risk factor for breast cancer, although there was evident confusion in relation to risk from paternal family history. It was also evident that the association between age and risk status is poorly understood, and misconceptions of breast cancer risk factors identified in the previous survey persisted in 2007. CONCLUSION: Overall, these results suggest that there remains an educational challenge if we seek to increase the accuracy of women's perceptions of their risk for developing breast cancer, primarily in relation to the significance of age and family history as breast cancer risk factors.

Development and pilot testing of a communication aid to assist clinicians to communicate with women diagnosed with ductal carcinoma in situ (DCIS).

PURPOSE: The literature highlights the confusion amongst women diagnosed with ductal carcinoma in situ (DCIS) about aspects of their disease and treatment and the wide variation in how doctors communicate about DCIS. The DCIS communication aid (CA) was developed to assist clinicians to communicate with women diagnosed with DCIS and to improve women's understanding about their disease, prognosis and treatment options. This study aimed to assess patient and clinician perceptions of the CA. METHODS: The CA included information and diagrams about key aspects of the diagnosis, prognosis, treatment and support. It was designed to be used in clinical consultations and taken home after the consultation. Australian women with DCIS (n = 18) participated in structured interviews and clinicians (n = 7), including surgeons and radiation oncologists, completed surveys to assess their perceptions of the CA. Main outcome measures included satisfaction with the content, design and diagrams in the CA, and perceptions of the benefits of the CA and its impact on doctor-patient communication. RESULTS: All clinicians and women with DCIS reported that the CA would assist communication and help women understand their diagnosis. CONCLUSIONS: This is the first intervention designed to decrease the confusion amongst women with DCIS and improve doctor-patient communication in this area. This study highlights that interventions such as the DCIS communication aid may be a valuable resource for clinicians and women with DCIS. This study also highlights key communication challenges relating to DCIS.

Australian women's awareness of breast cancer symptoms and responses to potential symptoms.

OBJECTIVES: Poor awareness of breast cancer symptoms has been associated with patient delay in seeking help; thus reduced survival, more aggressive treatment, and fewer treatment choices. The aim of this study was to develop a representative picture of Australian women's knowledge of symptoms, experienced potential symptoms, and behavioral responses. METHODS: A general population sample of approximately 3,000 women aged 30-69 completed a telephone survey; results were compared to previous surveys conducted in 1996 and 2003. RESULTS: The most commonly cited potential symptom of breast cancer was a lump in the breast, identified by 86% of respondents (an increase from 75% in 2003). Other commonly mentioned symptoms were discharge from the nipple, pain/soreness, skin puckering, or dimpling; and a change in breast shape. The proportion unable to name any potential symptoms of breast cancer decreased from one in ten in 2003 to approximately one in twenty in 2007. The primary reason for not seeking medical advice in response to a potential symptom was the belief that breast cancer was not present. CONCLUSIONS: Health promotion efforts need to continue to aim at increasing community understanding of potential breast cancer symptoms and encouraging women to act on potential symptoms by seeking medical advice.

The 2003 Australian Breast Health Survey: survey design and preliminary results.

BACKGROUND: The Breast Health Surveys, conducted by the National Breast Cancer Centre (NBCC) in 1996 and 2003, are designed to gain insight into the knowledge, attitudes and behaviours of a nationally representative sample of Australian women on issues relevant to breast cancer. In this article, we focus on major aspects of the design and present results on respondents' knowledge about mammographic screening. METHODS: The 2003 BHS surveyed English-speaking Australian women aged 30-69 without a history of breast cancer using computer-assisted telephone interviewing. Questions covered the following themes: knowledge and perceptions about incidence, mortality and risk; knowledge and behaviour regarding early detection, symptoms and diagnosis; mammographic screening; treatment; and accessibility and availability of information and services. Respondents were selected using a complex sample design involving stratification. Sample weights against Australian population benchmarks were used in all statistical analyses. Means and proportions for the entire population and by age group and area of residence were calculated. Statistical tests were conducted using a level of significance of 0.01. RESULTS: Of the 3,144 respondents who consented to being interviewed, 138 (4.4%) had a previous diagnosis of breast cancer and were excluded leaving 3,006 completed interviews eligible for analysis. A majority of respondents (61.1%) reported ever having had a mammogram and 29.1% identified mammography as being the best way of finding breast cancer. A majority of women (85.9%) had heard of the BreastScreen Australia (BSA) program, the national mammographic screening program providing free biennial screening mammograms, with 94.5% believing that BSA attendance was available regardless of the presence or absence of symptoms. There have been substantial gains in women's knowledge about mammographic screening over the seven years between the two surveys. CONCLUSION: The NBCC Breast Health Surveys provide a valuable picture of the knowledge of Australian women about a range of issues. The present analysis shows significant gains in knowledge and behaviours relating to mammographic screening, while identifying additional areas for targeted improvement, as in the need to better communicate with women about screening and diagnostic services. Further analysis of additional core topic areas (eg., incidence, mortality, risk and treatment) will provide equally noteworthy insight.

'Would you like to talk about your future treatment options'? Discussing the transition from curative cancer treatment to palliative care.

Palliative care focuses on improving quality of life for patients with life-threatening illness and their families. There comes a time when actively pursuing aggressive curative treatment may do more harm than good. The cessation of curative treatment is often viewed as a distinct event; however, current practice guidelines suggest that a palliative approach should be gradually adopted as the disease progresses. The challenge is how to facilitate a sensitive transition from curative to palliative care. On the basis of an extensive literature review, recommended steps for facilitating this transition have been outlined. The recommendations cover: the timing of the discussion; preparing for this discussion; the environment and circumstances of the consultation; initiating the discussion; identifying the information to be provided; responding to the person's emotional reaction; introducing palliative care services; continuity of care; family concerns; cultural and linguistic diversity; concluding the discussion. These steps were based on the best available evidence. However, as there is a paucity of research in this area, only three relevant systematic reviews of randomized controlled trials were identified and only one of these reviews related directly to palliative care. The majority of the relevant research was descriptive evidence. There is a need for more high quality research in this area.