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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.

To assess the use of Medicare‐subsidised health services by women with and without dementia. 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. 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 [1.07, 1.13]; long [>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. 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. 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).

To examine general practitioners’ views about how health assessments for older people should be conducted. General practitioners were randomly sampled from a national database of medical practitioners and invited to complete a survey. Survey items explored general practitioners’ views about essential components of a 75+ Health Assessment and who should assess each component, consultation time, use of standardised templates and tools, and home visits. Overall, 185 (19.2%) general practitioners participated. Of 61 items presented, 24 were rated ‘essential’ by ≥70% of practitioners, with an average estimated consultation time of 65 minutes. Of the 24 essential items, it was perceived that 21 could be assessed by either a general practitioner or clinic nurse. Most practitioners indicated a standardised template (86%) and standardised tools for complex issues (79%) should be used, and home visits conducted (75%). General practitioners agreed on 24 items as essential for every health assessment, with assessments estimated to take more than one hour. Increases to remuneration for prolonged assessments or mechanisms for improving efficiency and quality of assessments are needed. Acceptable mechanisms may include standardised patient‐reported tools, standardised templates and the use of non‐medical staff to assist with assessments.

IntroductionSurgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery.Methods and analysisThe two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use.Ethics and disseminationThe trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation.Trial registration numberACTRN12621001533886.

Future medical and financial planning is important for persons with dementia given the impact of the disease on capacity for decision making. 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. 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. 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%). 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.

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.

Over recent years, cervical cancer incidence and related mortality have steadily increased in Eswatini. Low cervical cancer screening uptake partly explains the situation. Cervical cancer screening-related knowledge is positively associated with screening uptake. Little is known about women's cervical cancer screening-related knowledge in Eswatini. This study aimed to assess cervical cancer screening knowledge and associated factors among Eswatini women eligible for screening. A cross-sectional study involving three hundred and seventy-seven women aged 25 to 59 selected from four primary healthcare clinics in Eswatini was conducted. A paper and pen survey assessed knowledge about cervical cancer risk factors, benefits of screening, the meaning of screening results, recommended screening intervals, and socio-demographics. Descriptive analyses were performed to assess participants' sociodemographic characteristics. Linear regression was applied to examine associations between cervical cancer screening-related knowledge and participants' sociodemographic characteristics. Two hundred and twenty-nine (61%) participants answered 80% or more knowledge questions correctly. Compared to HIV-positive participants, HIV-negative participants had 0.61 times lower cervical cancer screening knowledge scores (β = -0.39, 95% CI: -0.56, -0.19, p = 0.03). Participants who travelled more than 30 minutes to the clinic had 0.3 times lower cervical cancer screening knowledge scores (β = -0.70, 95% CI: -1.15, -0.25, p < 0.01) compared to participants who travelled less than 30 minutes to the clinic. Relatively high overall cervical cancer screening knowledge levels were observed among the study participants. Findings from the current study may inform future educational programs to create and sustain an accurate understanding of cervical cancer screening in Eswatini communities.

Background In 2018, Eswatini had the world's highest age-standardised cervical cancer incidence rate. Cervical cancer screening reduces women’s risk of invasive cervical cancer. Data on adherence to cervical cancer screening recommendations in Eswatini are scarce. The purpose of the current study was to determine Eswatini women’s self-reported adherence to cervical cancer screening recommendations, attitudes toward screening, and factors associated with non-adherence. Methods A cross-sectional survey of women ( n  = 377) aged 25 to 59 accessing primary healthcare clinics ( n  = 4) in Eswatini assessed screening participation, attitudes and knowledge regarding cervical cancer screening, and socio-demographic variables. Adjusted logistic regression was used to assess factors associated with non-adherence to Eswatini cervical cancer screening recommendations. Results One hundred and sixty-six (44%) women were classified as adherent to cervical cancer screening recommendations. Attitudinal barriers endorsed by over one-third of participants included a perceived low risk of cervical cancer ( n  = 161, 43%) and a view that screening is likely to be painful ( n  = 146, 38%). Participants had higher odds of being classified as non-adherent if they: were single compared with married (OR = 1.78, 95% CI: 1.05, 3.01, p  = 0.03), perceived screening as likely painful (OR = 4.43, 95% CI: 2.62, 7.46, p  < 0.001); and had not been advised by a doctor/ nurse to screen (OR = 2.82, 95% CI: 1.71, 4.64, p  < 0.001). Also, a 1-year increase in age was associated with an increase in the odds of being classified as non-adherent (OR = 1.42, 95% CI: 1.39, 1.45, p  = 0.01). Conclusions Self-reported adherence was moderate among this group of women. Tailored interventions are needed to increase participation in cervical cancer screening, especially for those women with characteristics associated with being classified as non-adherent. Primary healthcare clinic nurses (and other health providers) may contribute toward improving participation in cervical cancer screening by advising eligible women to screen and providing health education addressing negative attitudes toward screening.

There have been few international comparisons of patient-centered cancer care delivery. This study aimed to compare the experiences of patient-centered care (PCC) of Japanese and Australian radiation oncology patients. Participants were adults with cancer attending a radiotherapy appointment at a Japanese or Australian clinic. Participants completed a survey asking about 10 indicators of PCC. Overall, 259 Japanese and 285 Australian patients participated. Compared with Japanese participants, Australian participants were significantly more likely to report receiving information about: what the treatment is, and the short-term and long-term side effects of treatment. A higher proportion of Australian participants reported being asked whether they wanted a friend or family member present at the consultation. There were no differences in the frequency with which Japanese and Australian participants were asked by their clinicians about whether they were experiencing physical side effects or emotional distress. International differences highlight the (1) need to exercise caution when generalizing from one country to another; and (2) the importance of context in understanding PCC delivery and the subsequent design of quality improvement interventions.

Background Advance personal planning is the process by which people consider, document and communicate their preferences for personal, financial and health matters in case they lose the ability to make decisions or express their wishes in the future. Discussion Advance personal planning is most often undertaken by individuals who are seriously ill, often in the context of a medical crisis and/or at the time of admission to hospital. However, the clinical utility and legal validity of the planning process may be compromised in these circumstances. Patients may lack sufficient capacity to meaningfully engage in advance personal planning; there may be insufficient time to adequately reflect on and discuss wishes with key others; and there may also be limited opportunity for inter-professional input and collaboration in the process. Here, we propose an agenda for research to advance the science of advance personal planning by promoting a ‘whole community’ approach. Adoption of advance personal planning at a community level may be achieved using a variety of strategies including public media campaigns, intervening with professionals across a range of health care and legal settings, and mobilising support from influential groups and local government. One potentially promising method for encouraging earlier adoption of advance personal planning among a broader population involves a community action approach, whereby multiple evidence-based strategies are integrated across multiple access points. Community action involves calling on community members, professionals, community and/or government organisations to work collaboratively to design and systematically implement intervention strategies with the aim of bringing about desired behaviour change. An example of a community action trial to improving uptake and quality of advance personal planning is described. Conclusion While promising, there is a need for rigorous evidence to demonstrate whether a community action approach is effective in establishing whole community adoption of advance personal planning.