Dr Heidi Turon

Audit and feedback is commonly used as a method of both monitoring and attempting to improve the quality of healthcare. No review has examined the literature on systems-level audit and feedback strategies to improve the quality of oncology care. This scoping review examines the number, care focus (technical, nontechnical, or both) and methodological quality of published intervention studies which have used systems-level audit and feedback intended to improve the quality of care delivered in oncology treatment centers. Medline, Embase, PsycINFO, and the Cochrane database were searched, from inception to March 2021, for intervention studies which examined the effectiveness of systems-level audit and feedback in improving care for cancer patients. Studies which met the Effective Practice and Organization of Care (EPOC) minimum design criteria were then assessed using the EPOC risk of bias tool. Study characteristics and outcomes were extracted for those meeting methodological criteria. A narrative approach was used to synthesize the results. A total of 32 intervention studies met the inclusion criteria, of which 53% focused on technical aspects of care, 31% focused on nontechnical and 16% focused on both. Four of the included 32 studies met the EPOC minimum design criteria (13%). Most studies had a before-after study design (75%; n = 24) and methodological quality of the final four studies was moderate. Audit and feedback studies involving oncology treatment centers have primarily focused on technical care aspects. The low number and moderate methodological quality of the studies make it difficult to draw clear inferences about the effectiveness of systems-level audit and feedback. Furthermore, high-quality audit and feedback interventions are required across technical and nontechnical aspects of care to quantify the effectiveness of strategies for improving cancer care and ensure healthcare resources are being optimized.

Objective To describe in a sample of patients with a confirmed diagnosis of a hematological cancer: (a) the proportion who self-report experiencing an unexpected adverse event as part of their care; (b) how the adverse event was handled by the health-care organization; and (c) the sociodemographic, disease, and treatment characteristics associated with experiencing an adverse event. Design Cross sectional survey. Setting Three Australian hematological oncology treatment centers. Participants Individuals with a confirmed diagnosis of a hematological cancer. Main Outcome Measures Participants were asked if they had ever experienced an adverse event in their cancer care. Those who did were asked about their perceptions concerning what the adverse event was related to, how much harm the event caused, who identified the adverse event, and how the health-care organization responded to the adverse event. Results Forty-two participants (26.4%) perceived that they had experienced an unexpected adverse event as part of their care. Most were told about the event as soon as it happened (62%) and were given an explanation about why the event occurred (75%). Fewer were given information about how to take the matter further if they wished (43%). Participants who were unemployed, retired, disabled, or performed home duties and those whose employment status was "other"had higher odds of reporting an adverse event than those in full- or part-time employment. Conclusions There is a need for routinely querying patients during their treatment regarding the occurrence of unexpected adverse events. In addition, there is a need for improvement in the responses of health-care providers and the health-care system to these events in regard to full disclosure, apology, and options available to the patient for resolution.

Objective There are published guidelines on the care that should be provided to cancer patients upon finishing treatment (i.e. follow-up care). Gaps in care may arise where patients¿ reported experiences of care do not align with guideline recommendations. The aim of this study was to explore whether oncology patients report gaps in patient-centered follow-up care. Methods This study was a cross-sectional survey of adult cancer patients receiving follow-up care within four outpatient oncology clinics. Patients were approached in clinic waiting rooms and asked to complete an electronic survey. The survey examined patients¿ self-report of receiving six aspects of follow-up care. Results A total of 239 participants completed the survey (study consent rate = 83%). Only 49% of participants received all six items of care. Patients reported high rates of being told who to contact if they have any questions or concerns (95%); who to contact if signs or symptoms occur (91%); and what to expect in their follow-up care (90%). A lower proportion of patients indicated they were informed about the role of their GP after treatment has finished (79%); what symptoms or signs might suggest the cancer had returned (74%); or were given a written care plan (71%). Conclusions: The study highlights that there is a gap between some aspects of optimal patient-centered care, and the actual care received by patients. Health care providers and researchers should consider how to improve follow-up care experiences to ensure best practice cancer care delivery during this important stage in cancer survivorship.

Objective: Supportive care is recognised as an integral component of cancer care. To comprehensively improve supportive care and to inform policy, it is essential to examine consumer's views of health services. This study aimed to develop and test a patient-centred approach by measuring consumer perspectives on the importance of aspects of supportive care to determine what patients consider highest quality or ¿optimal¿ care. Methods: A cross-sectional survey was conducted in oncology outpatient clinics. Eligible patients were invited to complete the optimal care survey on an iPad. The survey consisted of 69 items assessing 14 care domains across five phases of the care trajectory. Results: A total of 359 participants completed the survey. Items in the ¿preparation for treatment¿ and ¿follow-up and end-of-life care¿ phases were endorsed as very important/essential to optimal care by most participants (79¿97% and 80¿100%, respectively). Items in the ¿preparation for first appointment¿ (48¿84%), ¿first appointment¿ (51¿97%) and ¿receiving treatment¿ (32¿93%) phases showed greater variation in endorsement. Conclusion: This study provides a patient-centred tool for quantifying optimal supportive care for people with cancer across the treatment trajectory. This tool could be used by healthcare providers to evaluate existing care quality, develop policies and guide clinical service improvements.

Objective: To explore the preferences of people with cancer regarding the timing and format of information provision about emotional concerns that may occur when undergoing medical procedures. Methods: Eligible cancer survivors were mailed a survey containing discrete choice scenarios examining their timing and format preferences for information about potential emotional concerns associated with an upcoming hypothetical medical procedure. Results: Of 356 eligible patients, 271 (76 %) completed the survey. Both face-to-face discussion and written materials were preferred as the mode of information delivery over access to a website. In order of descending preference, participants preferred to receive the information 1 week, 3 days and the day of the procedure. There were no differences in preferences for timing or format between subgroups based on age, gender, education and cancer type. Conclusion: This study has demonstrated that cancer patients prefer receiving information about emotional concerns that might be experienced as part of a medical procedure in either written or via face-to-face format, and one week before the procedure. Practice Implications: In order to provide patient-centred care, clinicians and the healthcare system more broadly should consider patient preferences for information delivery about upcoming medical procedures. Information: preparation for medical procedures; discrete choice; oncology; patient preference; emotional response.

Background: Despite their central role in patient care, few studies have explored cancer nurses¿ perspectives about errors within the health care system. Aims: To determine in a sample of cancer nurses the: (1) perceived accuracy of patient-reported health care error rates in medical oncology and haematology care; (2) extent to which nurses¿ perceive the health care system responds to errors in accord with best-practice disclosure standards; and (3) association between perceived barriers to disclosure of errors and years of experience, number of errors in previous six months and nursing role. Methods: Cross-sectional online survey of members of an oncology nursing society and/or registered or enrolled nurses employed in an oncology setting. Descriptive statistics including frequencies and proportions were calculated for all variables, and chi-square/Fisher's exact test was used to explore the association between perceived barriers to disclosure and several predictor variables. Findings: Ninety-seven nurses across the two cohorts completed the survey. Across the two cohorts, 36% and 27% of nurses perceived medical oncology and haematology patient-reported error rates to be accurate, respectively. Sixty-six percent agreed data should be routinely collected from patients; and 90% agreed data should be reported back to treatment centres. Nurses perceived patients were ¿always¿: given an apology (24%); able to ask questions (20%), told steps taken to prevent future errors (18%), told about errors when they happened (16%) and given honest explanations (17%). Barriers to error disclosure included burden of reporting (75%), fear career damage (74%), lack institutional support (65%), fear legal action (64%), no patient harm (58%) and not nurses¿ responsibility (27%). Discussion: Nurses did not consistently agree that previously-reported patient-reported error rates were accurate. Nurses agreed patient-reported data on health care error rates should be collected and fed back to treatment centres and that there is room for improvement with regard to adherence to open disclosure standards. Conclusion: System-level strategies are required to overcome barriers to disclosure.

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.

Introduction: There is a need to improve the psychosocial well-being of cancer patients. To date, intervention research has primarily focussed on improving psychosocial well-being through targeting singular aspects of care at the individual patient level. Sustainable, high-quality psychosocial care should address the issues faced by people diagnosed with cancer throughout the care pathway using a system-based approach. Aims: To examine the number of intervention trials attempting to improve psychosocial cancer care that have implemented a system-based approach. Method: Five journals were selected and relevant studies across all years were extracted. Four criteria, argued to be essential characteristics of system-based change, were assessed: (1) establishing a culture change within the healthcare system/organisation, through designated leaders who endorse organisational goals; (2) adopting a multidisciplinary approach to change; (3) mapping the system and identifying points of leverage; and (4) measuring the impact of change and adapting establish feedback loops. Results: The search strategy returned 1174 citations, of which five met the inclusion criteria. Of the intervention studies identified, three met none of the four defined criteria for a systems-based intervention, one study met criterion 2 only, and one study met all four criteria, however, was not a rigorous study design. Conclusions: This review of published psychosocial intervention trials in top-ranking psychosocial cancer care journals only found one study that met our criteria for evaluating system-based change. This is likely to be a consequence of the significant pragmatic and political barriers to conducting system-based intervention research.

Objective: Using a vignette-style DCE in a sample of oncology patients, this study explored: (1) the relative influence of the patient's level of concern about their depression on preferences for care, (2) the relative influence of depression severity according to a mental health checklist on preferred treatment-seeking options, and (3) whether patient age and gender were associated with depression care preference. Methods: A discrete choice experiment (DCE) survey of cancer patients was conducted. Hypothetical vignettes to elicit care preferences were created using two attributes: the cancer patient's level of concern about depression (a little or a great deal) and results of a mental health checklist (not depressed or very depressed). Three response options for care preferences were presented, including a self-directed approach, shared care approach, and clinician-directed referral approach. Participants chose their most and least preferred options. Results: A total of 281 cancer patients completed the survey. There was a significant association between level of concern and the most preferred option. Those with a great deal of concern about depression preferred to receive referral from their clinician more than those with a little concern about depression. Males were significantly more likely to select a self-directed approach as their most preferred option. Conclusions: An oncology patient's level of concern about depression may influence the type of care they want to receive from their cancer doctor for depression. This finding has implications for depression screening in clinical practice.

Objective The objective of this study was to explore medical oncology outpatients' perceived experiences of errors in their cancer care. Methods A cross-sectional survey was conducted. English-speaking medical oncology outpatients aged 18 years or older were recruited from 9 Australian cancer treatment centers. Participants completed 2 paper-and-pencil questionnaires: An initial survey on demographic, disease and treatment characteristics upon recruitment; and a second survey on their experiences of errors in cancer care 1 month later. Results A total of 1818 patients (80%) consented to participate, and of these, 1136 (62%) completed both surveys. One hundred forty-eight participants (13%) perceived that an error had been made in their care, of which one third (n = 46) reported that the error was associated with severe harm. Of those who perceived an error had been made, less than half reported that they had received an explanation for the error (n = 65, 45%) and only one third reported receiving an apology (n = 50, 35%) or being told that steps had been taken to prevent the error from reoccurring (n = 52, 36%). Patients with university or vocational level education (odds ratio [OR] = 1.6 [1.09-2.45], P = 0.0174) and those who received radiotherapy (OR = 1.72 [1.16-2.57]; P = 0.0076) or "other" treatments (OR = 3.23 [1.08-9.63]; P = 0.0356) were significantly more likely to report an error in care. Conclusions There is significant scope to improve communication with patients and appropriate responses by the healthcare system after a perceived error in cancer care.

Public health policy has the potential to produce great benefits for individuals and communities. There is growing demand that such efforts be rigorously evaluated to ensure that the expected benefits are, in fact, realised. Commonly, public health policy is evaluated by consumer acceptability, reach, or changes in knowledge and attitudes. Non-robust research designs are often used. But these approaches to evaluation do not answer three critical questions: Has a change in the desired outcome occurred? Was it a consequence of the policy and not some extraneous factor? Was the size of the change considered significant and cost-effective? We, a team of government and academic scholars working in research and evaluation, have examined some of the more common impediments to robust evaluation: political impediments, a lack of investment in evaluation capacity within bureaucracy, and the failure of academic researchers to understand the need for the evaluation of public health policy.

Purpose: To explore the experiences of haematological cancer outpatients in obtaining information about their cancer and its treatment. Methods: A cross-sectional survey of adult haematological cancer outpatients was conducted. Participants completed two pen-and-paper questionnaires: the first examined demographics and disease characteristics; the second, completed four weeks later, asked about the cancer information received. Participants indicated whether they received the information they needed about medical procedures and self-management, experiences regarding doctor-patient communication, and self-efficacy in seeking information and support. Where possible, items were derived from Australian psychosocial cancer care guidelines. Results: Two hundred and ninety-three (84%) patients consented to participate, with 170 (58%) completing both questionnaires. Most participants reported receiving information in accordance with guidelines. Areas identified as requiring improvement included difficulty recalling information (28%); information overload (26%); insufficient opportunity to ask questions (23%); and insufficient information about managing anxiety related to medical procedures (20%). Conclusion: While many haematological cancer patients report receiving adequate information, there is room for improvement. Implementation of evidence-based strategies, such as decision aids or audiotapes of the consultation, may help to improve information experiences. Practice implications: A patient-centred approach to information provision is essential for ensuring information addresses the needs and preferences of the patient.

Background: Advance care planning involves considering, discussing and documenting future wishes in case a person is unable to make or communicate decisions. Given people with dementia are at high risk of future decisional incapacity, it is critical that advance care planning occurs early in the illness trajectory. Aim: To determine (1) the number of intervention studies published between 1997 and July 2017 that aimed to increase advance care planning for persons with dementia, (2) the methodological quality of studies and (3) the effectiveness of interventions in increasing advance care planning for persons with dementia. Design: Systematic review. Data sources: Medline, Cochrane, EMBASE, PsycINFO and CINAHL were searched for articles published from 1997 to July 2017. Studies were included if they utilised a methodologically robust study design and reported on an intervention designed to increase participation in advance care planning for persons with dementia that was targeted at the person with dementia and/or a carer/family member. Methodological quality was assessed independently by two authors. Results: Four studies met the criteria for inclusion. Methodological quality was variable. Two studies did not report analyses comparing advance care planning outcomes for intervention and control participants. A third study found no effect for a nurse-facilitator intervention. The fourth study found that a structured conversation about end-of-life care with a family member increased the likelihood of advance care orders being listed in residents¿ records. Conclusion: There is little evidence about effective strategies to improve participation in advance care planning for persons with dementia. Methodologically rigorous intervention trials are needed to test interventions that encourage timely participation.

Purpose: To describe the perceptions of haematological cancer patients about the components of care deemed essential to supporting them to obtain and understand information about their cancer, its treatment and its impact on their life. Methods: A cross-sectional survey was conducted with individuals diagnosed with haematological cancer. Eligible patients presenting for a scheduled outpatient appointment were invited to complete a pen-and-paper survey in the clinic waiting room while waiting for their appointment. Those who completed the survey were mailed a second survey approximately 4¿weeks later. Participants provided data about their demographic and disease characteristics and perceptions of optimal care for haematological cancer patients. Results: A total of 170 patients completed both surveys and were included in the analysis. The items endorsed as essential components of care by the highest number of participants were being able to share accurate information about their disease, treatment and ongoing care with their GP/family doctor (49%); being able to obtain up-to-date information specific to their circumstances (43%); being able to obtain information in the amount of detail that they want (34%); being able to call a health care professional at the treatment centre where they are receiving care (34%) and being able to call an experienced health care professional who has knowledge of their disease and its treatment (34%). Conclusions: Further research is needed to determine ways of meeting the preferences of haematological cancer patients and determining the associated impact on patient outcomes.

Background The cost of medicines may prove prohibitive for some cancer patients, potentially reducing the ability of a health system to fully deliver best practice care. Objective To identify nonuse or nonpurchase of cancer-related medicines due to cost, and to describe the perceived financial burden of such medicines and associated patient characteristics. Methods A cross-sectional pen- And-paper questionnaire was completed by oncology outpatients at 2 hospitals in Australia; 1 in regional New South Wales and 1 in metropolitan Victoria. Results Almost 1 in 10 study participants had used over- The-counter medicines rather than prescribed medicines for cancer and obtained some but not all of the medicines prescribed in relation to their cancer. 63% of the sample reported some level of financial burden associated with obtaining these medicines, with 34% reporting a moderate or heavy financial burden. 11.8% reported using alternatives to prescribed medicines. People reporting reduced income after being diagnosed with cancer had almost 4 times the odds (OR, 3.73; 95% CI, 1.1-12.1) of reporting a heavy or extreme financial burden associated with prescribed medicines for cancer. Limitations Study response rate, narrow survey population, self-reported survey used. Conclusion This study identifies that a number of cancer patients, especially those with a reduced income after their diagnosis, experience financial burden associated with the purchase of medicines and that some go as far as to not use or to not purchase medicines. It seems likely that limiting the cost of medicines for cancer may improve patient ability to fully participate in the intended treatment. Funding Cancer Council NSW, National Health and Medical Research Council, and Hunter Medical Research Institute, Australia.

Background: Supporting people after bereavement is a priority area for many health services. Investment in bereavement care must be supported by a rigorous evidence-base. Aim: To examine the (1) relative proportion of descriptive, measurement and intervention research in grief counselling and (2) quality and effectiveness of intervention studies. Design: Systematic review of studies published in the area of grief counselling. Data sources: MEDLINE, Embase, Cochrane Library and PsycINFO databases were searched for studies published between 2000 and 2013. Eligible papers were categorised into descriptive, measurement, review, commentaries and intervention studies. Intervention studies were assessed against the Cochrane Effective Practice and Organisation of Care methodological criteria, and papers meeting criteria were assessed for quality. The impact of interventions on grief, psychological morbidity and quality of life was examined. Results: A total of 126 data-based papers, including 47 descriptive, 3 measurement and 76 grief counselling intervention studies were included. Only 59% (n = 45) of intervention studies met Effective Practice and Organisation of Care design criteria. Overall, study quality was poor, with the majority of interventions showing a risk of bias in several key areas. The three studies that met all criteria showed mixed effectiveness. Conclusion: Grief counselling interventions require a strong rationale for design, and a systematic approach to development and evaluation. Descriptive research efforts should inform this process, focusing on homogeneity in sample, identification of risk factors for complicated grief and the impact of extraneous factors on intervention effects. Interventions should include comparisons to usual care, as well as replication to confirm positive findings.

Objective: There is a growing body of literature examining the clustering of health risk behaviours, but little consensus about which risk factors can be expected to cluster for which sub groups of people. This systematic review aimed to examine the international literature on the clustering of smoking, poor nutrition, excess alcohol and physical inactivity (SNAP) health behaviours among adults, including associated socio-demographic variables. Method: A literature search was conducted in May 2014. Studies examining at least two SNAP risk factors, and using a cluster or factor analysis technique, or comparing observed to expected prevalence of risk factor combinations, were included. Results: Fifty-six relevant studies were identified. A majority of studies (81%) reported a 'healthy' cluster characterised by the absence of any SNAP risk factors. More than half of the studies reported a clustering of alcohol with smoking, and half reported clustering of all four SNAP risk factors. The methodological quality of included studies was generally weak to moderate. Males and those with greater social disadvantage showed riskier patterns of behaviours; younger age was less clearly associated with riskier behaviours. Conclusion: Clustering patterns reported here reinforce the need for health promotion interventions to target multiple behaviours, and for such efforts to be specifically designed and accessible for males and those who are socially disadvantaged.

Background: Indigenous Australians are a socially disadvantaged group who experience significantly poorer health and a higher prevalence of modifiable health behaviours than other Australians. Little is known about the clustering of health risks among Indigenous Australians. The aims of this study were to describe the clustering of key health risk factors, such as smoking, physical inactivity and alcohol consumption, and socio-demographics associated with clusters, among a predominantly Aboriginal sample. Methods: Participants (n = 377) attending an Aboriginal Community Controlled Health Service (ACCHS) in regional/rural New South Wales, Australia, in 2012-2013 completed a self-report touch screen health risk survey. Clusters were identified using latent class analysis. Results: Cluster 1 ('low fruit/vegetable intake, lower risk'; 51 %) consisted of older men and women; Cluster 2 ('risk taking'; 22 %) included younger unemployed males with a high prevalence of smoking, risky alcohol, and illicit drug use. Cluster 3 ('inactive, overweight, depressed'; 28 %) was characterised by younger to mid aged women likely to have experienced emotional or physical violence. Conclusions: If future research identifies similar stable clusters of health behaviours for this population, intervention approaches targeting these clusters of risk factors should be developed and tested for Aboriginal and Torres Strait Islander Australians.

Background: Alcohol disproportionately affects socially disadvantaged groups including Aboriginal and Torres Strait Islander Australians. Methods to assess alcohol intake for disadvantaged communities need to be able to capture variable or episodic drinking. The ability of a seven-day diary to capture typical consumption for a predominantly Aboriginal sample has not been assessed. Objective: One aim of this paper was to examine agreement between a seven-day retrospective diary and 'usual' drinking assessed by a modified version of the Alcohol Use Disorders Identification Test question 3 (AUDIT-3m; two questions). Other aims were to describe drinking patterns as reported in the seven-day diary. Method: In 2012, consecutive adults attending an Aboriginal Community Controlled Health Service completed a cross-sectional health risk survey on a touch screen laptop (n = 188). Alcohol consumption questions included the retrospective diary and AUDIT-3m. Agreement was assessed using weighted kappa analysis. Results: There was good agreement between the two measures of consumption; however, the AUDIT-3m questions identified more current drinkers. Respondents who were drinkers (54%) tended to consume large amounts per drinking occasion: almost half (46%) of diary completers reported nine or more standard drinks on at least one occasion in the last week. Conclusions: The seven-day diary did not adequately capture variability in alcohol consumption common among this sample. Although the AUDIT-3m appeared acceptable, alternative approaches to assess usual or risky alcohol consumption, such as asking about specific drinking occasions, or allowing participants to respond in non-standard drink sizes, also need to be considered for indigenous and other disadvantaged communities.