Do Australian state and territory cancer plans include survivorship-related objectives and propose quality survivorship outcomes and measures?

Objective This study reviewed Australian jurisdictional cancer plans to: (i) assess alignment of survivorship-related objectives with recommendations from the 2006 US Institute of Medicine (IOM) survivorship report, and (ii) identify objectives in assessing survivorship outcomes. Methods Current government cancer plans were identified and reviewed for inclusion of survivorship-related objectives, which were coded based on alignment with the 10 IOM recommendations, as well as content relating to outcome assessment and measurement. Results Twelve policy documents were identified from seven Australian states and territories. There was variability in the number of IOM recommendations addressed (between 3 and 8 of 10), the number of survivorship-related objectives (between 4 and 37 per jurisdiction) and the number of survivorship-related outcomes (between 1 and 25 per jurisdiction). Recommendations for raising awareness of survivorship, quality measures and models of survivorship care were more consistently addressed in jurisdictional plans. Recently updated plans appeared to have more survivorship-focused objectives. The importance of measuring survivorship outcomes was highlighted in all 12 cancer plans. Quality of life, other patient reported outcomes, and 5-year survival rates were the most commonly suggested outcomes. There was no consensus on metrics to assess survivorship outcomes, and little detail regarding how to measure proposed outcomes. Conclusion Almost all jurisdictions included survivorship-focused objectives within cancer plans. There was considerable variation in (i) alignment with IOM recommendations, and (ii) focus on survivorship-related objectives, outcomes and outcome measures. Opportunity exists for collaboration and harmonisation of work to develop national guidelines and standards of quality survivorship care.

Organisational and advance care planning program characteristics associated with advance care directive completion: a prospective multicentre cross-sectional audit among health and residential aged care services caring for older Australians.

BACKGROUND: Advance care planning (ACP) and advance care directive (ACD) completion improve outcomes for patients, family, clinicians and the healthcare system. However, uptake remains low. Despite increasing literature regarding organisational-level ACP characteristics leading to success, there is a lack of data measuring the impact of these factors on ACD prevalence. METHODS: A prospective multi-centre, cross-sectional audit of health records among older Australians accessing general practices (GP), hospitals and residential aged care facilities (RACF) was undertaken to describe organisational and ACP-program characteristics across services, document ACD prevalence, and assess organisation-level predictors of ACD prevalence. Organisational-level data included general and ACP-program characteristics. Patient/resident data included demographics and presence of ACDs. RESULTS: One hundred organisations (GP = 15, hospitals = 27, RACFs = 58) participated, contributing data from 4187 patient/resident health records. Median prevalence of ACDs across organisations was 19.4%, (range = 0-100%). In adjusted models, organisational sector type was the strongest predictor of ACD prevalence, with higher rates in RACFs (unadjusted 28.7%, adjusted 20.6%) than hospitals (unadjusted 6.4%, adjusted 5.8%) or GPs (unadjusted 2.5%, adjusted 6.6%). RACFs in regional and rural/remote areas had higher prevalence than metropolitan organisations. Organisations supported by government funding and those that were Not For Profit had higher prevalence than those that were privately funded, and organisations with an ACP program that had been implemented at least 3 years before data collection had higher prevalence than those with either no program or a more recent program. CONCLUSIONS: The median ACD prevalence was low, with substantial variation across organisations. Sector type was the strongest predictor, being highest in RACFs. Low prevalence rates, overall and in particular sectors, have implications for improvements. Further research into organisational factors associated with ACP/ACD completion is required.

How Do We Define and Measure Optimal Care for Cancer Survivors? An Online Modified Reactive Delphi Study.

This research sought to answer the question 'what quality criteria do survivorship experts consider to be important in achieving optimal cancer survivorship care?'. An online modified reactive Delphi survey consisting of two rounds was completed with experts including consumers, clinicians, researchers, policymakers and quality and accreditation professionals. Survey items were based on international literature and considered three domains: Policy, process and outcome. In round 1 (R1), experts ranked the importance of 68 criteria on a five-point Likert scale. Criteria were retained if scored 4 (important) or 5 (very important) by >75% participants. In round 2 (R2), experts ranked top 10 criteria per domain. Response rates were 79% (70/89) and 84% (76/91), respectively. After R1, six criteria were removed and six were added. From R2, ten items for each domain were retained. These 30 items formed the Quality Framework. A consensus meeting considered priority items from the Quality Framework and feasibility of data collection. Prioritized items included having a policy on survivorship care; the existence of a multidisciplinary survivorship program (policy); appropriate processes to assess survivors' emotional, psychological and physical needs following treatment and stratification to appropriate models of care (process); and collecting patient-reported outcomes, quality of life and survival rates (outcome).

Advance care directive prevalence among older Australians and associations with person-level predictors and quality indicators.

BACKGROUND: Advance care planning (ACP) conversations may result in preferences for medical care being documented. OBJECTIVE: To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person-level predictors and ACD quality indicators. DESIGN AND SETTING: National multi-centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). PARTICIPANTS: A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). MAIN OUTCOME MEASURES: ACP documentation prevalence by setting and type including person-completed ACDs and non-ACD documents (completed by a health professional or someone else); person-level predictors and quality indicators of ACDs. RESULTS: Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. CONCLUSIONS AND CONTRIBUTION: Low ACP documentation prevalence and a lack of accessible, person-completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

Prevalence of advance care planning documentation and self-reported uptake in older Australians with a cancer diagnosis.

BACKGROUND: Advance care planning (ACP) and completion advance care directives (ACDs) is recommended for patients with cancer. Documentation needs to be available at the point of care. OBJECTIVE(S): To describe the prevalence of ACDs in health records and the self-reported awareness of and engagement in ACP as reported by older Australians with cancer, and to examine the concordance between self-reported completion of and presence of documentation in participants' health records. DESIGN/SETTING/PARTICIPANTS: Prospective multi-center audit of health records, and a self-report survey of eligible participants in 51 Australian health and residential aged care services. The audit included 458 people aged ≥65 years with cancer. RESULTS: 30% had ≥ ACD located in their record. 218 people were eligible for survey completion; 97 (44% response rate) completed it. Of these, 81% had a preference to limit some/all treatments, 10% wanted to defer decision-making to someone else, and 9% wanted all treatments. Fifty-eight percent of survey completers reported having completed an ACP document. Concordance between documentation in the participant's record and self-report of completion was 61% (k = 0.269), which is only fair agreement. CONCLUSION(S): Whilst 30% of participants had at least one ACD in their record, 58% self-reported document completion, and concordance between self-reported completion and presence in records was only fair. This is significant given most people had a preference for some/all limitation of treatment. Further ACP implementation strategies are required. These include a systematic approach to embedding ACP into routine care, workforce education, increasing community awareness, and looking at e-health solutions to improve accessibility at the point of care.

Sharing Cancer Survivorship Care between Oncology and Primary Care Providers: A Qualitative Study of Health Care Professionals' Experiences.

Survivorship care that is shared between oncology and primary care providers may be a suitable model to effectively and efficiently care for the growing survivor population, however recommendations supporting implementation are lacking. This qualitative study aimed to explore health care professionals' (HCPs) perceived facilitators and barriers to the implementation, delivery and sustainability of shared survivorship care. Data were collected via semi-structured focus groups and analysed by inductive thematic analysis. Results identified four overarching themes: (1) considerations for HCPs; (2) considerations regarding patients; (3) considerations for planning and process; and (4) policy implications. For HCPs, subthemes included general practitioner (GP, primary care physician) knowledge and need for further training, having clear protocols for follow-up, and direct communication channels between providers. Patient considerations included identifying patients suitable for shared care, discussing shared care with patients early in their cancer journey, and patients' relationships with their GPs. Regarding process, subthemes included rapid referral pathways back to hospital, care coordination, and ongoing data collection to inform refinement of a dynamic model. Finally, policy implications included development of policy to support a consistent shared care model, and reliable and sustainable funding mechanisms. Based on study findings, a set of recommendations for practice and policy were developed.

Challenges in obtaining research ethics and governance approvals for an Australian national intersector, multisite audit study.

Objective The aim of this study was to describe timelines and challenges encountered in obtaining ethics and governance approvals for an Australian multicentre audit study involving 100 public (n=22) and private (n=78) sites from three health sectors and all eight Australian states and territories. Methods We determined and compared the processes, documentation and number of business days required to prepare applications and obtain research ethics and governance approvals. Results In total, the full ethics and governance process (calculated from the date the first application was started to the date the final approval was granted) took 203 business days (79% of the study timeline). Standard risk ethics applications (n=4) took a median of 17 business days (range 3-35 days) to prepare and 32 business days (range 17-67 days) to be approved; expedited ethics applications (n=4) took a median of 5 business days (range 1-20 days) to prepare and 10 business days (range 1-44 days) to be approved. Governance approvals (n=23) took a median of 27 business days (range 4-63 days) to prepare and 20 business days (range 4-61 days) to be approved. Challenges included the lack of a nationwide single-site ethical review process, the extensive time required to duplicate content across applications, variability in application requirements and submission systems, and contract negotiations. Conclusion Further improvements are needed to reduce duplication and increase the efficiency of Australian ethics and governance review processes. What is known about the topic? The process for obtaining ethics approval for multicentre research has been streamlined through the introduction of single-site ethics review. However, the process of gaining ethics and governance approvals for national multicentre research continues to be time-consuming, resource-intensive and duplicative. What does this paper add? This is the first study to examine the challenges of obtaining ethics and governance approvals for a non-interventional multicentre study involving three health sectors (hospital, aged care, general practice), both private and public services and all eight Australian jurisdictions. Previous examinations of Australian multicentre studies have considered only one health sector, focused on the public system and/or were not national in scope. What are the implications for practitioners? Researchers and funders need to be aware of the considerable time, resources and costs involved in gaining research ethics and governance approvals for multicentre studies and include this in budgets and study timelines. Policy makers and administrators of ethics and governance review processes must address barriers to conducting multicentre research in Australia.

Clinical placement program in cancer survivorship for primary care providers 2017-2019.

PURPOSE: The growing population of cancer survivors indicates an increasing role for primary care practitioners (PCPs). Building on two pilot initiatives, we sought to demonstrate feasibility of a state-wide program of short observational placements for PCPs and identify changes in knowledge and confidence to deliver survivorship care. METHODS: Placements were offered at hospitals with oncology departments across Victoria, Australia. Participants attended a multidisciplinary team meeting and a minimum of two outpatient clinics. Participation targets included at least 70 general practitioners (GPs), 15 practice nurses (PNs) and 15 allied health professionals (AHPs). Mixed methods evaluation included pre- and post-placement surveys. RESULTS: The program was successfully delivered across eight sites; 148 PCPs enrolled, 58 PCPs withdrew and ultimately 90 PCPs (53 GPs, 15 PNs and 22 AHPs) completed a total of 224 placements. Ninety-two percent (81/89) of participants reported increased knowledge and confidence regarding survivorship care, 87% (78/89) agreed they had opportunities to enhance clinical relationships with specialist teams and 93% (83/89) agreed the program was relevant to their practice. CONCLUSIONS: Building on previous pilots, this third iteration demonstrated the program is sustainable across multiple health services and geographical locations. PCPs reported increased knowledge and confidence regarding survivorship care and that the program provided opportunities to strengthen relationships between primary care and cancer specialists. IMPLICATIONS FOR CANCER SURVIVORS: A placement program within tertiary cancer centres offers a feasible, transferable model to build PCP knowledge and confidence to deliver appropriate and quality survivorship care.

Prospective multicentre cross-sectional audit among older Australians accessing health and residential aged care services: protocol for a national advance care directive prevalence study.

INTRODUCTION: Advance care planning (ACP), an ongoing communication and planning process, aims to clarify a person's values and preferences, so these guide decision-making if the person becomes unable to make his or her own decisions. Ideally, ACP results in completion of advance care directives (ACD), documents completed by competent people outlining their values, treatment preferences and/or appointment of a substitute decision-maker (SDM). ACDs are most effective at the point of care, where they can be used to inform treatment decisions. Australian governments fund initiatives and have developed policy to increase ACD completion rates. However, little is known about the prevalence of ACDs at the point of care in Australian health services, making ACP evaluation efforts difficult. This study aims to determine the prevalence of ACDs in records of older people in Australian hospitals, aged care facilities and general practices. METHODS AND ANALYSIS: This is a national multicentre cross-sectional prevalence study in selected aged care facilities, hospitals and general practices. Following a 2017 feasibility study, a new protocol incorporating key learnings was developed. Sites will be recruited via expression of interest process. Health records of people aged ≥65 years, admitted to or attending services on study day(s) will be audited by trained staff from sites. Site-level data will be collected during the expression of interest. The primary outcome is the presence of at least one ACD in the health record. Secondary outcomes include prevalence of other documented outcomes of ACP (by health practitioner(s)/family/SDM), assessment of ACD quality and content and concordance between the person's documented preferences and any medical treatment orders. Individuals and sites characteristics where ACDs are present will be explored. ETHICS AND DISSEMINATION: Protocol approval by Austin Health Human Research Ethics Committee, Melbourne, Australia (reference: HREC/18/Austin/109). Results will be disseminated via peer-reviewed journals and conferences. Participating sites and jurisdictions will receive individualised reports of findings.

Concordance Between Self-Reported Completion of Advance Care Planning Documentation and Availability of Documentation in Australian Health and Residential Aged Care Services.

CONTEXT: Advance care planning (ACP) documentation needs to be available at the point of care to guide and inform medical treatment decision-making. OBJECTIVE: To examine concordance between self-reported completion of ACP documentation and self-reported storage of the documentation at the person's current point of care with the availability of the documentation in that person's health record. METHODS: A national multicenter audit of health records and a self-report survey of eligible audit participants in 51 Australian health and residential aged care services. The audit assessed availability of ACP documentation in the health record, whereas the survey assessed self-reported completion and storage of the ACP documentation at the person's current place of care. To ascertain concordance, survey and audit data were cross-tabulated and concordance rates and kappa statistics were calculated overall and by health care sector and ACP documentation type. RESULTS: The audit included 2285 people, of whom 1082 were eligible for the survey. Of 507 who completed the survey (response rate = 47%), 272 (54%) reported completing ACP documentation, of whom 130 (48%) had documentation identified in the audit. Conversely, 39 of 235 people (17%) who reported not completing ACP documentation had documentation identified (concordance rate = 64%; κ = 0.303, P < .001). The concordance rate increased to 79% when self-reported storage of ACP documentation at the person's current point of care was compared with the existence of the document in their health record (κ = 0.510, P < .001). Concordance varied by health care setting and type of ACP documentation. CONCLUSION: Discrepancies exist between self-reported completion of ACP documentation and the presence of these documents in the health records of older adults, representing a significant patient safety issue. Public education campaigns and improvements to systems for document storage and accessibility are required to support person-centered medical and end-of-life care.

Volunteer Involvement in Advance Care Planning: A Scoping Review.

CONTEXT: Volunteer involvement may support organizations to initiate and operationalize complex interventions such as advance care planning (ACP). OBJECTIVES: A scoping review was conducted to map existing research on volunteer involvement in ACP and to identify gaps in current knowledge base. METHODS: We followed the PRISMA extension for Scoping Reviews (PRISMA-ScR) guidelines. The review included studies of any design reporting original research. ACP was defined as any intervention aimed at supporting people to consider and communicate their current and future health treatment goals in the context of their own preferences and values. Studies were included if they reported data relating to volunteers at any stage in the delivery of ACP. RESULTS: Of 11 studies identified, nine different ACP models (initiatives to improve uptake of ACP) were described. Most of the models involved volunteers facilitating ACP conversations or advance care directive completion (n = 6); and three focused on ACP education, training, and support. However, a framework for volunteer involvement in ACP was not described; the studies often provided limited detail of the scope of volunteers' roles in ACP, and in three of the models, volunteers delivered ACP initiatives in addition to undertaking other tasks, in their primary role as a volunteer navigator. Increased frequency of ACP conversation or documentation was most commonly used to evaluate the effectiveness of the studies, with most showing a trend toward improvement. CONCLUSIONS: Current literature on volunteer involvement in ACP is lacking a systematic approach to implementation. We suggest future research should focus on person-centered outcomes related to ACP to evaluate the effectiveness of volunteer involvement.

Prevalence and correlates of advance care directives among older Australians accessing health and residential aged care services: multicentre audit study.

OBJECTIVES: It is important that the outcomes of advance care planning (ACP) conversations are documented and available at the point of care. Advance care directives (ACDs) are a subset of ACP documentation and refer to structured documents that are completed and signed by competent adults. Other ACP documentation includes informal documentation by the person or on behalf of the person by someone else (eg, clinician, family). The primary objectives were to describe the prevalence and correlates of ACDs among Australians aged 65 and over accessing health and residential aged care services. The secondary aim was to describe the prevalence of other ACP documentation. DESIGN AND SETTING: A prospective multicentre health record audit in general practices (n=13), hospitals (n=12) and residential aged care facilities (RACFs; n=26). PARTICIPANTS: 503 people attending general practice, 574 people admitted to hospitals and 1208 people in RACFs. PRIMARY AND SECONDARY OUTCOME MEASURES: Prevalence of one or more ACDs; prevalence of other ACP documentation. RESULTS: 29.8% of people had at least one ACD on file. The majority were non-statutory documents (20.9%). ACD prevalence was significantly higher in RACFs (47.7%) than hospitals (15.7%) and general practices (3.2%) (p<0.001), and varied across jurisdictions. Multivariate logistic regression showed that the odds of having an ACD were positively associated with greater functional impairment and being in an RACF or hospital compared with general practice. 21.6% of people had other ACP documentation. CONCLUSIONS: In this study, 30% of people had ACDs accessible and a further 20% had other ACP documentation, suggesting that approximately half of participants had some form of ACP. Correlates of ACD completion were greater impairment and being in an RACF or hospital. Greater efforts to promote and standardise ACDs across jurisdictions may help to assist older people to navigate and complete ACDs and to receive care consistent with their preferences. TRIAL REGISTRATION NUMBER: ACTRN12617000743369.