Development, implementation, and evaluation of the Australian Stroke Data Tool (AuSDaT): Comprehensive data capturing for multiple uses.

BACKGROUND: Historically, national programs for collecting stroke data in Australia required the use of multiple online tools. Clinicians were required to enter overlapping variables for the same patient in the different databases. From 2013 to 2016, the Australian Stroke Data Tool (AuSDaT) was built as an integrated data management solution. OBJECTIVE: In this article, we have described the development, implementation, and evaluation phases of establishing the AuSDaT. METHOD: In the development phase, a governance structure with representatives from different data collection programs was established. Harmonisation of data variables, drawn from six programs used in hospitals for monitoring stroke care, was facilitated through creating a National Stroke Data Dictionary. The implementation phase involved a staged deployment for two national programs over 12 months. The evaluation included an online survey of people who had used the AuSDaT between March 2018 and May 2018. RESULTS: By July 2016, data entered for an individual patient was, for the first time, shared between national programs. Overall, 119/422 users (90% female, 61% aged 30-49 years, 57% nurses) completed the online evaluation survey. The two most positive features reported about the AuSDaT were (i) accessibility of the system (including simultaneous user access), and (ii) the ability to download reports to benchmark local data against peer hospitals or national performance. More than three quarters of respondents (n = 92, 77%) reported overall satisfaction with the data collection tool. CONCLUSION: The AuSDaT reduces duplication and enables users from different national programs for stroke to enter standardised data into a single system. IMPLICATIONS: This example may assist others who seek to establish a harmonised data management solution for different disease areas where multiple programs of data collection exist. The importance of undertaking continuous evaluation of end-users to identify preferences and aspects of the tool that are not meeting current requirements were illustrated. We also highlighted the opportunities to increase interoperability, utility, and facilitate the exchange of accurate and meaningful data.

A Stepped-Wedge Cluster-Randomized Trial to Improve Adherence to Evidence-Based Practices for Acute Stroke Management.

BACKGROUND: There is limited evidence regarding the optimal design and composition of multifaceted quality improvement programs to improve acute stroke care. The researchers aimed to test the effectiveness of a co-designed multifaceted intervention (STELAR: Shared Team Efforts Leading to Adherence Results) directed at hospital clinicians for improving acute stroke care tailored to the local context using feedback of national registry indicator data. METHODS: STELAR was a stepped-wedge cluster trial (partial randomization) using routinely collected Australian Stroke Clinical Registry data from Victorian hospitals segmented in two-month blocks. Each hospital (cluster) contributed control data from May 2017 and data for the intervention phase from July 2017 until September 2018. The intervention was multifaceted, delivered predominantly in two educational outreach workshops by experienced, external improvement facilitators, consisting of (1) feedback of registry data to identify practice gaps and (2) interprofessional education, barrier assessment, and documentation of an agreed action plan initiated by local clinical leaders appointed as change champions for prioritized clinical indicators. The researchers provided additional outreach support by e-mail/telephone for two months. Multilevel, multivariable regression models were used to assess change in a composite outcome of indicators selected for actions plans (primary outcome) and individual indicators (secondary outcome). Patient survival and disability 90-180 days after stroke were also compared. RESULTS: Nine hospitals (clusters) participated, and 144 clinicians attended 18 intervention workshops. The control phase included 1,001 patients (median age 76.7 years; 47.4% female, 64.7% ischemic stroke), and the intervention phase 2,146 patients (median age 74.9 years; 44.2% female, 73.8% ischemic stroke). Compared to the control phase, the median score for the composite outcome for the intervention phase was 17% greater for the indicators included in the hospitals' action plans (range 3% to 30%, p = 0.016) and overall for the 10 indicators 6% greater (range 3% to 10%, p < 0.001). Compared to the control phase, patients in the intervention phase more often received stroke unit care (odds ratio [OR] 1.39, 95% confidence interval [CI] 1.05-1.84), were discharged on antithrombotic medications (OR 1.87, 95% CI 1.50-2.33), and received a discharge care plan (OR 1.27, 95% CI 1.05-1.53). Patient outcomes were unchanged. CONCLUSION: External quality improvement facilitation using workshops and remote support, aligned with routine monitoring via registries, can improve acute stroke care.

Feedback of aggregate patient-reported outcomes (PROs) data to clinicians and hospital end users: findings from an Australian codesign workshop process.

OBJECTIVES: Patient-reported outcomes (PROs) are increasingly used to measure the patient's perspective of their outcomes following healthcare interventions. The aim of this study was to determine the preferred formats for reporting service-level PROs data to clinicians, researchers and managers to support greater utility of these data to improve healthcare and patient outcomes. SETTING: Healthcare professionals receiving PRO data feedback at the health service level. PARTICIPANTS: An interdisciplinary Project Working Group comprised of clinicians participated in three workshops to codesign reporting templates of summarised PRO data (modified Rankin Scale, EuroQol Five Dimension Descriptive System, EuroQol Visual Analogue Scale and Hospital Anxiety and Depression Scale) using a modified Delphi process. An electronic survey was then distributed to short list the preferred templates among a broad sample of clinical end users. A final workshop was undertaken with the Project Working Group to review results and reach consensus on the final templates. PRIMARY AND SECONDARY OUTCOME MEASURES: The recommendation of preferred PRO summary data feedback templates and guiding principles for reporting aggregate PRO data to clinicians was the primary outcome. A secondary outcome was the identification of perceived barriers and enablers to the use of PRO data in hospitals. For each outcome measure, quantitative and qualitative data were summarised. RESULTS: 31 Working Group members (19 stroke, 2 psychology, 1 pharmacy, 9 researchers) participated in the workshops, where 25/55 templates were shortlisted for wider assessment. The survey was completed by 114 end users. Strongest preferences were identified for bar charts (37/82 votes, 45%) and stacked bar charts (37/91 votes, 41%). At the final workshop, recommendations to enhance communication of PROs data for comparing health service performance were made including tailoring feedback to professional roles and use of case-mix adjustment to ensure fair comparisons. CONCLUSIONS: Our research provides guidance on PROs reporting for optimising data interpretation and comparing hospital performance.

Effect of the Coronavirus Disease 2019 Pandemic on the Quality of Stroke Care in Stroke Units and Alternative Wards: A National Comparative Analysis.

BACKGROUND AND PURPOSE: Changes to hospital systems were implemented from March 2020 in Australia in response to the coronavirus disease 2019 pandemic, including decreased resources allocated to stroke units. We investigate changes in the quality of acute care for patients with stroke or transient ischemic attack during the pandemic according to patients' treatment setting (stroke unit or alternate ward). METHODS: We conducted a retrospective cohort study of patients admitted with stroke or transient ischemic attack between January 2019 and June 2020 in the Australian Stroke Clinical Registry (AuSCR). The AuSCR monitors patients' treatment setting, provision of allied health and nursing interventions, prescription of secondary prevention medications, and discharge destination. Weekly trends in the quality of care before and during the pandemic period were assessed using interrupted time series analyses. RESULTS: In total, 18,662 patients in 2019 and 8,850 patients in 2020 were included. Overall, 75% were treated in stroke units. Before the pandemic, treatment in a stroke unit was superior to alternate wards for the provision of all evidence-based therapies assessed. During the pandemic period, the proportion of patients receiving a swallow screen or assessment, being discharged to rehabilitation, and being prescribed secondary prevention medications decreased by 0.58% to 1.08% per week in patients treated in other ward settings relative to patients treated in stroke units. This change represented a 9% to 17% increase in the care gap between these treatment settings during the period of the pandemic that was evaluated (16 weeks). CONCLUSIONS: During the first 6 months of the pandemic, widening care disparities between stroke units and alternate wards have occurred.

Denial of Cerebrovascular Events in a National Clinical Quality Registry for Stroke: A Retrospective Cohort Study.

OBJECTIVES: To investigate cerebrovascular event (CVE) denials reported by registered patients to the Australian Stroke Clinical Registry, and to examine the factors associated with CVE denial. MATERIAL AND METHODS: CVE denials reported from January 1, 2017 to June 30, 2018 were followed up with hospitals to verify their discharge diagnosis. CVE denials were compared with all non-CVE denial registrants and a 5% random sub-sample of non-CVE deniers according to patient and clinical characteristics, quality of care indicators and health outcomes. Multilevel, multivariable logistic regression models were used. Factors explored were age, sex, stroke severity, type of stroke, treatment in a stroke unit, length of stay and discharge destination. Level was defined as hospital. RESULTS: Overall, 339/23,830 (<2%) CVE denials were reported during the 18-month period. Hospitals confirmed 117 (61%) of CVE denials as a verified diagnosis of stroke or transient ischaemic attack (TIA). Compared to non-CVE deniers, CVE deniers were younger, had a shorter median length of stay (four days versus one day) and were more likely to be diagnosed with a TIA (64%) compared to the other types of stroke (11% intracerebral haemorrhage; 20% ischaemic; 5% undetermined). CONCLUSION: Very few patients denied their CVE, with the majority of denials subsequently confirmed as eligible for registry inclusion. Diagnosis of a TIA and shorter length of stay were associated with CVE denial. These findings provide evidence that very few cases are incorrectly entered into a national registry, and highlight the characteristics of those unlikely to accept their clinical diagnosis where further education of diagnosis may be needed.

Increased Relative Functional Gain and Improved Stroke Outcomes: A Linked Registry Study of the Impact of Rehabilitation.

OBJECTIVES: It is unclear how acute care influences patient outcomes in those who receive rehabilitation. We aimed to determine the associations between acute stroke therapies, outcomes during inpatient rehabilitation and self-reported outcomes at 90-180 days after stroke. MATERIALS AND METHODS: Patient-level data from adults with acute stroke registered in the Australian Stroke Clinical Registry (AuSCR, 2014-2017) were linked with data from the Australasian Rehabilitation Outcomes Centre (AROC). The main outcome was relative function gain (RFG), which is a measure of the FIM change achieved between admission to discharge as a proportion of the total gain possible based on admission FIM, relative to the maximum achievable score. Multilevel logistic/median regression analyses were used to investigate the association between RFG achieved in rehabilitation and (1) acute stroke therapies; (2) 90-180 day outcomes (health-related quality of life using EuroQoL-5D-3L; independence according to modified Rankin Scale (score 0-2) and self-reported hospital readmission). RESULTS: Overall, 8397/8507 eligible patients from the AuSCR were linked with corresponding AROC data (95% linkage rate; median age 75 years, 43% female); 4239 had 90-180 days survey data. Receiving thrombolysis (16% of the cohort) had a minimal association with RFG in rehabilitation (coefficient: 0.03; 95% Confidence Interval [CI]: 0.01, 0.05). Greater RFG achieved whilst in in-patient rehabilitation was associated with better longer-term HR-QoL (coefficient 21.77, 95% CI 17.8, 25.8) including fewer problems with mobility, self-care, pain, usual activities and anxiety/depression; greater likelihood of independence (adjusted Odds Ratio: 10.66; 95% CI 7.86, 14.45); and decreased odds of self-reported hospital readmission (adjusted Odds Ratio: 0.53; 95% CI 0.41, 0.70) within 90-180 days post-stroke. CONCLUSIONS: Stroke survivors who achieved greater RFG during inpatient rehabilitation had better HR-QoL and were more likely to be independent at follow-up. Acute care processes did not appear to impact RFG or long-term outcomes for those who accessed inpatient rehabilitation.

COVID-19 Pandemic Impact on Care for Stroke in Australia: Emerging Evidence From the Australian Stroke Clinical Registry.

We present information on acute stroke care for the first wave of the COVID-19 pandemic in Australia using data from the Australian Stroke Clinical Registry (AuSCR). The first case of COVID-19 in Australia was recorded in late January 2020 and national restrictions to control the virus commenced in March. To account for seasonal effects of stroke admissions, patient-level data from the registry from January to June 2020 were compared to the same period in 2019 (historical-control) from 61 public hospitals. We compared periods using descriptive statistics and performed interrupted time series analyses. Perceptions of stroke clinicians were obtained from 53/72 (74%) hospitals participating in the AuSCR (80% nurses) via a voluntary, electronic feedback survey. Survey data were summarized to provide contextual information for the registry-based analysis. Data from the registry covered locations that had 91% of Australian COVID-19 cases to the end of June 2020. For the historical-control period, 9,308 episodes of care were compared with the pandemic period (8,992 episodes). Patient characteristics were similar for each cohort (median age: 75 years; 56% male; ischemic stroke 69%). Treatment in stroke units decreased progressively during the pandemic period (control: 76% pandemic: 70%, p < 0.001). Clinical staff reported fewer resources available for stroke including 10% reporting reduced stroke unit beds. Several time-based metrics were unchanged whereas door-to-needle times were longer during the peak pandemic period (March-April, 2020; 82 min, control: 74 min, p = 0.012). Our data emphasize the need to maintain appropriate acute stroke care during times of national emergency such as pandemic management.

Factors Associated with Stroke Coding Quality: A Comparison of Registry and Administrative Data.

BACKGROUND: The International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification (ICD-10-AM) codes are commonly used to identify patients with diseases or clinical conditions for epidemiological research. We aimed to determine the diagnostic agreement and factors associated with a clinician-assigned stroke diagnosis in a national registry and the ICD-10-AM codes recorded in government-held administrative data. MATERIALS AND METHODS: Data from 39 hospitals (2009-2013) participating in the Australian Stroke Clinical Registry (AuSCR) were linked and merged with person-level administrative data. The AuSCR clinician-assigned stroke diagnosis was the reference standard. Concordance was defined as agreement between the clinician-assigned diagnosis and the ICD-10-AM codes for acute stroke or transient ischemic attack (TIA) (ICD-10-AM codes: I61-I64, G45.9). Multivariable logistic regression was undertaken to assess factors associated with coded diagnostic concordance. RESULTS: A total of 14,716 patient admissions were included (46% female, 63% ischemic, 14% intracerebral hemorrhage [ICH], 18% TIA and 5% unspecified stroke based on the reference standard). Principal ICD-10-AM code concordance was ICH: 76.7%; ischemic stroke: 72.2%; TIA: 80.2%; unspecified stroke: 50.8%. Factors associated with a greater odds of ischemic stroke concordance included: treatment in a stroke unit (adjusted Odds Ratio, aOR:1.58; 95% confidence interval (CI) 1.37, 1.82); length of stay >4 days (aOR:1.30; 95% CI 1.17, 1.45); and discharge destination other than home (Residential care aOR:1.57; 95% CI 1.24, 1.96; Inpatient rehabilitation aOR:1.63; 95% CI 1.43, 1.86). CONCLUSIONS: Diagnostic concordance varied based on stroke type. Future research to improve the quality of coding for stroke should focus on patients not treated in stroke units or with shorter lengths of stay where documentation in medical records may be limited.

Screening for Fabry Disease in Young Strokes in the Australian Stroke Clinical Registry (AuSCR).

Introduction: Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by a deficiency or absence of alpha-galactosidase A (α-GAL A) enzyme, where stroke can be a serious complication. The aim of this study is to determine the feasibility of centralized screening for FD, among young stroke adults registered in the national Australian Stroke Clinical Registry (AuSCR). Methods: The study was conducted in young (age 18 - 55 years) survivors of acute stroke of unknown etiology registered in AuSCR at hospitals in Queensland, Tasmania, New South Wales, and Victoria during 2014 - 2015; and who, at the 3-month outcome assessment, agreed to be re-contacted for future research. Descriptive analyses of case identification from responses and specific enzyme and DNA sequencing analyses were conducted for α-galactosidase A (α-GLA) from dried blood spot (DBS) testing. Results: Of 326 AuSCR-identified patients invited to participate, 58 (18%) provided consent but six were subsequently unable to provide a blood sample and two later withdrew consent to use their data. Among the remaining 50 participants (median age 53 years [48 - 56 years]; 47% female), 67% had experienced an acute ischemic stroke. All males (n = 27) had an initial screen for α-GLA enzyme activity of whom seven with low enzyme levels had normal secondary α-GLA gene analysis. All females (n = 23) had genetic analysis, with one shown to have a pathogenic c.352C>T p.(Arg118Cys) missense mutation of the α-GLA gene for FD. Conclusions: These findings provide logistical data for embedding a process of automated central stroke registry screening for an additional case-finding tool in FD.

Feedback of patient-reported outcomes to healthcare professionals for comparing health service performance: a scoping review.

OBJECTIVE: Patient-reported outcomes (PROs) provide self-reported patient assessments of their quality of life, daily functioning, and symptom severity after experiencing an illness and having contact with the health system. Feeding back summarised PROs data, aggregated at the health-service level, to healthcare professionals may inform clinical practice and quality improvement efforts. However, little is known about the best methods for providing these summarised data in a way that is meaningful for this audience. Therefore, the aim of this scoping review was to summarise the emerging approaches to PROs data for 'service-level' feedback to healthcare professionals. SETTING: Healthcare professionals receiving PROs data feedback at the health-service level. DATA SOURCES: Databases selected for the search were Embase, Ovid Medline, Scopus, Web of Science and targeted web searching. The main search terms included: 'patient-reported outcome measures', 'patient-reported outcomes', 'patient-centred care', 'value-based care', 'quality improvement' and 'feedback'. Studies included were those that were published in English between January 2009 and June 2019. PRIMARY AND SECONDARY OUTCOME MEASURES: Data were extracted on the feedback methods of PROs to patients or healthcare providers. A standardised template was used to extract information from included documents and academic publications. Risk of bias was assessed using Joanna Briggs Institute Levels of Evidence for Effectiveness. RESULTS: Overall, 3480 articles were identified after de-duplication. Of these, 19 academic publications and 22 documents from the grey literature were included in the final review. Guiding principles for data display methods and graphical formats were identified. Seven major factors that may influence PRO data interpretation and use by healthcare professionals were also identified. CONCLUSION: While a single best format or approach to feedback PROs data to healthcare professionals was not identified, numerous guiding principles emerged to inform the field.

The experiences of patients with advanced cancer and caregivers presenting to Emergency Departments: A qualitative study.

BACKGROUND: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations. AIM: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers. DESIGN: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame. SETTING/PARTICIPANTS: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed. RESULTS: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options. CONCLUSION: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.

Mobile Health Intervention to Increase Oral Cancer Therapy Adherence in Patients With Chronic Myeloid Leukemia (The REMIND System): Clinical Feasibility and Acceptability Assessment.

BACKGROUND: Optimal dosing of oral tyrosine kinase inhibitor therapy is critical to treatment success and survival of patients with chronic myeloid leukemia (CML). Drug intolerance secondary to toxicities and nonadherence are significant factors in treatment failure. OBJECTIVE: The objective of this study was to develop and pilot-test the clinical feasibility and acceptability of a mobile health system (REMIND) to increase oral drug adherence and patient symptom self-management among people with CML (chronic phase). METHODS: A multifaceted intervention was iteratively developed using the intervention development framework by Schofield and Chambers, consisting of defining the patient problem and iteratively refining the intervention. The clinical feasibility and acceptability were examined via patient and intervention nurse interviews, which were audiotaped, transcribed, and deductively content analyzed. RESULTS: The intervention comprised 2 synergistically operating elements: (1) daily medication reminders and routine assessment of side effects with evidence-based self-care advice delivered in real time and (2) question prompt list (QPL) questions and routinely collected individual patient adherence and side effect profile data used to shape nurses' consultations, which employed motivational interviewing to support adoption of self-management behaviors. A total of 4 consultations and daily alerts and advice were delivered over 10 weeks. In total, 58% (10/17) of patients and 2 nurses participated in the pilot study. Patients reported several benefits of the intervention: help in establishing medication routines, resolution of symptom uncertainty, increased awareness of self-care, and informed decision making. Nurses also endorsed the intervention: it assisted in establishing pill-taking routines and patients developing effective solutions to adherence challenges. CONCLUSIONS: The REMIND system with nurse support was usable and acceptable to both patients and nurses. It has the potential to improve adherence and side-effect management and should be further evaluated.

The Patient Remote Intervention and Symptom Management System (PRISMS) - a Telehealth- mediated intervention enabling real-time monitoring of chemotherapy side-effects in patients with haematological malignancies: study protocol for a randomised controlled trial.

BACKGROUND: Outpatient chemotherapy is a core treatment for haematological malignancies; however, its toxicities frequently lead to distressing/potentially life-threatening side-effects (neutropenia/infection, nausea/vomiting, mucositis, constipation/diarrhoea, fatigue). Early detection/management of side-effects is vital to improve patient outcomes, decrease morbidity and limit lengthy/costly hospital admissions. The ability to capture patient-reported health data in real-time, is regarded as the 'gold-standard' to allow rapid clinical decision-making/intervention. This paper presents the protocol for a Phase 3 multi-site randomised controlled trial evaluating a novel nurse-led Telehealth intervention for remote monitoring/management of chemotherapy side-effects in Australian haematological cancer patients. METHODS/DESIGN: Two hundred and twenty-two patients will be recruited from two hospitals. Eligibility criteria include: diagnosis of chronic lymphocytic leukaemia/Hodgkin's/non-Hodgkin's lymphoma; aged ≥ 18 years; receiving ≥ 2 cycles chemotherapy. Patients will be randomised 1:1 to either the control or intervention arm with stratification by diagnosis, chemotherapy toxicity (high versus low), receipt of previous chemotherapy and hospital. Patients allocated to the control arm will receive 'Usual Care' whilst those allocated to the intervention will receive the intervention in addition to 'Usual Care'. Intervention patients will be provided with a computer tablet and software prompting twice-daily completion of physical/emotional scales for up to four chemotherapy cycles. Should patient data exceed pre-determined limits an Email alert is delivered to the treatment team, prompting nurses to view patient data, and contact the patient to provide clinical intervention. In addition, six scheduled nursing interventions will be completed to educate/support patients in use of the software. Patient outcomes will be measured cyclically (midpoint and end of cycles) via pen-and-paper self-report alongside review of the patient medical record. The primary outcome is burden due to nausea, mucositis, constipation and fatigue. Secondary outcomes include: burden due to vomiting and diarrhoea; psychological distress; ability to self-manage health; level of cancer information/support needs and; utilisation of health services. Analyses will be intention-to-treat. A cost-effectiveness analysis is planned. DISCUSSION: This trial is the first in the world to test a remote monitoring/management intervention for adult haematological cancer patients receiving chemotherapy. Future use of such interventions have the potential to improve patient outcomes/safety and decrease health care costs by enabling early detection/clinical intervention. TRIAL REGISTRATION: ACTRN12614000516684 . Date registered: 12 March 2014 (registered retrospectively).

Cancer patient and clinician acceptability and feasibility of a supportive care screening and referral process.

BACKGROUND: Incorporating supportive care into routine cancer care is an increasing priority for the multi-disciplinary team with growing evidence of its importance to patient-centred care. How to design and deliver a process which is appropriate for patients, clinicians and health services in rural areas needs further investigation. OBJECTIVE: To (i) examine the patient and clinician acceptability and feasibility of incorporating a supportive care screening and referral process into routine cancer care in a rural setting, and (ii) explore any potential influences of patient variables on the acceptability of the process. METHODS: A total of 154 cancer patients and 36 cancer clinicians across two rural areas of Victoria, Australia participated. During treatment visits, patients and clinicians participated in a supportive care process involving screening, discussion of problems, and provision of information and referrals. Structured questionnaires with open and closed questions were used to measure patient and clinician acceptability and feasibility. RESULTS: Patients and clinicians found the supportive care process highly acceptable. Screening identified relevant patient problems (90%) and problems that may not have otherwise been identified (83%). The patient-clinician discussion helped patients realize help was available (87%) and enhanced clinician-patient rapport (72%). Patients received useful referrals to services (76%). Feasibility issues included timing of screening for newly diagnosed patients, privacy in discussing problems, clinician time and availability of referral options. No patient demographic or disease factors influenced acceptability or feasibility. CONCLUSIONS: Patients and clinicians reported high acceptability for the supportive care process, although mechanisms for incorporating the process into health care need to be further developed.

Examining the introduction of a supportive care screening and referral process for cancer patients: how does practice compare with protocols?

PURPOSE: The aim of this study was to examine the introduction of a supportive care screening and referral process into clinical practice for patients with cancer, and to determine how clinicians' actions compared to evidence-based protocols contained within the Supportive Care Resource Kit. METHODS: A Supportive Care Resource Kit was developed as a resource for clinicians to enable a systematic process of screening cancer patients for unmet supportive care needs and addressing these needs by using evidence-based protocols. Clinicians were recruited and trained in supportive care and the use of the kit. Patients were recruited and screened for their supportive care needs. Patients and clinicians undertook a problem solving discussion, which was documented and analysed using content analysis. RESULTS: In applying the screening process, clinicians undertook discussion, referral and information provision with patients. Comparison to evidence-based protocols revealed that practice was predominantly in line with protocols. Overall, clinicians' practice matched well with guidance from the protocols on discussion and referral, but less so in providing information to patients. Actions taken between supportive care domains differed with clinician preference evident for dealing with physical problems compared with practical, emotional and family problems. CONCLUSIONS: Implications for practice and research include, exploring strategies for broadening clinician confidence in dealing with all areas of supportive care needs; undertaking further research into the use of protocols in health care and incorporating strategic, multidisciplinary planning in protocol implementation schemes.

Benefits of remote real-time side-effect monitoring systems for patients receiving cancer treatment.

In Australia, the incidence of cancer diagnoses is rising along with an aging population. Cancer treatments, such as chemotherapy, are increasingly being provided in the ambulatory care setting. Cancer treatments are commonly associated with distressing and serious side-effects and patients often struggle to manage these themselves without specialized real-time support. Unlike chronic disease populations, few systems for the remote real-time monitoring of cancer patients have been reported. However, several prototype systems have been developed and have received favorable reports. This review aimed to identify and detail systems that reported statistical analyses of changes in patient clinical outcomes, health care system usage or health economic analyses. Five papers were identified that met these criteria. There was wide variation in the design of the monitoring systems in terms of data input method, clinician alerting and response, groups of patients targeted and clinical outcomes measured. The majority of studies had significant methodological weaknesses. These included no control group comparisons, small sample sizes, poor documentation of clinical interventions or measures of adherence to the monitoring systems. In spite of the limitations, promising results emerged in terms of improved clinical outcomes (e.g. pain, depression, fatigue). Health care system usage was assessed in two papers with inconsistent results. No studies included health economic analyses. The diversity in systems described, outcomes measured and methodological issues all limited between-study comparisons. Given the acceptability of remote monitoring and the promising outcomes from the few studies analyzing patient or health care system outcomes, future research is needed to rigorously trial these systems to enable greater patient support and safety in the ambulatory setting.

Incorporating supportive care into routine cancer care: the benefits and challenges to clinicians' practice.

PURPOSE/OBJECTIVES: To investigate clinicians' experiences with supportive care screening and referral, and identify perceived barriers and benefits associated with implementation into the clinical setting. DESIGN: Qualitative, exploratory approach based on interviews. SETTING: A large regional hospital in Victoria, Australia, that provides chemotherapy and radiotherapy services to patients with cancer. SAMPLE: 5 chemotherapy nurses and 1 radiation therapist. METHODS: Semistructured interviews were conducted, documented, and analyzed with qualitative techniques. MAIN RESEARCH VARIABLES: Clinical benefits of supportive care screening and referral, and barriers to clinical implementation. FINDINGS: Clinicians perceived that supportive care screening benefited their practice by improving communication and rapport with patients. Clinicians supported each other during screening implementation, and although they initially were hesitant about the process, they ultimately endorsed screening for wider implementation. Time constraints and scope of practice were identified as significant barriers. CONCLUSIONS: Supportive care screening was endorsed as part of future clinical practice, but barriers to implementation need to be addressed. IMPLICATIONS FOR NURSING: With current psychosocial guidelines recommending routine supportive care screening of patients with cancer and statewide mandatory screening targets set in Australia, healthcare organizations need to carefully consider implementation processes. Although nurses are ideally placed to complete screening, organizations need to ensure that appropriate training and support mechanisms have been developed, as well as adequate resources, to enable integration into routine practice.

Patients' perception of communication with clinicians during screening and discussion of cancer supportive care needs.

OBJECTIVE: Effective communication between patients and clinicians is an essential aspect of supportive care for cancer patients, however many patients find this communication is inadequate. This study examined cancer patients' perception of communication with their clinician during a supportive care screening and discussion process and the ways in which this process assisted communication. METHODS: One hundred and fifty-four patients undertaking treatment for cancer in chemotherapy, radiotherapy and surgical units in six hospitals in Australia participated in a formal supportive care screening, discussion and referral process and were interviewed about their experiences. RESULTS: The majority of patients interviewed felt that the process enhanced communication by encouraging them to reflect on their needs, assisting them to initiate a discussion with the clinician, validating their needs, encouraging them to seek help and support and focusing clinician attention on unmet needs. CONCLUSION: Patients perceived the formal process of supportive care improved communication between themselves and their clinicians. PRACTICE IMPLICATIONS: Undertaking a patient-centred process of supportive care can assist clinicians to meet the unmet needs of patients with cancer and can increase patient satisfaction.

Impact of two supportive care interventions on anxiety, depression, quality of life, and unmet needs in patients with nonlocalized breast and colorectal cancers.

PURPOSE: Patients with cancer experience considerable symptom burden, psychological morbidity, and unmet psychosocial needs. Research suggests that feedback of patient-reported outcomes to clinicians or caseworkers, alongside management strategies, may result in improved patient functioning. Two intervention models were developed to test this effect in a randomized, controlled trial against usual care (UC): a telephone caseworker (TCW) model and an oncologist/general practitioner (O/GP) model. Primary end points included anxiety, depression, physical/emotional functioning, and unmet supportive care needs. PATIENTS AND METHODS: Participants with nonlocalized breast or colorectal cancers were surveyed by computer-assisted telephone interview (CATI) at three time points: baseline, 3 months, and 6 months. Data collected from participant CATIs in the supportive care models were used to generate feedback to either each participant's designated TCW, or their nominated O/GPs. Data obtained from participants in the UC model were used only to assess the impact of supportive care models. In total, 356 participants consented to study participation, completed the baseline CATI, and were randomly assigned to the UC, TCW, or O/GP groups. RESULTS: No overall intervention effect was observed. Physical functioning was significantly improved at the third CATI for participants in the TCW model (P = .01), and there was a trend toward fewer participants with unmet needs (P = .07). TCW group participants also were more likely to have the following: identified issues of need discussed (P < .0001); referrals made (P < .0001); and strong agreement that the intervention improved communication with their health care team (P = .0005). CONCLUSION: The TCW model holds some promise; however, additional work in at-risk populations is required before we recommend implementation.

Is symptom burden a predictor of anxiety and depression in patients with cancer about to commence chemotherapy?

OBJECTIVES: To assess the prevalence, severity and distress from physical symptoms and the prevalence of anxiety and depression in patients about to undergo chemotherapy for potentially curable cancers; and to explore the presence of symptom clusters and investigate their relationships with anxiety and depression. DESIGN, PARTICIPANTS AND SETTING: Cross-sectional survey of 192 patients with breast or gastrointestinal cancers or lymphoma before first ever chemotherapy treatment with curative intent. MAIN OUTCOME MEASURES: Hospital Anxiety and Depression Scale to assess anxiety and depression and the Chemotherapy Symptom Assessment Scale to measure physical symptom prevalence, severity and distress ("bother"). RESULTS: Prevalence of anxiety was 45% and depression 25%. The most prevalent physical symptoms were pain (48%), feeling unusually tired (45%) and difficulty sleeping (45%). Physical symptoms rated as most severe were pain (28%), difficulty sleeping (26%) and feeling unusually tired (19%). Physical symptoms causing the most distress were pain (39%), constipation (18%) and nausea (16%). Factor analysis of symptom distress scores indicated that five factors explained 36.7% of the variance and included: gastrointestinal (nausea, vomiting, pain), general malaise (tiredness, feeling weak, headaches), emotional (feeling depressed, feeling anxious), nutritional (changes to appetite, weight loss or gain) and general physical (mouth/throat problems, shortness of breath). Regression analysis indicated that symptom distress for the malaise (beta = 1.46; P < 0.001), nutritional (beta = 0.70; P < 0.05) and gastrointestinal (beta = 0.73; P < 0.05) factors were independent predictors of depression. CONCLUSIONS: Before commencing chemotherapy, patients are already experiencing distressing symptoms and have high scores for anxiety and depression, partially explained by physical symptom distress. Patients should be routinely screened for both emotional and physical needs and appropriate interventions should be developed. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN012606000178549.