Persisting gaps in dementia carer wellbeing and education: A qualitative exploration of dementia carer experiences.

AIMS: To explore the emotional wellbeing of dementia carers in the lead up to and during transition of a person living with dementia to a residential aged care facility. DESIGN: An interpretative qualitative study. METHODS: Semi-structured interviews were conducted with informal carers of person living with dementia between February and June 2023. Data were analysed using an inductive thematic approach and resulted in three themes. RESULTS: The majority of carers were adult children (n = 19) and six were wives. Carers lived across metropolitan (n = 20) and regional settings (n = 5) in the most populous state of Australia. Three themes were identified which were attributed to different aspects of the carer role: (1) Carer emotional journey as dementia progresses - impacted by knowledge and lack of support; (2) Questioning decision making-underpinned by knowledge and confidence; and (3) Challenges in re-establishing identity - impacted by ongoing concerns. CONCLUSION: As dementia progresses carers of person living with dementia consistently reported gaps in knowledge including how to access support. Specifically, this study identified the need for more to be done to help carers to develop the skills needed for their role, including participation in care planning and identifying care preferences for the future. Nurses can play a key role in promoting referral to services that support carers. Findings offer practical solutions to ameliorate carer stress and promote shared decision making. REPORTING METHOD: This research was guided by the Consolidated Criteria for Reporting Qualitative Research.

Dementia is the second most feared condition among Australian health service consumers: results of a cross-sectional survey.

Fear of disease may act as a barrier to screening or early diagnosis. This cross-sectional survey of 355 people attending outpatient clinics at one Australian hospital found that cancer (34%) and dementia (29%) were the most feared diseases. Participants aged 65 years and over feared dementia the most.

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 .

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.

Optimising diagnosis and post-diagnostic support for people living with dementia: geriatricians' views.

BACKGROUND: Providing a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains. METHODS: An anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care. RESULTS: Of 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines. CONCLUSIONS: Geriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines.

Attitude toward dementia and preferences for diagnosis in Japanese health service consumers.

BACKGROUND: Being diagnosed with dementia is a confronting experience for any individual and their caregiver. However, a diagnosis provides opportunity for future preparation for management of the condition. This study investigated attitudes toward dementia and preferences for diagnosis among a sample of health service consumers in Japan. METHODS: Participants were patients or accompanying support persons (n = 217) who visited the specialty outpatient clinic of four hospital departments. The survey was conducted using an iPad with answers sent automatically to a secure server. The survey included items about the participants' most feared diseases and the reasons behind those fears, estimates of dementia prevalence in Japan, and preferences regarding a diagnosis of dementia and the reasons for their preference. RESULTS: The most feared disease was cancer (43.8 %), followed by dementia (18 %). Those selecting dementia most commonly reported practical, emotional and social impacts as the reasons why they most feared this condition. Almost all participants preferred to know the diagnosis of dementia as soon as possible for themselves, with significantly fewer preferring their spouse to know as soon as possible if they had dementia (95.9 % for self vs. 67.5 % for partner/spouse, p < 0.001). On average, participants estimated that 18.1 % of Japanese people are diagnosed with dementia by age 65, while they thought that 43.7 % of Japanese people are diagnosed with dementia by age 85. CONCLUSIONS: The findings highlight a need for community education about the significant impacts of dementia on the lives of individuals and their caregivers. People were more reluctant for their spouse to receive a diagnosis as soon as possible if they had dementia. Physicians should sensitively disclose diagnosis and ensure they involve both the patient and their relatives in discussions about diagnosis disclosure.

Use of the supportive care framework to explore haematological cancer survivors' unmet needs: a qualitative study.

BACKGROUND: Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS: Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS: Participants had a mean age of 57 years (SD 13). Most were male (n = 10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS: To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.

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.

Advance Research Directives: Legal and Ethical Issues and Insights from a National Survey of Dementia Researchers in Australia.

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n= 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57-80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning.

Can models of self-management support be adapted across cancer types? A comparison of unmet self-management needs for patients with breast or colorectal cancer.

PURPOSE: There is an increased focus on supporting patients with cancer to actively participate in their healthcare, an approach commonly termed 'self-management'. Comparing unmet self-management needs across cancer types may reveal opportunities to adapt effective self-management support strategies from one cancer type to another. Given that breast and colorectal cancers are prevalent, and have high survival rates, we compared these patients' recent need for help with self-management. METHOD: Data on multiple aspects of self-management were collected from 717 patients with breast cancer and 336 patients with colorectal cancer attending one of 13 Australian medical oncology treatment centres. RESULTS: There was no significant difference between the proportion of patients with breast or colorectal cancer who reported a need for help with at least one aspect of self-management. Patients with breast cancer were significantly more likely to report needing help with exercising more, while patients with colorectal cancer were more likely to report needing help with reducing alcohol consumption. When controlling for treatment centre, patients who were younger, experiencing distress or had not received chemotherapy were more likely to report needing help with at least one aspect of self-management. CONCLUSIONS: A substantial minority of patients reported an unmet need for self-management support. This indicates that high-quality intervention research is needed to identify effective self-management support strategies, as well as implementation trials to identify approaches to translating these strategies into practice. Future research should continue to explore whether self-management support strategies could be adapted across cancer types.

What is a 'timely' diagnosis? Exploring the preferences of Australian health service consumers regarding when a diagnosis of dementia should be disclosed.

BACKGROUND: Recently the dementia field has shifted focus away from the early diagnosis debate in favour of 'timely' diagnosis. 'Timely' diagnosis disclosure takes into consideration the preferences and unique circumstances of the individual. Determining when diagnosis disclosure is 'timely' may be particularly complex if there are differing views between the individual, their family, and their health care providers regarding disclosure. This study explores the preferences of consumers regarding when a diagnosis of dementia should be communicated. METHODS: A cross-sectional survey was conducted with English-speaking adults attending outpatient clinics at an Australian hospital. Participants were recruited by a research assistant in the clinic waiting room and invited to complete the survey on a web-connected iPad. The survey included questions examining socio-demographics and experience with dementia. Two scenarios were used to explore preferences for timing of diagnosis disclosure. RESULTS: Of 446 participants, 92% preferred a diagnosis of dementia to be disclosed as soon as possible. Preferences were not associated with socio-demographics or previous dementia experience. Most participants also preferred disclosure to occur as soon as possible if their spouse or partner was diagnosed with dementia (88%). There was strong correlation between preferences for self and preferences for spouse (0.91). CONCLUSIONS: These findings provide guidance to health care providers about preferences for disclosure of a dementia diagnosis, and may help to overcome potential barriers to timely diagnosis. As the prevalence of dementia increases, consumers' preference for diagnosis to occur as soon as possible has important implications for the health system.

Who are the support persons of haematological cancer survivors and how is their performance perceived?

OBJECTIVE: To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly. METHODS: This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population-based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person. RESULTS: A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as "not well/somewhat well." CONCLUSIONS: Health care providers should consider providing additional education and skills-based interventions to support persons who experience increased symptoms of depression.

Quantifying the unmet needs of caregivers of people with dementia: a critical review of the quality of measures.

OBJECTIVE: The array of demanding tasks carried out by caregivers of people with dementia have significant negative impacts on their physical, mental and social well-being. Needs assessment allows individuals to indicate the extent to which their needs across different areas have or have not been met, allowing for estimations of the prevalence of needs and the extent to which help is required. This approach is extremely valuable in a clinical context, as it enables identification of the areas with which caregivers report a particular desire for help and allows targeting of support and resources to those who identify high levels of unmet needs. This systematic review aimed to critically examine the psychometric properties of measures that assess unmet needs of caregivers of people with dementia. METHODS: Medline, Embase, PsycINFO and Cochrane electronic databases were searched between January 1990 and August 2015 for English-language publications describing the development or validation of measures assessing the unmet needs of adult caregivers of people with dementia. The psychometric properties of included measures were assessed against standard criteria for psychometric quality. RESULTS: Four measures met the inclusion criteria. Only half of the indices of psychometric quality were tested across measures. Three measures had adequate internal consistency reliability, of which one also showed adequate test-retest reliability. Two measures reported adequate construct validity, while criterion validity was not assessed for any measure. CONCLUSIONS: There is a clear need to develop a psychometrically rigorous instrument to identify the unmet needs of caregivers of people with dementia. Copyright © 2016 John Wiley & Sons, Ltd.

Computer and telephone delivered interventions to support caregivers of people with dementia: a systematic review of research output and quality.

BACKGROUND: To assess the scope, volume and quality of research on the acceptability, utilisation and effectiveness of telephone- and computer-delivered interventions for caregivers of people living with dementia. METHODS: Medline, EMBASE, CINAHL and Cochrane databases were searched (Jan 1990 - Dec 2016). Eligible papers were classified as data-based descriptive, measurement or intervention studies. Intervention studies were first categorised according to mode of delivery (e.g. telephone, computer); then assessed against the Effective Practice and Organisation of Care (EPOC) methodological criteria for research design. Impact on health-related outcomes; and the acceptability, feasibility and utilisation of interventions were also assessed. RESULTS: The number of publications increased by 13% each year (p < 0.001). Half were descriptive studies (n = 92, 50%) describing caregiver views on acceptability, access or utilization of technology. The remainder (n = 89, 48%) reported on interventions designed to improve caregiver outcomes. Only 34 met EPOC design criteria. Interventions were delivered via computer (n = 10), multiple modalities (n = 9) or telephone (n = 15). Interventions that incorporated various elements of psycho-education, peer support, skills training and health assessments led to improvements in caregiver wellbeing. While largely acceptable, utilisation of computer-based interventions was variable, with use often decreasing over time. CONCLUSION: Interventions delivered via telephone and computer have the potential to augment existing dementia care. High-quality trials are required to make clear recommendations about the types of interventions that are most effective. Those that provide caregivers with: access to practical strategies to manage care of the person with dementia and their own wellbeing, advice and support from peers and/or clinicians; and that target the dyad should be explored.

Assisting the bereaved: A systematic review of the evidence for grief counselling.

BACKGROUND: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous evidence-base. AIM: To examine the (1) relative proportion of descriptive, measurement and intervention research in grief counselling and (2) quality and effectiveness of intervention studies. DESIGN: Systematic review of studies published in the area of grief counselling. DATA SOURCES: MEDLINE, Embase, Cochrane Library and PsycINFO databases were searched for studies published between 2000 and 2013. Eligible papers were categorised into descriptive, measurement, review, commentaries and intervention studies. Intervention studies were assessed against the Cochrane Effective Practice and Organisation of Care methodological criteria, and papers meeting criteria were assessed for quality. The impact of interventions on grief, psychological morbidity and quality of life was examined. RESULTS: A total of 126 data-based papers, including 47 descriptive, 3 measurement and 76 grief counselling intervention studies were included. Only 59% (n = 45) of intervention studies met Effective Practice and Organisation of Care design criteria. Overall, study quality was poor, with the majority of interventions showing a risk of bias in several key areas. The three studies that met all criteria showed mixed effectiveness. CONCLUSION: Grief counselling interventions require a strong rationale for design, and a systematic approach to development and evaluation. Descriptive research efforts should inform this process, focusing on homogeneity in sample, identification of risk factors for complicated grief and the impact of extraneous factors on intervention effects. Interventions should include comparisons to usual care, as well as replication to confirm positive findings.

Wilfully out of sight? A literature review on the effectiveness of cancer-related decision aids and implementation strategies.

BACKGROUND: There is evidence to suggest that decision aids improve a number of patient outcomes. However, little is known about the progression of research effort in this area over time. This literature review examined the volume of research published in 2000, 2007 and 2014 which tested the effectiveness of decision aids in improving cancer patient outcomes, coded by cancer site and decision type being targeted. These numbers were compared with the volume of research examining the effectiveness of strategies to increase the adoption of decision aids by healthcare providers. METHODS: A literature review of intervention studies was undertaken. Medline, Embase, PsychInfo and Cochrane Database of Systematic Reviews were searched. The search was limited to human studies published in English, French, or German. Abstracts were assessed against eligibility criteria by one reviewer and a random sample of 20 % checked by a second. Eligible intervention studies in the three time periods were categorised by: i) whether they tested the effectiveness of decision aids, coded by cancer site and decision type, and ii) whether they tested strategies to increase healthcare provider adoption of decision aids. RESULTS: Over the three time points assessed, increasing research effort has been directed towards testing the effectiveness of decision aids in improving patient outcomes (p < 0.0001). The number of studies on decision aids for cancer screening or prevention increased statistically significantly (p < 0.0001) whereas the number of studies on cancer treatment did not (p = 1.00). The majority of studies examined the effectiveness of decision aids for prostate (n = 10), breast (n = 9) or colon cancer (n = 7). Only two studies assessed the effectiveness of implementation strategies to increase healthcare provider adoption of decision aids. CONCLUSIONS: While the number of studies testing the effectiveness of decision aids has increased, the majority of research has focused on screening and prevention decision aids for only a few cancer sites. This neglects a number of cancer populations, as well as other areas of cancer care such as treatment decisions. Also, given the apparent effectiveness of decision aids, more effort needs to be made to implement this evidence into meaningful benefits for patients.

Burden and Unmet Needs of Caregivers of Chronic Obstructive Pulmonary Disease Patients: A Systematic Review of the Volume and Focus of Research Output.

Caregivers of individuals with chronic obstructive pulmonary disease (COPD) experience significant burden. To develop effective interventions to support this vulnerable group, it is necessary to understand how this burden varies as a function of patient well-being and across the illness trajectory. This systematic review aimed to identify the number and type of data-based publications exploring the burden and unmet needs of caregivers of individuals with COPD. Medline, Embase, PsycINFO and Cochrane databases were searched for studies published between January 2000 and February 2014. Studies were eligible if they were quantitative studies examining unmet needs of, or burden on, adult caregivers of individuals with COPD. Eligible papers were categorised according to (i) type (i.e. descriptive, measurement and intervention studies); (ii) whether they measured associations between patient and caregiver burden and (iii) whether they measured caregiver burden longitudinally. Twenty-seven data-based papers met criteria for inclusion. There was a significant increase in the total number of publications over time. The majority of publications were descriptive studies (n = 25), with one measurement and one intervention study identified. Fourteen descriptive studies measured the relationship between patient or caregiver factors and caregiver burden. Only two studies measured caregiver burden over time. There are a number of gaps in the body of research examining burden and unmet needs of caregivers of individuals with COPD that preclude the development of effective interventions for this population. Greater research effort should be directed towards identifying rigorous measurement tools which more accurately characterise caregiver burden, so that evidence-based interventions can be developed.

Theta frontoparietal connectivity associated with proactive and reactive cognitive control processes.

Cognitive control involves both proactive and reactive processes. Paradigms that rely on reactive control have shown that frontoparietal oscillatory synchronization in the theta frequency band is associated with interference control. This study examines whether proactive control is also associated with connectivity in the same frontoparietal theta network or involves a distinct neural signature. A task-switching paradigm was used to differentiate between proactive and reactive control processes, involved in preparing to switch or repeat a task and resolving post-target interference, respectively. We confirm that reactive control is associated with frontoparietal theta connectivity. Importantly, we show that proactive control is also associated with theta band oscillatory synchronization but in a different frontoparietal network. These findings support the existence of distinct proactive and reactive cognitive control processes that activate different theta frontoparietal oscillatory networks.

Prevalence and correlates of current smoking among medical oncology outpatients.

BACKGROUND: Continued smoking following a cancer diagnosis has adverse impacts on cancer treatment and puts individuals at risk of secondary cancers. Data on the prevalence and correlates of smoking among cancer patients are critical for successfully targeting smoking cessation interventions. AIMS: To explore among a sample of medical oncology outpatients (a) the prevalence of self-reported current smoking and (b) the demographic and psychosocial factors associated with self-reported smoking. METHODS: A heterogeneous sample of cancer patients aged 18 years or over was recruited from 1 of 11 medical oncology treatment centres across Australia. Patients completed a survey assessing the following: smoking status; socio-demographic, disease and treatment characteristics; time since diagnosis; anxiety; and depression. Factors associated with self-reported smoking were examined using a univariate and multivariate mixed-effects logistic regression. RESULTS: A total of 1379 patients returned surveys and 1338 were included in the analysis. The prevalence of current smoking was 10.9% (n = 146). After adjusting for treatment centre, patients aged 65 years and older and those without health concession cards were significantly less likely to smoke. Patients diagnosed with lung cancer and those without private health insurance were more likely to smoke. DISCUSSION: A minority of cancer patients reported continued smoking at an average time of 13 months post-diagnosis. Patients, who are younger, have been diagnosed with lung cancer and have lower socioeconomic status are at-risk groups and represent important targets for smoking cessation advice and intervention. Copyright © 2015 John Wiley & Sons, Ltd.

Missed opportunities: general practitioner identification of their patients' smoking status.

BACKGROUND: In order to provide smoking cessation support to their patients in line with clinical practice guidelines, general practitioners must first ascertain whether their patients' use tobacco. This study examined (i) the sensitivity, specificity, positive predictive value and negative predictive value of general practitioner detection of smoking, and (ii) the general practitioner and patient characteristics associated with detection of tobacco use. METHODS: Eligible patients completed a touchscreen computer survey while waiting for an appointment with their general practitioner. Patients self-reported demographic characteristics, medical history, and current smoking status. Following the patient's consultation, their general practitioner was asked to indicate whether the patient was a current smoker (yes/no/unsure/not applicable). Smoking prevalence, sensitivity, specificity, positive predictive value and negative predictive values (with 95% confidence intervals) were calculated using patient self-report of smoking status as the gold standard. Generalised estimating equations were used to examine the general practitioner and patient characteristics associated with detection of tobacco use. RESULTS: Fifty-one general practitioners and 1,573 patients in twelve general practices participated. Patient self-report of smoking was 11.3% compared to general practitioner estimated prevalence of 9.5%. Sensitivity of general practitioner assessment was 66% [95% CI 59-73] while specificity was 98% [95% CI 97-98]. Positive predictive value was 78% [95% CI 71-85] and negative predictive value was 96% [95% CI 95-97]. No general practitioner factors were associated with detection of smoking. Patients with a higher level of education or who responded 'Other' were less likely to be detected as smokers than patients who had completed a high school or below level of education. CONCLUSION: Despite the important role general practitioners play in providing smoking cessation advice and support, a substantial proportion of general practitioners do not know their patient's smoking status. This represents a significant missed opportunity in the provision of preventive healthcare. Electronic waiting room assessments may assist general practitioners in improving the identification of smokers.