Evidence-based care for older people with colorectal cancer: a grey area

Colorectal cancer is primarily a disease of ageing. There is evidence that older patients are less likely to receive guideline-recommended treatment than younger patients based on their age alone. However, treatment decision-making for this group can be complex. This thesis presents a series of studies that explore the barriers to evidence-based care of older people with colorectal cancer in New South Wales (NSW), with a focus on the receipt of adjuvant chemotherapy and radiotherapy. Chapter 1 provides an introduction to the role of age in cancer care and outcomes. Chapter 2 examines issues in the measurement of patient-reported outcomes that may affect the care that older patients receive. Chapter 3 establishes current levels of adjuvant therapy use for colorectal cancer in NSW and identifies that patient age alone continues to impact treatment receipt. Surgeon knowledge and views and patient preferences for adjuvant therapy are explored in Chapters 4 and 5. A risk model that could be used by clinicians to assist treatment decision-making is developed in Chapter 6. The final chapter discusses implications of the work for clinical practice and for the future research that is needed to ensure greater understanding and improved outcomes for older people with colorectal cancer

CESR Technical Report 1: The quality and usefulness of the NSW Clinical Cancer Registry Minimum Dataset and Colorectal Dataset Extension for colorectal cancer services research

Colorectal cancer is one of the most common cancers worldwide. Population-based studies of care and outcomes are essential to monitor the uptake of evidence-based treatment guidelines and identify groups most at risk of receiving suboptimal care or experiencing poor outcomes. With the development of locally-managed Clinical Cancer Registries (ClinCR) in public facilities in NSW since 2006, ‘patterns of care’ studies which previously relied on the collection of clinical information through time- and resource-intensive surveys or medical record audits now have the potential to be conducted through linkage of routinely collected data. However there is little experience with the use of ClinCR data for research. The purpose of this report is to assess the quality, coverage and completeness of ClinCR data for use in colorectal cancer services research, and to assess the feasibility of developing surgical process and outcomes indicators that rely on ClinCR data items.Cancer Institute NS

A comprehensive overview of social network measures for older adults : a systematic review

Objectives: The size and type of older adults' social networks is associated with health, mental and social outcomes. Investigators within many disciplines are now measuring social networks, but it is not always clear what they are assessing, or which measures may best meet their objectives. To undertake a systematic review to identify (i) social network measures used for older adults, (ii) variety of social network dimensions and (iii) how measures have developed over time. Materials and Methods: The MEDLINE, EMBASE, CINAHL, PsycInfo and Cochrane Library databases were systematically searched to identify social network instruments, followed by categorization of the domains into quantitative, qualitative and alter domains. Results: A total of 229 studies and 21 social network measures were included, with 11 quantitative dimensions (e. g., size, frequency), 5 qualitative dimensions (e.g., support satisfaction, emotional bond) and 7 alter members (e. g., family, neighbours) of social networks identified. Measures commonly clustered on quantifiable network size (n = 19), availability of supportive networks (n = 14) and presence of family ties (n = 21). The period between 1985 and 1995 produced the greatest number of newly developed social network measures (n = 10) with a stronger focus on qualitative features. Discussion and Implications: This review provides researchers with an organized summary of measures and dimensions for consideration when appraising social connections in older adults. This can enable better study design through providing information that makes explicit inevitable trade-offs between survey length, comprehensiveness of dimension coverage, and utilization of the measure for researchers

Quality of life measurement in community-based aged care : understanding variation between clients and between care service providers

Background: Measuring person-centred outcomes and using this information to improve service delivery is a challenge for many care providers. We aimed to identify predictors of QoL among older adults receiving community-based aged care services and examine variation across different community care service outlets. Methods: A retrospective sample of 1141 Australians aged ≥60 years receiving community-based care services from a large service provider within 19 service outlets. Clients’ QoL was captured using the ICEpop CAPability Index. QoL scores and predictors of QoL (i.e. sociodemographic, social participation and service use) were extracted from clients’ electronic records and examined using multivariable regression. Funnel plots were used to examine variation in risk-adjusted QoL scores across service outlets. Results: Mean age was 81.5 years (SD = 8) and 75.5% were women. Clients had a mean QoL score of 0.81 (range 0– 1, SD = 0.15). After accounting for other factors, being older (p < 0.01), having lower-level care needs (p < 0.01), receiving services which met needs for assistance with activities of daily living (p < 0.01), and having higher levels of social participation (p < 0.001) were associated with higher QoL scores. Of the 19 service outlets, 21% (n = 4) had lower mean risk-adjusted QoL scores than expected (< 95% control limits) and 16% (n = 3) had higher mean scores than expected. Conclusion: Using QoL as an indicator to compare care quality may be feasible, with appropriate risk adjustment. Implementing QoL tools allows providers to measure and monitor their performance and service outcomes, as well as identify clients with poor quality of life who may need extra support

Staff perceptions following a training programme about reducing psychotropic medication use in adults with intellectual disability : the need for a realistic professional practice framework

Background: Adults with intellectual disability are at higher risk of being administered psychotropic medications. The UK-developed SPECTROM (Short-term PsychoEducation for Carers To Reduce Over Medication of people with intellectual disabilities) training programme educates disability support workers on psychotropic medications and alternatives to these medications. Method: Interviews were conducted with 10 participants who took part in the pilot SPECTROM training programme to elicit their views on the programme and its appropriateness in an Australian context. Results: The key theme was ‘Need for a psychotropic medication practice framework’. Four sub-themes were Broad satisfaction with the SPECTROM training programme; Disability support workers acknowledging the limitations of their scope of practice; Empowering training through prescriptive and reflective methods and; Need for future mentoring from Multi-Disciplinary Team members in the application of new knowledge. Conclusions: Participants felt that whilst they could improve their knowledge and attitudes surrounding psychotropic medication administration for behaviours of concern through SPECTROM training, a national practice framework is needed to execute its goals at scale

Short-Term Psycho-Education for Caregivers to Reduce Overmedication of People with Intellectual Disabilities (SPECTROM): An Australian Feasibility Study

Many people with intellectual disability display behaviours of concern. Oftentimes, these are managed using a range of approaches that includes the use of psychotropic medications even though the person does not have a psychiatric diagnosis. Finding ways to reduce the use of psychotropic medication is important, and disability support workers play an important role in achieving this goal. This study trained disability support workers about psychotropic medications and alternatives to them using the SPECTROM training program and resources. Data collected included measuring disability support workers' knowledge and attitude, in addition to exploring the appropriateness of the training program. Although disability support workers' knowledge increased after the training program, their attitudes did not change. The SPECTROM training program is feasible in the Australian context despite the need for an Australian practice framework in this area

At the grassroots of home and community-based aged care : strategies for successful consumer engagement

Objectives (1) To describe the processes used to plan and conduct a stakeholder forum in aged care as a means of informing future uptake of consumer participatory research. (2) To discuss how capturing and drawing on stakeholders' experiences of aged care can generate new research ideas and inform the delivery of more person-centred aged care services. Key principles of consumer engagement A stakeholder forum was conducted as part of Ageing Well, a 2-year project evaluating the value and impact of social participation and quality of life tools as part of routine community aged care assessments at a large Australian provider. The forum was codesigned with community aged care clients and care coordinators and aimed to coproduce implementation strategies with a targeted representation of stakeholders. The stakeholder forum was developed using five key principles of consumer engagement activities: purposeful, inclusive, timely, transparent and respectful. The forum fostered an environment of mutual respect and collective inquiry to encourage contributions from all participants. This article outlines practical guidance on using a consumer engagement framework and the lessons learnt. Discussion The stakeholder forum facilitated an understanding of consumers' needs and existing gaps in aged care services and the circumstances that can enable or hinder the delivery and implementation of these services. This collective information can guide future research and policy at institutional, regional and national committees that relate to aged care

The use of predictive fall models for older adults receiving aged care, using routinely collected electronic health record data : a systematic review

Background: Falls in older adults remain a pressing health concern. With advancements in data analytics and increasing uptake of electronic health records, developing comprehensive predictive models for fall risk is now possible. We aimed to systematically identify studies involving the development and implementation of predictive falls models which used routinely collected electronic health record data in home-based, community and residential aged care settings. Methods: A systematic search of entries in Cochrane Library, CINAHL, MEDLINE, Scopus, and Web of Science was conducted in July 2020 using search terms relevant to aged care, prediction, and falls. Selection criteria included English-language studies, published in peer-reviewed journals, had an outcome of falls, and involved fall risk modelling using routinely collected electronic health record data. Screening, data extraction and quality appraisal using the Critical Appraisal Skills Program for Clinical Prediction Rule Studies were conducted. Study content was synthesised and reported narratively. Results: From 7,329 unique entries, four relevant studies were identified. All predictive models were built using different statistical techniques. Predictors across seven categories were used: demographics, assessments of care, fall history, medication use, health conditions, physical abilities, and environmental factors. Only one of the four studies had been validated externally. Three studies reported on the performance of the models. Conclusions: Adopting predictive modelling in aged care services for adverse events, such as falls, is in its infancy. The increased availability of electronic health record data and the potential of predictive modelling to document fall risk and inform appropriate interventions is making use of such models achievable. Having a dynamic prediction model that reflects the changing status of an aged care client is key to this moving forward for fall prevention interventions

Data Resource Profile: Seeding Success: a cross-sectoral data resource for early childhood health and development research in Australian Aboriginal and non-Aboriginal children

This work was supported by an Australian National Health and Medical Research Council (NHMRC) Project Grant (#1061713). K.F. was supported by an NHMRC Early Career Fellowship (#1016475) and an NHMRC capacity building grant (#573122). E.B. was supported by an NHMRC Senior Research Fellowship (#1042717). S.E. was supported by an NHMRC Career Development Fellowship (#1013418). M.B. was supported by the Manitoba Center for Health Policy Population-Based Child Health Research Award. S.G. was supported by an NHMRC Career Development Fellowship (#1082922)