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 .

Brain cancer patient and support persons' experiences of psychosocial care: a mapping of research outputs.

BACKGROUND: People with brain cancer and their support persons (SPs) are critical sources of information on the components of care that contribute to psychosocial outcomes. AIMS: To determine the proportion of studies that examined (1) at least one of 14 nominated components of psychosocial cancer care and (2) more than one component of care. METHODS: Medline, The Cochrane Library, PsycINFO and Embase were electronically searched for publications from January 1999 to December 2019. Publications that met the inclusion criteria were coded according to the number and type of psychosocial care components assessed from 14 listed components, and whether patient and/or SPs' views about care were elicited. RESULTS: Of the 113 included publications, 61 publications included patient-reported data only (54%), 27 included both patient and SP-reported data (24%) and 25 included SP-reported data only (22%). Most assessed a single component of care (77% of patient-reported and 71% of SP-reported). No publications assessed all 14 components. The "Psychosocial" component was the most frequently assessed component of care for patient-reported (n = 80/88, 91%) and SP-reported publications (n = 46/52, 88%). CONCLUSIONS: Publications reporting on psychosocial care in brain cancer present a relatively narrow view of patient and support person experiences. The inclusion of both patient and support person perspectives and the assessment of multiple components of care are required in future research to optimize psychosocial outcomes in brain cancer.

Psychosocial well-being of brain cancer patients and support persons: A mapping review of study types over time.

INTRODUCTION: This review examined the: (1) number of publications exploring psychosocial outcomes of adults with brain cancer and/or support persons between 1999 and 2019 and whether there has been a change in the type of research over time; and (2) proportion of intervention studies meeting Cochrane Effective Practice and Organisation of Care (EPOC) research design criteria. METHODS: Embase, The Cochrane Library, Medline and PsycINFO databases were electronically searched January 1999 to December 2019. Articles were examined against inclusion/exclusion criteria and coded into measurement, descriptive or intervention categories. Intervention studies were assessed against the EPOC design criteria. RESULTS: 220 eligible publications were identified. The number of total publications significantly increased by an average of 1 each year (95%CI = 0.7-1.3; p < 0.001). There was no significant change in the proportion of publications by study type across three time periods. Descriptive research represented the majority within each time period. Of the 17 intervention studies, only 7(41%) met EPOC design criteria. CONCLUSIONS: Published literature on brain cancer psychosocial outcomes has increased significantly. However, descriptive research dominates research output. To increase high-level knowledge that can guide psychosocial care of people with brain cancer, there is a need to undertake methodologically rigorous intervention trials.

The System for Patient Assessment of Cancer Experiences (SPACE): a cross-sectional study examining feasibility and acceptability.

BACKGROUND: Continuous quality improvement in cancer care relies on the collection of accurate data on the quality of care provided. It is suggested that such an approach should: (i) measure the patient's care experience throughout the cancer trajectory; (ii) use items and response scales that measure concrete and specific aspects of care; (iii) minimise recall bias; (iv) minimise the burden placed on patients for providing data; (v) minimise administrative burden; and (vi) collect actionable data. The System for Patient Assessment of Cancer Experiences (SPACE) was developed to meet these objectives. This study describes the feasibility and acceptability of the SPACE in a sample of oncology outpatients. METHODS: The SPACE was examined in four medical oncology centres. Adult patients were approached by a research assistant prior to their scheduled consultation. Consenting participants completed the SPACE on a computer tablet. Items were tailored to the patient's cancer treatment phase. RESULTS: Of the eligible participants, 1143 consented (83%) and 1056 completed the survey (92%). The average time taken to complete the survey was 6 min 28 s. A large proportion of the sample indicated that the survey was acceptable (88-93% across three acceptability items). CONCLUSION: This study demonstrates that the SPACE can be feasibly administered each time a patient comes to the oncology unit and is acceptable to patients. The SPACE could be used to quantify the care experiences which patients receive during their cancer care. The resulting data could be used to set benchmarks and improve the performance of cancer clinics.

Development and Validation of the MiPrep Survey: An Instrument Assessing Patients' Perceived Preparation for Medical Interventions Including Medical Imaging, Radiotherapy, and Surgery.

BACKGROUND: Adequately preparing patients for medical interventions is an important component of quality healthcare. Nevertheless, few instruments for assessing patients' preparation exist. OBJECTIVES: To develop a psychometrically rigorous instrument to assess patients' perceptions of the quality of preparation. METHODS: An instrument to measure patients' preparation for medical interventions (MiPrep) was developed and tested with patients undergoing medical imaging, radiotherapy, or surgery. Patients were recruited and asked to complete 2 surveys. Survey A assessed patient and intervention characteristics. Survey B (postintervention) contained MiPrep to assess validity (face, content, and construct) and reliability (internal consistency and test-retest). RESULTS: A total of 869 (85%) patients consented to participate and 551 (63%) returned the postintervention survey. Face and content validity were demonstrated. Exploratory factor analysis identified 2 survey modules: receipt and adequacy of information (2 domains) and overall appraisal of patient-centered care (1 domain). Reliability was evidenced by adequate internal consistency (Cronbach α 0.81-0.89) and item-total correlations higher than 0.20. Nevertheless, individual item test-retest reliability requires further confirmation. The final instrument contained 27 items. CONCLUSIONS: The MiPrep instrument has evidence of being a valid and reliable instrument of preparation for medical interventions. Healthcare providers can use the instrument as a quality assurance tool to identify areas for improvement and areas of excellence in patients' preparation. Future studies should verify these findings in other populations and examine the divergent and predictive validity of the instrument.

A clinician-centred programme for behaviour change in the optimal use of staging investigations for newly diagnosed prostate cancer.

OBJECTIVES: To improve imaging utilisation and reduce the widespread overuse of staging investigations, in the form of computed tomography (CT) and whole-body bone scans for men with newly diagnosed prostate cancer in the Hunter region of NSW, Australia, by implementation of a multifaceted clinician-centred behaviour change programme. PATIENTS AND METHODS: Records of all patients with a new diagnosis of prostate cancer were reviewed prior to the intervention (July 2014 to July 2015), and the results of this audit were presented to participating urologists by a clinical champion. Urologists then underwent focused education based on current guidelines. Patterns of imaging use for staging were then re-evaluated (November 2015 to July 2016). Patients were stratified into low-, intermediate- and high-risk groups as described by the D'Amico classification system. RESULTS: A total of 144 patients were retrospectively enrolled into the study cohort. The use of diagnostic imaging for staging purposes significantly decreased in men with low- and intermediate-risk disease post intervention. In low-risk patients, the use of CT decreased from 43% to 0% (P = 0.01). A total of 21% of patients underwent bone scans in the pre-intervention group compared with18% in the post-intervention group (P = 0.84). In intermediate-risk patients, the use of CT decreased from 89% to 34% (P < 0.001), whilst the use of bone scan decreased from 63% to 37% (P = 0.02). In high-risk patients, the appropriate use of imaging was maintained, with CT performed in 87% compared with 85% and bone scan in 87% compared with 65% (P = 0.07). CONCLUSION: Our results show that a focused, clinician-centred education programme can lead to improved guideline adherence at a regional level. The assessment of trends and application of such a programme at a state-based or national level could be further assessed in the future with the help of registry data. This will be particularly important in future with the advent of advanced imaging, such as prostate-specific membrane antigen positron-emission tomography.

Consumer input into health care: Time for a new active and comprehensive model of consumer involvement.

BACKGROUND: To ensure the provision of patient-centred health care, it is essential that consumers are actively involved in the process of determining and implementing health-care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health-care improvements. OBJECTIVES: We propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health-care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes.

Testing for type 2 diabetes in Indigenous Australians: guideline recommendations and current practice.

OBJECTIVES: To determine the proportion of Aboriginal Controlled Community Health Service (ACCHS) patients tested according to three national diabetes testing guidelines; to investigate whether specific patient characteristics were associated with being tested. DESIGN, SETTING AND PARTICIPANTS: Cross-sectional study of 20 978 adult Indigenous Australians not diagnosed with diabetes attending 18 ACCHSs across Australia. De-identified electronic whole service data for July 2010 - June 2013 were analysed. MAIN OUTCOMES MEASURES: Proportions of patients appropriately screened for diabetes according to three national guidelines for Indigenous Australians: National Health and Medical Research Council (at least once every 3 years for those aged 35 years or more); Royal Australian College of General Practitioners and Diabetes Australia (at least once every 3 years for those aged 18 years or more); National Aboriginal Community Controlled Health Organisation (annual testing of those aged 18 years or more at high risk of diabetes). RESULTS: 74% (95% CI, 74-75%) of Indigenous adults and 77% (95% CI, 76-78%) of 10 760 patients aged 35 or more had been tested for diabetes at least once in the past 3 years. The proportions of patients tested varied between services (range: all adults, 16-90%; people aged 35 years or more, 23-92%). 18% (95% CI, 18-19%) of patients aged 18 or more were tested for diabetes annually (range, 0.1-43%). Patients were less likely to be tested if they were under 50 years of age, were transient rather than current patients of the ACCHS, or attended the service less frequently. CONCLUSIONS: Some services achieved high rates of 3-yearly testing of Indigenous Australians for diabetes, but recommended rates of annual testing were rarely attained. ACCHSs may need assistance to achieve desirable levels of testing.

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.

Prevalence and associates of psychological distress in haematological cancer survivors.

PURPOSE: To explore outcomes of psychological distress, including anxiety, depression and stress, amongst adult haematological cancer survivors, with a specific focus on potential differences between rural and urban survivors. METHODS: One thousand four hundred fourteen urban and rural survivors were recruited from five Australian population-based cancer registries and completed a self-report pen-and-paper survey on their well-being, including the Depression Anxiety and Stress Scale 21-item version. RESULTS: A quarter of survivors were identified as reporting above normal levels of anxiety and depression, respectively, and almost one fifth (17 %) reported above normal levels of stress. There were no statistically significant differences in the percentage of rural and urban survivors reporting above normal levels of anxiety, depression, or stress. Survivors who had experienced financial burden due to their cancer or were of middle age had higher odds of reporting multiple domains of psychological distress, compared to their counterparts. CONCLUSIONS: Haematological cancer survivors diagnosed during middle age or who experience increased financial burden as a result of their diagnosis may require additional support and care with regards to psychological distress.

What is generated and what is used: a description of public health research output and citation.

The aim of this short report was to describe the output and citation rates of public health. Data-based publications and literature reviews from the year 2008, and their 5-year citation rates were extracted from 10 randomly selected public health journals. In total, 86.2% of publications were descriptive/epidemiological studies, 56.8% used cross-sectional (56.8%) designs and 77.8% were classified as research translation stage 2. Reviews and publications describing randomized controlled trials were the most highly cited, but were infrequently published. Strategies to address the discordance between public health research output and research citation may improve the impact of public health research.

Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy.

BACKGROUND: Information about the unmet supportive care needs of haematological cancer patients is needed for service planning and to inform clinical practice. This study described the prevalence of, and factors associated with, unmet supportive care needs among haematological cancer patients. MATERIAL AND METHODS: A total of 380 adults diagnosed with haematological cancer were recruited from the outpatient department at three comprehensive cancer treatment centres in Australia. Of these, 311 completed a self-report questionnaire. Unmet needs were assessed using the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using descriptive statistics and logistic regression. RESULTS: Overall, 51% (95% CI 45-57%) of participants reported having at least one 'moderate to high' level unmet need, while 25% (95% CI 20-30%) reported 'no need' for help with any items. Unmet needs were most commonly reported in the psychological (35%; 95% CI 30-41%) and physical aspects of daily living (35%; 95% CI 30-41%) domains. The three most frequently endorsed items of 'moderate to high' unmet need were: lack of energy/tiredness (24%; 95% CI 20-30%), not being able to do the things you used to do (21%; 95% CI 17-26%), and uncertainty about the future (21%; 95% CI 16-25%). Patients' sociodemographic characteristics influenced unmet needs more than disease characteristics. Patients who were female, aged less than 55 years or not in the labour force had higher odds of reporting 'moderate to high' level unmet supportive care needs. CONCLUSION: Unmet supportive care needs are prevalent among haematological cancer patients, particularly in the psychological and physical aspects of daily living domains. These findings provide valuable insight about the range of resources, multidisciplinary linkages and referral pathways needed to address haematological cancer patients' unmet needs.

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients.

OBJECTIVES: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients' perceptions of whether they received too little, too much, or the right amount of information about life expectancy. DESIGN: Cross-sectional survey. SETTING: Eleven large Australian medical oncology treatment centres. PARTICIPANTS: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014. MAIN OUTCOME MEASURES: Patients indicated whether the information about life expectancy they received aligned with their preferences. RESULTS: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42). CONCLUSIONS: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail.

Prevalence of FOB testing in eastern-Australian general practice patients: what has a national bowel cancer screening program delivered?

ISSUES ADDRESSED: The National Bowel Cancer Screening Program (NBCSP) was introduced in Australia in 2006, offering free immunochemical Faecal Occult Blood Test (FOBT) to persons aged 50, 55 or 65. The study aimed to examine the prevalence of self-reported screening for colorectal cancer (CRC) using the FOBT and factors associated with not having an FOBT. METHODS: A cross-sectional study of Australian general practice patients aged 50 and over with no personal history of CRC completed a health risk survey while waiting for scheduled appointments between November 2010 and November 2011. RESULTS: A total of 5671 patients from 12 practices were approached to participate. Of the 4707 eligible patients (adults attending for care who understood English and were capable of providing informed consent), 4062 (86%) consented to participate, with 2269 eligible to complete the FOBT items. Approximately half (52%) of participants reported ever having an FOBT. More than one-third (39.7%) of the sample reported having an FOBT in the prior three years. Those who recalled receiving a mailed kit as part of the NBCSP were five times more likely to report being screened. Those less likely to report screening were aged 50-59 years, were female and had been diagnosed with a form of cancer other than CRC. CONCLUSIONS: There is justification for the extension of the NBCSP to ensure a majority of the age-appropriate population is screened for CRC. SO WHAT?: Further work is needed to identify whether high rates of screening are achievable using the mailed-kit approach, and how to increase participation by females, those aged 50-69 years and those diagnosed with other cancers.

Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS).

PURPOSE: The Survivor Unmet Needs Survey (SUNS) is one of the only unmet needs measures that was developed and evaluated utilising a population-based sample of cancer survivors. At 89 items, the current scale is quite burdensome. The current study aimed to develop a valid and reliable short version of this survey. METHODS: A heterogeneous sample of 1,589 cancer survivors, aged 19 years or over at diagnosis, diagnosed with a histologically confirmed cancer in the previous 12 to 60 months, completed the SUNS. Using these data, we employed a combined theoretical and statistical method of reducing the number of items in the SUNS. The shortened survey was examined for construct validity, internal consistency, discriminant validity and floor and ceiling effects. RESULTS: Fifty-nine items were removed. Construct validity closely reflected the original structure of the SUNS. However, all items from the Emotional health and Relationships domains loaded onto one factor. Cronbach's alpha for the final four domains were 0.85 or above, demonstrating strong internal consistency. Intra-class correlations of the three domains from the original survey (Financial concerns, Information and Access and continuity of care) and shortened survey were high (>0.9). Discriminant validity illustrated the short-form SUNS' ability to discriminate between those who had recently received treatment and those who had not. CONCLUSIONS: This study describes the development and psychometric evaluation of the short-form SUNS (SF-SUNS). Future studies should confirm the test-retest reliability and predictive validity of the SF-SUNS utilising large, independent, population-based samples of cancer survivors.

Keeping the 'goose' on the menu: response to commentaries on financial incentives in health behaviour change.

We welcome the commentaries by Hagger et al.and Stephens and consider their observations to be timely and constructive. Hagger et al. raise concerns regarding the sustainability of behaviour change once incentives have been removed and their influence on intrinsic motivation. We concur that questions regarding both of these issues remain but argue that, in the case of sustainability, there is some evidence to support long-term behaviour change, given particular conditions. Given that the question of maintenance is applicable to any health intervention, we propose that the role of incentives may be better matched with motivating initial behaviour change, and researchers should explore other mechanisms for sustaining behaviour change and intrinsic motivation, over a longer period of time. Stephens highlights the complexity of health behaviours and warns of the dangers associated with taking an individualised approach to health promotion. We support the need for both downstream and upstream approaches to reducing health inequalities and contend that financial incentives still have a potential role to play in encouraging health behaviour change.

Keeping the 'Goose' on the Menu: Response to Commentaries on Financial Incentives in Health Behaviour Change.

We welcome the commentaries by Hagger et al. and Stephens and consider their observations to be timely and constructive. Hagger et al. raise concerns regarding the sustainability of behaviour change once incentives have been removed and their influence on intrinsic motivation.We concur that questions regarding both of these issues remain but argue that, in the case of sustainability, there is some evidence to support long-term behaviour change, given particular conditions. Given that the question of maintenance is applicable to any health intervention, we propose that the role of incentives may be better matched with motivating initial behaviour change, and researchers should explore other mechanisms for sustaining behaviour change and intrinsic motivation, over a longer period of time.Stephens highlights the complexity of health behaviours and warns of the dangers associated with taking an individualised approach to health promotion.We support the need for both downstream and upstream approaches to reducing health inequalities and contend that financial incentives still have a potential role to play in encouraging health behaviour change.

Supporting pregnant Aboriginal and Torres Strait Islander women to quit smoking: views of antenatal care providers and pregnant indigenous women.

To assess support for 12 potential smoking cessation strategies among pregnant Australian Indigenous women and their antenatal care providers. Cross-sectional surveys of staff and women in antenatal services providing care for Indigenous women in the Northern Territory and New South Wales, Australia. Respondents were asked to indicate the extent to which each of a list of possible strategies would be helpful in supporting pregnant Indigenous women to quit smoking. Current smokers (n = 121) were less positive about the potential effectiveness of most of the 12 strategies than the providers (n = 127). For example, family support was considered helpful by 64 % of smokers and 91 % of providers; between 56 and 62 % of smokers considered advice and support from midwives, doctors or Aboriginal Health Workers likely to be helpful, compared to 85-90 % of providers. Rewards for quitting were considered helpful by 63 % of smokers and 56 % of providers, with smokers rating them more highly and providers rating them lower, than most other strategies. Quitline was least popular for both. This study is the first to explore views of pregnant Australian Indigenous women and their antenatal care providers on strategies to support smoking cessation. It has identified strategies which are acceptable to both providers and Indigenous women, and therefore have potential for implementation in routine care. Further research to explore their feasibility in real world settings, uptake by pregnant women and actual impact on smoking outcomes is urgently needed given the high prevalence of smoking among pregnant Indigenous women.

Do we get it right? Radiation oncology outpatients' perceptions of the patient centredness of life expectancy disclosure.

OBJECTIVE: A patient-centred approach to discussing life expectancy with cancer patients is recommended in Western countries. However, this approach to eliciting and meeting patient preferences can be challenging for clinicians. The aims of this study were the following: (i) to examine cancer patients' preferences for life expectancy disclosure; and (ii) to explore agreement between cancer patients' preferences for, and perceived experiences of, life expectancy disclosure. METHODS: Cancer patients undergoing radiotherapy treatment in metropolitan Australia completed a cross-sectional touchscreen computer survey including optional questions about their life expectancy disclosure preferences and experiences. RESULTS: Of the 208 respondents, 178 (86%) indicated that they would prefer their clinician to ask them before discussing life expectancy, and 30 (14%) indicated that they would prefer others (i.e. clinicians, family) to decide whether they were given life expectancy information. Of the 175 respondents who were classified as having a self- determined or other-determined disclosure experience, 105 (60%) reported an experience of life expectancy disclosure that was in accordance with their preferences. Cohen's κ was -0.04 (95% CI, -0.17, 0.08), indicating very poor agreement between patients' preferences for and perceived experiences of life expectancy disclosure (p = 0.74). CONCLUSIONS: In light of patient-centred prognosis disclosure guidelines, our findings of a majority preference for, and experience of, a self-determined approach to life expectancy disclosure amongst radiation oncology patients are encouraging. However, poor agreement between preferences and experiences highlights that additional effort from clinicians is required in order to achieve a truly patient-centred approach to life expectancy disclosure.