Job satisfaction and regulation in the aged care sector: staff perspectives.

BACKGROUND: The quality of care provided in residential aged care facilities is largely dependent on the job satisfaction of employees and the organisational framework and systems that they provide care in. This study aimed to explore aged care staff perceptions of job satisfaction, regulation of the sector and the Royal Commission into Aged Care Quality and Safety. METHODS: A cross-sectional survey conducted in 2019-early 2020 with staff employed in various roles at residential aged care services in Australia. The study specific survey collected views and experiences about working in the aged care sector as well as information about their role. RESULTS: A total of 167 aged care staff completed the survey of which 71% worked in a direct care role. Most participants indicated they thought they were doing a worthwhile and important job (98%), were proud to work in the sector (94%) and found the job personally rewarding (94%). However, participants also reported feeling emotionally drained by the work (37%) and fatigued by having to face a day of work (30%). 72% of participants felt the Royal Commission would lead to improvements in the care provided to residents. CONCLUSION: Aged care staff have an overall positive feeling towards their work. Additional support including increasing skills to deliver high-quality care, creating a supportive work environment to reduce job stressors and changes to the way the sector is regulated, are likely to lead to improved care.

Experiences and preferences for advance care planning following a diagnosis of dementia: Findings from a cross-sectional survey of carers.

BACKGROUND: Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making. AIMS: To explore from the perspective of carers of persons with dementia: (1) Participation in future medical and financial planning by the person they care for, including when planning was undertaken and the characteristics associated with having an advance care directive completed; (2) The type of healthcare providers who discussed advance care planning following diagnosis; and (3) Preferences for timing of discussions about advance care planning following diagnosis. METHODS: Recruitment and data collection took place between July 2018 and June 2020. Carers of persons with dementia aged 18 years and older were mailed a survey. Participants completed questions regarding completion of various future planning documents by the person they support, including time of completion and who discussed advance care planning following diagnosis. Participants were presented with information about the benefits and consequences of early and late discussions of advance care planning and asked when discussions about advance care planning were best initiated. RESULTS: 198 carers participated. Most participants were female (74%) and had been a carer for more than 2 years (82%). Most participants reported that the person with dementia they support had made a Will (97%) and appointed an Enduring Guardian (93%) and Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. No significant associations were found between characteristics of persons with dementia and completion of an advance care directive. Geriatricians (53%) and GPs (51%) most often discussed advance care planning following diagnosis. Most carers thought that discussions about advance care planning should occur in the first few weeks or months following diagnosis (32%), at the healthcare provider's discretion (31%), or at the time of diagnosis (25%). CONCLUSIONS: More than half of persons with dementia do not have an advance care directive. There is variability in preferences for timing of discussions following dementia diagnosis.

Depression and thoughts of self-harm and suicide among people living with dementia: results of a cross-sectional survey.

BACKGROUND: Depression is common among people with dementia. Despite most people with dementia living in the community, there have been few investigations of self-reported depressive symptoms and suicidal ideation among community-dwelling people with dementia in Australia. This study aimed to explore the proportion of people with mild, moderate and severe levels of depressive symptoms, and suicidal ideation among a sample of people living with dementia in Australia. Correlates of reporting depressive symptoms were also explored. METHODS: Adults diagnosed with dementia by a medical professional who were English speaking and community-dwelling were asked to complete a paper and pencil survey. Those who were unable to provide independent consent were excluded. Depression was assessed using the Geriatric Depression Scale -15, and suicidal ideation was assessed using two study-specific items. Multivariable analyses examined quality of life, unmet needs and sociodemographic factors associated with having a score of five or more on the Geriatric Depression Scale-15. RESULTS: Ninety-four people participated in the study. Thirty-seven percent (n = 35) reported some level of depressive symptoms, with most of these (21%, n = 20) classified as having mild depressive symptoms. Five participants (5%) reported they had had thoughts of being better off dead or hurting themselves, while three (3%) reported having had a plan to end their life. For each additional unmet need, the odds of being depressed increased by 25%(P < 0.001). For each point increase in quality of life, the odds of being depressed decreased by 48% (P < 0.001). CONCLUSIONS: The high proportion of people with dementia who report depressive symptoms suggests the need to routinely assess depressive symptoms among this group. There may also be benefits in assessing unmet needs and addressing these where possible as part of an approach to reducing depression among people living with dementia in the community.

A mixed methods evaluation of Quit for new life, a smoking cessation initiative for women having an Aboriginal baby.

BACKGROUND: Quit for new life (QFNL) is a smoking cessation initiative developed to support mothers of Aboriginal babies to quit smoking during pregnancy. The state-wide initiative provides support for pregnant women and their households including free nicotine replacement therapy (NRT) and follow up cessation advice. Services are also supported to implement systems-level changes and integrate QFNL into routine care. This study aimed to evaluate: (1) models of implementation of QFNL; (2) the uptake of QFNL; (3) the impact of QFNL on smoking behaviours; and (4) stakeholder perceptions of the initiative. METHODS: A mixed methods study was conducted comprising semi-structured interviews and analysis of routinely collected data. Interviews were conducted with 6 clients and 35 stakeholders involved in program implementation. Data were analysed using inductive content analysis. Aboriginal Maternal and Infant Health Service Data Collection (AMDC) records for the period July 2012-June 2015 were investigated to examine how many eligible women attended a service implementing QFNL and how many women took up a QFNL support. Smoking cessation rates were compared in women attending a service offering QFNL with women attending the same service prior to the implementation of QFNL to determine program impact. RESULTS: QFNL was implemented in 70 services located in 13 LHDs across New South Wales. Over 430 staff attended QFNL training, including 101 staff in Aboriginal-identified roles. In the period July 2012-June 2015 27% (n = 1549) of eligible women attended a service implementing QFNL and 21% (n = 320) of these were recorded as taking up a QFNL support. While stakeholders shared stories of success, no statistically significant impact of QFNL on smoking cessation rates was identified (N = 3502; Odds ratio (OR) = 1.28; 95% Confidence Interval (CI) = 0.96-1.70; p-value = 0.0905). QFNL was acceptable to both clients and stakeholders, increased awareness about smoking cessation, and gave staff resources to support clients. CONCLUSION: QFNL was perceived as acceptable by stakeholders and clients and provided care providers with knowledge and tangible support to offer women who presented at antenatal care as smokers, however, no statistically significant impact on rates of smoking cessation were found using the measures available.

Prevalence and type of unmet needs experienced by carers of people living with dementia.

OBJECTIVES: Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. METHODS: This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. RESULTS: A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. CONCLUSION: This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted.Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Perceptions of people living with dementia regarding patient-centred aspects of their care and caregiver support.

OBJECTIVE: This study examined the perceptions of a sample of Australian people living with dementia regarding the person-centred care and support they received from health professionals and family. METHODS: Community-dwelling people living with dementia were invited to complete a cross-sectional survey. RESULTS: Seventy-one people participated in the study. More than 90% agreed that health professionals explain who they are, why they are seeing them and listen to what they have to say; 63% agreed that health professionals ask how they would like to be involved in decisions about treatment; 78% agreed health professionals mainly speak to them rather than anyone accompanying them; 76% reported their family 'support you to do tasks by yourself', and 36% indicated that family caregivers 'get frustrated with you'. CONCLUSIONS: Results suggest that people living with dementia have a positive perception of the care and support they receive. Improvements may be needed in how health professionals speak directly to the person living with dementia when exploring how they would like to be involved in treatment decisions. Family caregivers may benefit from education and support on how they can manage frustrations and assist the person they support to maintain their independence.

Prevalence and Type of Unmet Needs Experienced by People Living with Dementia.

BACKGROUND: Accurately identifying the unmet needs of community-dwelling people with dementia allows targeted support to be provided to assist these individuals to stay at home. OBJECTIVE: We developed a self-report instrument to identify the unmet needs of community-dwelling people with dementia and used this to explore the prevalence and type of unmet needs present in this population. METHODS: This was a cross-sectional survey of people with dementia living in the community in Australia. Participants were recruited from geriatric clinics, respite centers, aged care providers, and carers attending support groups. Eligible people with dementia were provided with a study information pack and survey which included the self-report Unmet Needs Instrument for Dementia (UNI-D), sociodemographic characteristics and survey acceptability. RESULTS: The UNI-D contained 26 items across 5 domains and demonstrated acceptable internal consistency, face and construct validity, and acceptability. Ninety-five eligible participants completed the survey (response rate 35%) with 85% identifying at least one unmet need (median = 4; IQR = 1-9). The items most frequently endorsed included needing more help with remembering things (64%), finding possible treatments for dementia (44%), understanding who to contact regarding a problem or concern related to dementia (36%), and to see friends and family more often (33%). CONCLUSION: The UNI-D is a promising tool to identify the self-reported needs of people with dementia. The development and rigorous testing of interventions targeting unmet needs related to health and wellbeing, dementia support, and meaningful activities appears warranted.

Systems-level audit and feedback interventions to improve oncology care: a scoping review.

Audit and feedback is commonly used as a method of both monitoring and attempting to improve the quality of healthcare. No review has examined the literature on systems-level audit and feedback strategies to improve the quality of oncology care. This scoping review examines the number, care focus (technical, nontechnical, or both) and methodological quality of published intervention studies which have used systems-level audit and feedback intended to improve the quality of care delivered in oncology treatment centers. Medline, Embase, PsycINFO, and the Cochrane database were searched, from inception to March 2021, for intervention studies which examined the effectiveness of systems-level audit and feedback in improving care for cancer patients. Studies which met the Effective Practice and Organization of Care (EPOC) minimum design criteria were then assessed using the EPOC risk of bias tool. Study characteristics and outcomes were extracted for those meeting methodological criteria. A narrative approach was used to synthesize the results. A total of 32 intervention studies met the inclusion criteria, of which 53% focused on technical aspects of care, 31% focused on nontechnical and 16% focused on both. Four of the included 32 studies met the EPOC minimum design criteria (13%). Most studies had a before-after study design (75%; n = 24) and methodological quality of the final four studies was moderate. Audit and feedback studies involving oncology treatment centers have primarily focused on technical care aspects. The low number and moderate methodological quality of the studies make it difficult to draw clear inferences about the effectiveness of systems-level audit and feedback. Furthermore, high-quality audit and feedback interventions are required across technical and nontechnical aspects of care to quantify the effectiveness of strategies for improving cancer care and ensure healthcare resources are being optimized.

Auditing clinical practice and providing performance feedback is commonly used as a method of monitoring and attempting to improve the quality of healthcare. The scope of the research evidence on audit and feedback strategies to improve patient care across an oncology treatment centers is currently unclear. A scoping review of the literature was conducted to explore the research in this area. After assessing included studies for scientific rigor, only four intervention studies were considered to use a sound research design. The low number of studies make it difficult to draw clear conclusions about the effectiveness of systems-level audit and feedback. This area represents an important field for future research.

Discussions About Lifestyle Risk Factors Following a Cancer Diagnosis: Findings from a Sample of Australian Cancer Outpatients.

Individuals with a previous cancer diagnosis are at risk of cancer recurrence. However, many cancer survivors do not adhere to lifestyle recommendations to reduce cancer risk. Little is known about the extent to which cancer patients are asked about lifestyle risk factors by healthcare providers following diagnosis. The aim of this study is to determine among Australian cancer survivors the (1) proportion asked about smoking, alcohol consumption, nutrition and physical activity; (2) total number of lifestyle risk factors asked about; and (3) factors associated with being asked about fewer risk factors. A cross-sectional survey was conducted with cancer patients attending outpatient clinics. Eligible patients completed a baseline survey and a second survey 4 weeks later. Data about demographic and disease characteristics, and whether participants had been asked about smoking, alcohol, physical activity and diet since being diagnosed with cancer, was collected. A total of 144 patients were included in the analyses. Following diagnosis, most had been asked about smoking (86%), alcohol consumption (85%), physical activity (80%) and diet (69%) by a healthcare provider. Sixty-one percent of participants reported being asked about all four risk factors; only 6% recalled being asked about none. After controlling for age, participants with a high school or lower education were more likely to be asked about fewer risk factors (OR 2.16; 95%CI 1.0 to 4.6; p = 0.04) compared with those with a trade, vocational or university-level education. Just over one-third of a sample of Australian cancer patients were not asked about all assessed lifestyle risk factors following their diagnosis of cancer. These findings suggest there is scope to improve identification of lifestyle risk factors among cancer survivors.

Costs and Cost-Effectiveness of Targeted, Personalized Risk Information to Increase Appropriate Screening by First-Degree Relatives of People With Colorectal Cancer.

Background. Economic evaluations are less commonly applied to implementation interventions compared to clinical interventions. The efficacy of an implementation strategy to improve adherence to screening guidelines among first-degree relatives of people with colorectal cancer was recently evaluated in a randomized-controlled trial. Using these trial data, we examined the costs and cost-effectiveness of the intervention from societal and health care funder perspectives. Method. In this prospective, trial-based evaluation, mean costs, and outcomes were calculated. The primary outcome of the trial was the proportion of participants who had screening tests in the year following the intervention commensurate with their risk category. Quality-adjusted life years were included as secondary outcomes. Intervention costs were determined from trial records. Standard Australian unit costs for 2016/2017 were applied. Cost-effectiveness was assessed using the net benefit framework. Nonparametric bootstrapping was used to calculate uncertainty intervals (UIs) around the costs and the incremental net monetary benefit statistic. Results. Compared with usual care, mean health sector costs were $17 (95% UI [$14, $24]) higher for those receiving the intervention. The incremental cost-effectiveness ratio for the primary trial outcome was calculated to be $258 (95% UI [$184, $441]) per additional person appropriately screened. The significant difference in adherence to screening guidelines between the usual care and intervention groups did not translate into a mean quality-adjusted life year difference. Discussion. Providing information on both the costs and outcomes of implementation interventions is important to inform public health care investment decisions. Challenges in the application of cost-utility analysis hampered the interpretation of results and potentially underestimated the value of the intervention. Further research in the form of a modeled extrapolation of the intermediate increased adherence effect and distributional cost-effectiveness to include equity requirements is warranted.

Receipt of information about diet by pregnant women: A cross-sectional study.

PROBLEM: Given the influence of diet on infant and maternal health outcomes, adequate knowledge about nutrition during pregnancy is critical. AIMS: To examine among women receiving antenatal care the proportion who: (1) believe information about diet should be provided as part of routine antenatal care; (2) recall receiving advice about diet as part of care including: (a) when information was provided, (b) the healthcare provider who gave information, and (c) the format in which it was provided; and (3) attitudes towards information received. METHODS: A cross-sectional survey was conducted with women attending a public antenatal clinic in New South Wales, Australia. Women were eligible to participate if they were: pregnant or had given birth in the previous 10 weeks; ≥18 years; and had at least one prior antenatal appointment for their current pregnancy. FINDINGS: A total of 223 women (64% consent rate) participated. While the majority (86%) believed healthcare providers should be giving dietary information to pregnant women, only 63% recalled receiving information during their current pregnancy. Most often it was given by a midwife (76%). Information was initially provided in the first (52%) or second (38%) trimester, in both written and verbal form (60%). Approximately one third of participants felt overwhelmed or confused by which foods should be avoided during pregnancy. CONCLUSIONS: A third of women did not recall receiving advice about diet as part of routine antenatal care. There is a need to develop a pathway to provide women with reliable, comprehensive advice about diet early in pregnancy.

Screening for recommended antenatal risk factors: How long does it take?

BACKGROUND: Detection and management of antenatal risk factors is critical for quality care. AIMS: To determine (1) women's views about when they should be asked about antenatal health factors as recommended in the Australian antenatal guidelines; and (2) the time required to provide recommended care using a clinical scenario. METHODS: In Phase 1, pregnant women attending an outpatient obstetrics clinic at a public hospital were surveyed about preferred screening for antenatal risk factors during visit(s). In Phase 2, a hypothetical clinical scenario of a woman attending her first antenatal visit with a practising midwife was video-recorded to extrapolate the time taken to ask about and offer assistance to manage clinical, screening and lifestyle risk factors. FINDINGS: Most women (96%) perceived they should be asked about each of the risk factors at least once (i.e. at first visit). Total time taken to ask about all risk factors was 52min. More time was spent discussing clinical (11min) than lifestyle factors (4min). Adjusting for the estimated prevalence of each risk factor, the time taken to offer assistance was 8min per woman. Average time required for detecting and offering assistance to manage risk factors is 60min per average risk woman. CONCLUSION: Women are willing to be asked about risk factors; however this process is time-consuming. Strategies to streamline visits and prioritise recommendations so time-efficient yet comprehensive care can be delivered are needed, particularly when factors require monitoring over time and for those who may be 'at-risk' for multiple factors.

Improving adherence to colorectal cancer surveillance guidelines: results of a randomised controlled trial.

BACKGROUND: Colorectal cancer (CRC) survivors are at increased risk of developing the disease again. Surveillance guidelines are aimed at maximising the early detection of recurring or new cancers and pre-cancerous polyps. The frequency and type of surveillance recommended depends on the type of treatment for the initial CRC, the extent of colonoscopic investigation prior to treatment and the results of previous surveillance tests. This paper aimed to test the effect of a paper-based educational intervention to improve adherence to colonoscopy following treatment for colorectal cancer. METHODS: People with a diagnosis of colorectal cancer within the last 10 months, aged ≥18 and English speaking were recruited through a population-based cancer registry in Australia. Participants were randomly allocated to either the intervention or control. Participants completed an interview at baseline. Self-reported participation in colonoscopy was obtained at 12 month followup by survey. Those allocated to the control received a generic pamphlet on colorectal cancer treatment; while intervention participants received a letter which provided specific information about guideline recommendations for surveillance colonoscopy. Rates of guideline adherence were compared between groups. The guideline recommendations for the timing of surveillance colonoscopy changed part way through the study. This change occurred after all intervention materials had been sent, but prior to all participants completing the 12 month follow up. Post hoc analyses were conducted to assess adherence to the new guidelines. RESULTS: Of the 767 participants, 604 (79%) had had surgery, had stage I - III disease and completed the baseline interview within 12 months of diagnosis (intervention = 305; control = 299). There was no significant difference between those adherent to surveillance colonoscopy guidelines, in the control (67, 27%) and intervention groups (80, 31%) at followup (difference = 4.3% (95%CI:-3.7%, 12%), χ 2(1df) = 1.09, P = 0.296). Overall, 246 (49%) participants were adherent to the new guidelines, compared to 147 (29%) adherent to the old guidelines. CONCLUSIONS: Results indicate the paper-based educational intervention is not effective in improving adherence to colorectal cancer surveillance guidelines for colonoscopy. TRIAL REGISTRATION NUMBER: ACTRN12609000628246 Registration date: 28/07/2009.

Diet during pregnancy: Women's knowledge of and adherence to food safety guidelines.

BACKGROUND: As a precaution against acquiring food-borne illnesses, guidelines recommend women avoid some foods during pregnancy. AIMS: To examine among women receiving antenatal care: (i) level of knowledge and self-reported adherence to guidelines about foods that should be avoided during pregnancy; and (ii) associated socio-demographic characteristics. METHODS: Women attending a public outpatient clinic who were: pregnant or had recently given birth; 18 years or older; able to complete an English language survey with minimal assistance; and had at least one prior antenatal appointment for their current pregnancy, were asked to complete a cross-sectional survey. RESULTS: In total 223 women (64% consent rate) participated. Knowledge of foods to avoid during pregnancy was poor, with 83% of women incorrectly identifying at least one unsafe food as safe to consume. The average knowledge score for foods to avoid during pregnancy was 7.9 (standard deviation = 3.4; median = 9; interquartile range: 6-11; n = 218) out of a possible score of 12. Having more general practice (GP) visits for antenatal care and fewer tertiary antenatal visits were significantly associated with higher knowledge. Women with a higher number of GP visits and those receiving care in a high-risk clinic were more likely to be adherent to guidelines. CONCLUSIONS: The majority of pregnant women have poor knowledge of food avoidance guidelines and continue to consume foods that put them at risk.

Can a print-based intervention increase screening for first degree relatives of people with colorectal cancer? A randomised controlled trial.

OBJECTIVE: To test the effectiveness of a targeted print-based intervention to improve screening adherence in first degree relatives of people with colorectal cancer (CRC). METHODS: People with CRC and their adult first degree relatives were identified through a population-based cancer registry and randomly allocated as a family unit to the intervention or control condition. The control group received general information about CRC screening. The intervention group received printed advice regarding screening that was targeted to their risk level. Screening adherence was assessed at baseline and at 12 months via self report. RESULTS: 752 (25%) index cases and 574 (34%) eligible first degree relatives consented to take part in the trial and completed baseline interviews. At 12 months, 58% of first degree relatives in the control group and 61% in the intervention group were adherent to screening guidelines (mixed effects logistic regression group by time interaction effect =2.7; 95%CI=1.2-5.9; P=0.013). Subgroup analysis indicated that the intervention was only effective for those with the lowest risk. CONCLUSIONS: Provision of personalised risk information may have a modest effect on adherence to CRC screening recommendations among first degree relatives of people diagnosed with CRC. IMPLICATIONS: Improved strategies for identifying and engaging first degree relatives are needed to maximise the population impact of the intervention.

Women's perceptions of antenatal care: are we following guideline recommended care?

BACKGROUND: Detection and management of antenatal risk factors is critical for improved maternal and infant outcomes. This study describes the proportion of pregnant women who self-reported being screened for and offered advice to manage antenatal risk factors in line with antenatal care recommendations; and the characteristics associated with rates of screening. METHODS: A survey was undertaken with 223 (64 % of eligible) pregnant women recruited from an outpatient obstetrics clinic at a public hospital. Participants self-reported whether they were: (i) screened for 23 guideline-recommended risk factors during their antenatal visit; (ii) offered assistance to manage identified risk factor(s); and (iii) received assistance that was of benefit. Association between rate of screening and participant characteristics was examined using multivariate quantile regression. RESULTS: Overall, 23 % of women reported that they were asked about every risk factor. Weight gain (48 %), diet (60 %) and oral health (31 %) were least frequently screened risk factors. The number of women who reported they were offered advice to manage identified risks and the value of that advice was perceived by women as suboptimal. Those women receiving shared care between a midwife and general practitioner, of Aboriginal or Torres Strait Islander descent, and without private health insurance reported being screened for a greater number of risk factors. CONCLUSIONS: Pregnant women report suboptimal rates of screening and management of antenatal risk factors. Initiatives to improve consistency in detection of antenatal risk factors and the application of appropriate interventions to manage those risk factors that are detected are required.

Experiences of colorectal cancer patients in the 2-years post-diagnosis and patient factors predicting poor outcome.

PURPOSE: There are few recent longitudinal studies investigating the quality of life of colorectal cancer patients in the early years following diagnosis. This study aimed to (i) compare the health status of people with colorectal cancer less than 1 year from diagnosis with health status 1 year later and (ii) determine the characteristics associated with a change in overall health status. METHODS: The study was conducted as part of a larger trial. Participants (n = 539) were identified via the Victorian Cancer Registry in Australia, completed a computer-assisted baseline telephone interview (including the EQ-5D-3L) within 6-12 months of diagnosis, and mailed a survey 12 months later. RESULTS: At baseline, the majority of participants (55 %) reported some problems, including difficulties in usual activities (26 %), pain or discomfort (25 %), anxiety or depression (23 %) and mobility issues (15 %). Sixty-nine percent had either an unchanged or increased health utility score from baseline to follow-up. The largest proportion reporting an increase in problems between baseline and follow-up related to pain or discomfort (18 %). While visual analogue scale scores indicated a significantly improved health state over time overall, 32 % reported a decreased health utility score from baseline to follow-up. Those aged over 80 years were more likely to report a decreased health utility score compared to 60-80-year-olds. CONCLUSIONS: A sizeable minority of patients experience ongoing problems in their daily lives and should be offered assistance in overcoming disabilities and returning to best possible functioning, particularly older patients who appear to be vulnerable to poor outcomes.

Assessment of family history of colorectal cancer in primary care: perceptions of first degree relatives of people with colorectal cancer.

OBJECTIVE: First degree relatives (FDRs) of someone with colorectal cancer (CRC) are at increased risk of the disease. In this study we examine the factors associated with discussing family history of CRC with a health professional. METHODS: People with CRC, recruited through the population-based Victorian Cancer Registry in Australia, were asked to refer FDRs to the study. Eight hundred and nineteen FDRs completed a telephone interview. RESULTS: Thirty-six percent of FDRs recalled ever being asked about their family history of bowel cancer by a health professional. Factors associated with having this discussion were being aged 50-60 years, having a university education, being in the potentially high risk category, being very worried about getting bowel cancer and knowing that family history increases risk through discussions with family, friends or their own education. CONCLUSION: Despite evidence that doctor endorsement is a key factor in the uptake of CRC screening, our study shows that the majority of FDRs do not recall being asked by a health professional about their family history. PRACTICE IMPLICATIONS: There is a need to identify the most appropriate method to improve rates of health professional discussion of family history with relatives of CRC patients in order to improve screening rates.

Access to care and impacts of cancer on daily life: do they differ for metropolitan versus regional hematological cancer survivors?

PURPOSE: Little is known about access to care for hematological cancer patients. This study explored patient experiences of barriers to accessing care and associated financial and social impacts of the disease. Metropolitan versus nonmetropolitan experiences were compared. METHODS: A state-based Australian cancer registry identified adult survivors of hematological cancers (including lymphoma, leukemia and myeloma) diagnosed in the previous 3 years. Survivors were mailed a self-report pen and paper survey. FINDINGS: Of the 732 eligible survivors, 268 (37%) completed a survey. Forty percent of participants reported at least one locational barrier which limited access to care. Only 2% reported cancer-related expenses had restricted their treatment choices. Almost two-thirds (64%) reported at least one financial or social impact on their daily lives related to cancer. The most frequently reported impacts were the need to take time off work (44%) and difficulty paying bills (21%). Survivors living in a nonmetropolitan location had 17 times the odds of reporting locational or financial barriers compared with those in metropolitan areas. Preferred potential solutions to alleviate the financial and social impacts of the disease were: free parking for tests or treatment (37%), free medications or treatments (29%), and being able to get treatment in their local region (20%). CONCLUSIONS: Providing more equitable access to care for hematological cancer patients in Australia requires addressing distances traveled to attend treatment and their associated financial and social impacts on nonmetropolitan patients. Greater flexibility in service delivery is also needed for patients still in the workforce.

Estimating effective population size from linkage disequilibrium between unlinked loci: theory and application to fruit fly outbreak populations.

There is a substantial literature on the use of linkage disequilibrium (LD) to estimate effective population size using unlinked loci. The Ne estimates are extremely sensitive to the sampling process, and there is currently no theory to cope with the possible biases. We derive formulae for the analysis of idealised populations mating at random with multi-allelic (microsatellite) loci. The 'Burrows composite index' is introduced in a novel way with a 'composite haplotype table'. We show that in a sample of diploid size S, the mean value of x2 or r2 from the composite haplotype table is biased by a factor of 1-1/(2S-1)2, rather than the usual factor 1+1/(2S-1) for a conventional haplotype table. But analysis of population data using these formulae leads to Ne estimates that are unrealistically low. We provide theory and simulation to show that this bias towards low Ne estimates is due to null alleles, and introduce a randomised permutation correction to compensate for the bias. We also consider the effect of introducing a within-locus disequilibrium factor to r2, and find that this factor leads to a bias in the Ne estimate. However this bias can be overcome using the same randomised permutation correction, to yield an altered r2 with lower variance than the original r2, and one that is also insensitive to null alleles. The resulting formulae are used to provide Ne estimates on 40 samples of the Queensland fruit fly, Bactrocera tryoni, from populations with widely divergent Ne expectations. Linkage relationships are known for most of the microsatellite loci in this species. We find that there is little difference in the estimated Ne values from using known unlinked loci as compared to using all loci, which is important for conservation studies where linkage relationships are unknown.