Ethical and legal aspects of research involving older people with cognitive impairment: A survey of dementia researchers in Australia

© 2019 Elsevier Ltd People with dementia are under-represented in clinical research, in part due to the ethical and legal complexities of involving people in studies who may lack capacity to consent. Excluding this population from research limits the evidence to inform care. The attitudes and practices of researchers are key to the inclusion of people with dementia in research, however, there are few empirical studies on researchers' perspectives in this area. A cross-sectional study involved researchers in Australia who had experience in the ethical aspects of conducting dementia-related studies with human participants (n = 70). Data were collected via an online survey from November 2017 to January 2018. Most respondents (97%) agreed with the importance of including people at all stages of dementia in research, yet around three-quarters of respondents perceived ethical and legal rules and processes as unduly restrictive or time-consuming. Researchers reported variable practices in assessing prospective participants' capacity to consent to their studies. Various tools are used for this purpose, ranging from tools designed for research (eg, MacArthur Competence Assessment Tool for Clinical Research) to more general cognitive function screens (eg, Mini Mental State Exam). Few respondents (14%) routinely exclude people from studies who are unable to give their own consent, but instead seek permission from proxy decision-makers, such as legally appointed guardians or family carers. Respondents reported positive and negative outcomes of ethics review processes. Positive outcomes included strengthening the protections for participants with cognitive impairment while negative outcomes included delays and inconsistent decisions from different ethics committees. The findings suggest a need for improved strategies in the research context to assess and enhance the decision-making capacity of people with dementia to support appropriate opportunities for inclusion. Education for ethics committees, proxy decision-makers and other gatekeepers is also needed to reduce barriers to participation in research

Aboriginal health: Agreement between general practitioners and patients on their health risk status and screening history

Objective: To examine agreement between patients' self-report and general practitioners' perception of their patients' health risk status and screening history. Methods: Patients attending an Aboriginal Community Controlled Health Service self-reported via survey their health risk status and screening history, while waiting to see their general practitioner (GP). Following the consultation the GP completed a corresponding survey. Prevalence rates and rates of agreement using the kappa statistic were calculated for both self-reported and GP-reported risk status for smoking, at-risk alcohol consumption and physical inactivity; and screening history for blood pressure, cholesterol, diabetes and cervical cancer. Results: Prevalence rates of health risks were similar from self-report versus GP-reported, yet differed on screening history. Patients who identified themselves as being at risk were often not the same as those identified by GPs. Agreement between patient and doctor was substantial for smoking, yet poor for at-risk alcohol consumption and physical inactivity. Agreement was fair for cholesterol and cervical cancer screening, and slight for blood pressure and diabetes screening. Conclusions and implications: This study suggests that for effective preventive care, using self-report for some health risks may be reliable, but less so for screening history. Greater assistance is needed in primary health care settings to identify patients who are at risk

The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

BACKGROUND Relevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors. METHODS The relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18-80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability. RESULTS Results from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach's alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains. CONCLUSIONS The SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.This project was co-funded by beyondblue and Cancer Australia (Grant ID:569290). Miss Hall was funded by an Australian Postgraduate Award and was previously funded by a 2012 Asia Australia Prime Minister’s Endeavour Award. Dr Flora Tzelepis was supported by a Leukaemia Foundation of Australia and Cure Cancer Australia Foundation Post-Doctoral Research Fellowship

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

<p>Abstract</p> <p>Background</p> <p>Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group.</p> <p>Methods</p> <p>Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability.</p> <p>Results</p> <p>The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60.</p> <p>Conclusions</p> <p>The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a larger sample are recommended to confirm the factor structure of the measure. Longitudinal studies to establish responsiveness and predictive validity should also be undertaken.</p

Effectiveness of interventions utilising telephone follow up in reducing hospital readmission within 30 days for individuals with chronic disease: a systematic review

Background: Rates of readmission to hospital within 30 days are highest amongst those with chronic diseases. Effective interventions to reduce unplanned readmissions are needed. Providing support to patients with chronic disease via telephone may help prevent unnecessary readmission. This systematic review aimed to determine the methodological quality and effectiveness of interventions utilising telephone follow up (TFU) alone or in combination with other components in reducing readmission within 30 days amongst patients with cardiovascular disease, chronic respiratory disease and diabetes. Methods: A systematic search of MEDLINE, the Cochrane Library and EMBASE were conducted for articles published from database inception to 19th May 2015. Interventions which included TFU alone, or in combination with other components, amongst patients with chronic disease, reported 30 day readmission outcomes and met Effective Practice and Organisation of Care design criteria were included. The titles and abstracts of all identified articles were initially assessed for relevance and rejected on initial screening by one author. Full text articles were assessed against inclusion criteria by two authors with discrepancies resolved through discussion. Results: Ten studies were identified, of which five were effective in reducing readmissions within 30 days. Overall, the methodological quality of included studies was poor. All identified studies combined TFU with other intervention components. Interventions that were effective included three studies which provided TFU in addition to pre-discharge support; and two studies which provided TFU with both pre- and post-discharge support which included education, discharge planning, physical therapy and dietary consults, medication assessment, home visits and a resident curriculum. There was no evidence that TFU and telemedicine or TFU and post-discharge interventions was effective, however, only one to two studies examined each of these types of interventions. Conclusions: Evidence is inconclusive for the effectiveness of interventions utilising TFU alone or in combination with other components in reducing readmissions within 30 days in patients with chronic disease. High methodological quality studies examining the effectiveness of TFU in a standardised way are needed. There is also potential importance in focusing interventions on enhancing provider skills in patient education, transitional care and conducting TFU

What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs

BACKGROUND: This study aimed to identify the most prevalent unmet needs of haematological cancer survivors. METHODS: Haematological cancer survivors aged 18–80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported “high/very high” unmet needs items were identified, as well as characteristics associated with the three most prevalent “high/very high” unmet needs reported by haematological cancer survivors. RESULTS: A total of 715 eligible survivors returned a completed survey. “Dealing with feeling tired” (17%), was the most frequently endorsed “high/very high” unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of financial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identified as characteristics associated with the three most prevalent “high/very high” unmet needs. CONCLUSIONS: A minority of haematological cancer survivors endorsed a “high/very high” unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased financial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent “high/very high” unmet needs identified by this study.This project was co-funded by beyondblue and Cancer Australia (Grant ID: 569290)

Use of medical services by older Australian women with dementia : a longitudinal cohort study

Objective: To assess the use of Medicare-subsidised health services by women with and without dementia. Methods: Data from women of the 1921–26 birth cohort of the Australian Longitudinal Study on Women's Health were linked to various administrative datasets to ascertain dementia diagnosis. The use of subsidised general practitioner (GP) services (75+ health assessments [HAs], chronic disease management meetings [CDMs], multidisciplinary case conferences [MCCs]) and specialist and allied health services between 2000 and 2013 for these women was analysed using longitudinal GEE models. Results: A total of 9,683 women were included with 1,444 (15%) women identified as having dementia. Compared to women with no dementia indication, women with dementia had more yearly non-emergency GP attendances (short [30 minutes] IRR=1.11 [1.04, 1.19]) and fewer specialist attendances (IRR=0.91 [0.85, 0.97]) and were more likely to have an emergency GP attendance (OR=2.29 [2.05, 2.57]). There were no significant differences in the odds of having either a HA or CDM or using allied health services for women with and without dementia indicators. Conclusions: The overall use of services designed to improve the prevention and coordination of the care of older people with chronic conditions was low. Women with dementia were no more likely to access these services. Implications for public health: There is underuse of some primary and allied healthcare services designed for people with complex chronic conditions. These could be better used by women with dementia to improve the management of complex comorbidities (e.g. CDMs), to prevent the onset of disability (e.g. physiotherapy), and enhance needs assessment and service access (e.g. HAs). © 2021 The Authors. **Please note that there are multiple authors for this article therefore only the name of the first 5 including Federation University Australia affiliate “Colette Browning” is provided in this record*