Attitudes towards and engagement in self-directed learning among paramedics in New South Wales, Australia: a cross sectional study.

BACKGROUND: Australian paramedics must engage in continuing professional development (CPD), including self-directed learning (SDL). This study aimed to examine paramedics' attitudes towards training and learning activities and perceptions about what could increase engagement in self-directed CPD. METHODS: A cross-sectional survey was conducted with New South Wales Ambulance paramedics. The 48-item survey examined learning attitudes, attitudes towards SDL and socio-demographic and professional characteristics. RESULTS: Most of the 149 participants (19% consent rate) were male (74.5%) and worked full-time (96.5%). All participants agreed that paramedics should reflect on the quality of their practice (100%) and most were committed to undertaking learning to improve their skills and capability (95.2%). However, 26.3% of participants did not feel motivated to undertake learning and 58.9% did not feel supported. Paramedics reported neutral to modestly positive attitudes towards SDL. Most participants agreed they would be more likely to engage in SDL if they had access to training equipment at their station (91%) and dedicated time during work hours (90.4%). CONCLUSION: Paramedics are highly committed to undertaking CPD. Increased engagement may be supported by providing SDL materials at work locations and ensuring dedicated time for learning during work hours.

Exploring patients' advance care planning needs during the annual 75+ health assessment: survey of Australian GPs' views and current practice.

BACKGROUND: The 75+ health assessment has been identified as a suitable trigger to introduce advance care planning (ACP) to general practice patients. Australian general practitioners (GPs) were surveyed to explore their perceptions, attitudes and practices in introducing ACP during 75+ health assessments. METHODS: A cross-sectional postal survey of Australian GPs covering their personal, professional and workplace characteristics, their current practice regarding ACP within a 75+ health assessment, and their attitude towards ACP. Multivariate logistic regression was used to analyse the factors associated with routinely discussing ACP as part of the 75+ health assessment. RESULTS: A total of 185 (19.2%) out of 964 eligible GPs returned a completed survey. Most GPs reported that patients interested in ACP were supported by the GPs or the practice nurse. Two factors, (1) attitude that ACP is an essential component of the 75+ health assessment, and (2) regional or rural location of the practice, had a statistically and clinically significant association with the GP's self-reported discussion of ACP during 75+ health assessments. CONCLUSIONS: GPs showed a high level of support and involvement in discussing ACP during 75+ health assessments. ACP support during 75+ health assessments was often provided directly by the GP or via the practice nurse. Given the international evidence that ACP training programs improve skills and knowledge, and foster positive attitudes towards ACP, there is an important need to continue funding ACP training programs for GPs and practice nurses.

Effectiveness and cost-effectiveness of a digital health intervention to support patients with colorectal cancer prepare for and recover from surgery: study protocol of the RecoverEsupport randomised controlled trial.

INTRODUCTION: Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery. METHODS AND ANALYSIS: The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use. ETHICS AND DISSEMINATION: The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation. TRIAL REGISTRATION NUMBER: ACTRN12621001533886.

Perceived Provision of Perioperative Information and Care by Patients Who Have Undergone Surgery for Colorectal Cancer: A Cross-Sectional Study.

BACKGROUND: Active patient participation in preparation and recovery from colorectal cancer surgery can be facilitated by timely information and care and may improve patient wellbeing and reduce hospitalizations; Methods: We aimed to identify gaps in perioperative information and care by asking colorectal cancer surgical patients to retrospectively report on their perceptions of care via a cross-sectional survey; Results: Overall, 179 (64% consent rate) patients completed one of two 64-item surveys exploring their views of 'optimal care' or their experiences of 'actual care'. In total, 41 (64%) aspects of care were endorsed as optimal. Of these, almost three-quarters (73%) were received by most patients (80% or more). Gaps in care were identified from discrepancies in the endorsement of optimal versus actual survey items. Of the 41 items identified as representing 'optimal care', 11 items were received by fewer than 80% of patients, including the provision of information about the impact of surgical wait-times on cancer cure (69%); pre-habilitation behaviors to improve health (75%); the type of questions to ask the health care team (74%); impact of pain medications on bowel movements (73%); how to obtain medical supplies for self-care at home (67%); dietary or exercise advice after discharge (25-31%); and emotional advice after discharge (44%). CONCLUSIONS: These gaps represent patient-centered priorities and targets for supportive interventions.

Volume, scope, and consideration of ethical issues in Indigenous cognitive impairment and dementia research: A systematic scoping review of studies published between 2000-2021.

INTRODUCTION: High quality research involving Indigenous people with cognitive impairment and dementia is critical for informing evidence-based policy and practice. We examined the volume, scope and ethical considerations of research related to dementia with Indigenous populations globally from January 2000-December 2021. METHODS: Studies were included if they were published in English from 2000 to 2021 and provided original data that focused on cognitive impairment or dementia in any Indigenous population. RESULTS: The search yielded 13,009 papers of which, 76 met inclusion criteria. The overall number of papers increased over time. Studies were mostly conducted in Australia with Aboriginal and Torres Strait Islander people (n = 30; 39%). Twenty-six papers directly involved Indigenous participants with cognitive impairment or dementia. Of these studies, ethics approval was commonly required from two or more committees (n = 23, 88.5%). Ethical and legal governance frameworks were rarely discussed. DISCUSSION: There is a clear need for further robust studies examining cognitive impairment and dementia with Indigenous populations. Future research should consider the ethical aspects of involving Indigenous participants with cognitive impairment in research.

Optimising diagnosis and post-diagnostic support for people living with dementia: geriatricians' views.

BACKGROUND: Providing a timely and accurate diagnosis of dementia and delivering appropriate support following a diagnosis are essential to allow individuals and their families to plan for the future. Recent studies suggest that provision of diagnosis and post-diagnosis support is suboptimal. This study explored geriatricians' views about strategies to improve quality of care across these domains. METHODS: An anonymous online survey of geriatricians and advanced trainees in one Australian state was conducted. An Expert Advisory Group of geriatricians, behavioural scientists and consumers proposed strategies to improve quality of care in relation to diagnosis and post-diagnosis support for people with dementia, which formed the survey items. Potential strategies were guided by, but not limited to, dementia and chronic care guidelines. Participants were asked the extent to which they agreed that implementing each of the proposed strategies would improve the quality of dementia care. RESULTS: Of 59 participants (response rate 42%), all agreed that improving accessibility of geriatricians would improve the accuracy and timeliness of diagnosis. Over 90% were supportive of strategies to improve capacity of general practitioners to accurately diagnose dementia. Between 97-100% agreed that information provided following diagnosis should encompass symptom progression, treatments, psychological supports, and advance care planning. Just over two-thirds thought that life expectancy should be discussed at this time. There were high levels of support for strategies already included in existing dementia care guidelines, however geriatricians also agreed with a range of possible strategies not currently included in guidelines. CONCLUSIONS: Geriatricians perceive that timeliness and accuracy of dementia diagnosis may be improved by increasing access to geriatricians and training general practitioners in diagnosing dementia. They also believe it is appropriate to provide information at the time of diagnosis across a comprehensive range of areas, including potentially sensitive topics such as advance care planning. Future studies should explore the views of other groups of health care providers and consumers about these approaches. The strategies proposed should be considered for inclusion in future dementia care guidelines.

Experiences of Patient-Centered Care Among Japanese and Australian Cancer Outpatients: Results of a Cross-Sectional Study.

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

Essential components of health assessment for older people in primary care: a cross-sectional survey of Australian general practitioners.

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

Australian GPs' perceptions of barriers and enablers to best practice palliative care: a qualitative study.

BACKGROUND: General Practitioners (GPs) often play an important role in caring for people at the end of life. While some international studies suggest that GPs experience a number of barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs' perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life. METHODS: This was a qualitative study using 25 semi-structured phone interviews conducted with GPs practising in metropolitan and non-metropolitan New South Wales, Australia. Data were analysed using qualitative content analysis. RESULTS: GPs reported difficulties with palliative care provision due to i) the complex and often emotional nature of doctor-family-interaction; ii) a lack of evidence to guide care; and iii) the need to negotiate roles and responsibilities within the healthcare team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between healthcare providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines which more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families and other healthcare providers, and to provide centralised access to locally tailored information on palliative care services. GPs suggested that non-government organisations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an "official visitor" program, i.e. supporting volunteers to provide peer support or respite to people with palliative care needs and their families. CONCLUSIONS: This study offers new insights into strategies to overcome well documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care which tackles the array of barriers and enablers identified in this study.

General practitioners' perceptions of best practice care at the end of life: a qualitative study.

BACKGROUND: GPs can play a central role in palliative care delivery. However, little is known about their views on what constitutes best practice care at the end of life. AIM: To explore, in a sample of Australian GPs, their perceptions of best practice palliative care and their ideal role in its delivery. DESIGN & SETTING: A qualitative interview study of 25 GPs practising in metropolitan and non-metropolitan locations in New South Wales, Australia. METHOD: Semi-structured telephone interviews were conducted. Data were analysed using qualitative content analysis. RESULTS: Participants had a mean age of 51 years, and had practised between 3 and 38 years (mean 19 years). Best practice palliative care was perceived to be proactive and responsive to a wide range of patient and family needs. Many participants indicated a need for relational continuity, which involves GPs establishing a care pathway from diagnosis to palliation, coordinating care across the pathway, and collaborating with other healthcare providers. A number of participants perceived palliative care as a natural extension of primary care and indicated that best practice palliative care mainly requires experiential knowledge and good communication skills, rather than specialised medical knowledge. Participants listed a number of communication strategies to offer patients and their families choice and ongoing negotiation about the recommended treatments. CONCLUSION: This study provides novel in-depth insights into GPs' perceptions of best practice palliative care. Future research should further investigate the identified features of care, and whether they can maximise the outcomes of patients and their families.

Systematic review of barriers and enablers to the delivery of palliative care by primary care practitioners.

BACKGROUND: There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of the barriers and enablers to optimal palliative care, and how commonly these are experienced. AIM: To explore the type and prevalence of barriers and enablers to palliative care provision reported by primary care practitioners. DESIGN: A systematic review of quantitative data-based articles was conducted. DATA SOURCES: Medline, Embase and PsychINFO databases were searched for articles published between January 2007 and March 2019. DATA SYNTHESIS: Abstracts were assessed against the eligibility criteria by one reviewer and a random sample of 80 articles were blind coded by a second author. Data were extracted from eligible full-texts by one author and checked by a second. Given the heterogeneity in the included studies' methods and outcomes, a narrative synthesis was undertaken. RESULTS: Twenty-one studies met the inclusion criteria. The most common barriers related to bureaucratic procedures, communication between healthcare professionals, primary care practitioners' personal commitments, and their skills or confidence. The most common enablers related to education, nurses and trained respite staff to assist with care delivery, better communication between professionals, and templates to facilitate referral to out-of-hours services. CONCLUSION: A holistic approach addressing the range of barriers reported in this review is needed to support primary care providers to deliver palliative care. This includes better training and addressing barriers related to the interface between healthcare services.

How well do cancer survivor self-classifications of anxiety, depression and stress agree with a standardised tool? Results of a cross-sectional study.

BACKGROUND: There is poor uptake of psychosocial interventions offered to people with cancer who record high scores on distress screening scales. Intervention uptake may be influenced by a mismatch between consumer (bottom-up) and professional (top-down) paradigms of wellbeing. The current research aims to compare cancer survivors' 'self-judgements' about their levels of anxiety, depression and stress, to classifications derived via a professional-driven measure, the Depression, Anxiety and Stress Scale (DASS-21). METHODS: A cross-sectional study was undertaken with haematological cancer survivors recruited from three population-based cancer registries in Australia. Consenting participants were mailed a questionnaire package; and non-responders received a second questionnaire package after 3-weeks and a reminder call after 6-weeks. The consumer-driven perspective was assessed via three separate single items asking survivors to self-classify their levels of anxiety, depression and stress over the past week on a scale from 'normal' to 'extremely severe'. The professional-driven classification was assessed via the DASS-21. Kappa statistics were used to assess agreement between consumer- and professional-driven measures. RESULTS: Of 2,971 eligible haematological cancer survivors, 1,239 (42%) provided written consent and were mailed a questionnaire package. Of these, 984 (79%) returned a completed questionnaire. The simple kappa for agreement between the DASS-21 and self-classified measures for anxiety was 0.47 (95% CI: 0.39 to 0.54, p<0.0001). The weighted kappa for agreement between the DASS-21 and self-classified measures of depression was 0.60 (95% CI: 0.53 to 0.67, p<0.0001) and for measures of stress was 0.51 (95% CI: 0.44 to 0.59, p<0.0001). CONCLUSIONS: Moderate agreement between self-classification and professional-driven assessments was found. The value of screening is predicated on the assumption that those with identified needs will be offered and take up services that will benefit them. Our results suggest that to improve the utility of distress screening it may be important to include assessment of survivor views about their symptoms.

Medical oncology outpatients' preferences and experiences with advanced care planning: a cross-sectional study.

BACKGROUND: Medical oncology outpatients are a group for whom advance care planning (ACP) activities are particularly relevant. Patient views can help prioritise areas for improving end of life communication. The study aimed to determine in a sample of medical oncology outpatients: (1) the perceived importance of participating in ACP activities; (2) the proportion of patients who have ever participated in ACP activities; and (3) the proportion of patients who had not yet participated in ACP activities who were willing to do so in next month. METHODS: Adult medical oncology outpatients in two Australian cancer treatment centres were consecutively approached to complete a pen-and-paper survey. Items explored perceived importance, previous participation, and willingness to participate across key ACP activities including: discussing wishes with their family or doctor; recording wishes in a written document; appointing a substitute decision maker (SDM); and discussing life-expectancy. RESULTS: 185 participants completed the survey (51% consent rate). Most patients agreed it was important to: discuss end of life wishes with family (85%) and doctors (70%) and formally record wishes (73%). Few had discussed end of life wishes with a doctor (11%), recorded their wishes (15%); chosen a SDM (28%); discussed life expectancy (30%); or discussed end of life wishes with family (30%). Among those who had not participated in ACP, most were willing to discuss life expectancy (66%); discuss end of life wishes with family (57%) and a doctor (55%); and formally record wishes (56%) in the next month. Fewer wanted to appoint a SDM (40%). CONCLUSION: Although medical oncology outpatients perceive ACP activities are important, rates of uptake are relatively low. The willingness of many patients to engage in ACP activities suggests a gap in current ACP practice. Efforts should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, and better education and training of health care providers in initiating conversations about end of life issues.

Barriers to the evaluation of evidence-based public health policy.

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.

System-Wide and Group-Specific Health Service Improvements: Cross-Sectional Survey of Outpatient Improvement Preferences and Associations with Demographic Characteristics.

Efficient patient-centred quality improvement requires an understanding of the system-wide areas of dissatisfaction along with evidence to identify the programs which can be strategically targeted according to specific patient characteristics and preferences. This cross-sectional study reports the proportion of chronic disease outpatients selecting 23 patient-centred improvement initiatives. Using univariate tests and multivariable logistic regressions, this multi-site study also identifies initiatives differentially selected by outpatients according to clinical and demographic characteristics. A total of 475 outpatients participated (49% response). Commonly selected initiatives included: reducing wait-times (22.3%); convenient appointment scheduling (16.0%); and receiving up-to-date treatment information (16.0%). Within univariate tests, preferences for information and service accessibility initiatives were not significantly associated with specific subgroups. However, seven initiatives were preferred according to age, gender, diagnosis status, and chronic disease type within multivariate models. For example, neurology outpatients were more likely to select assistance to manage psychological symptoms when compared to oncology outpatients (OR: 2.89). Study findings suggest that system-wide programs to enhance information provision are strategic approaches to improve experiences across patient characteristics. Furthermore, a few initiatives can be targeted to specific groups and emphasized the importance of detailed scoping analyses and tailored implementation plans when designing patient-centred quality improvement programs.

A consumer register: an acceptable and cost-effective alternative for accessing patient populations.

BACKGROUND: Population-based registries are increasingly used to recruit patient samples for research, however, they have several limitations including low consent and participation rates, and potential selection bias. To improve access to samples for research, the utility of a new model of recruitment termed the 'Consumer Register', that allows for direct patient recruitment from hospitals, was examined. This paper reports: (i) consent rates onto the register; (ii) preferred methods and frequency of contact; and (iii) the feasibility of establishing the register, including: (a) cost per person recruited to the register; (b) the differential cost and consent rates of volunteer versus paid data collectors; and (c) participant completion rates. METHODS: A cross-sectional survey was conducted in five outpatient clinics in Australia. Patients were approached by volunteers or paid data collectors and asked to complete a touch-screen electronic survey. Consenting individuals were asked to indicate their willingness and preferences for enrolment onto a research register. Descriptive statistics were used to examine patient preferences and linear regression used to model the success of volunteer versus paid data collectors. The opportunity and financial costs of establishing the register were calculated. RESULTS: A total of 1947 patients (80.6 %) consented to complete the survey, of which, 1486 (76.3 %) completed the questionnaire. Of the completers, the majority (69.4 %, or 1032 participants) were willing to be listed on the register and preferred to be contacted by email (50.3 %). Almost 39 % of completers were willing to be contacted three or more times in a 12 month period. The annual opportunity cost of resources consumed by the register was valued at $37,187, giving an opportunity cost per person recruited to the register of $36. After amortising fixed costs, the annual financial outlay was $23,004 or $22 per person recruited to the register. Use of volunteer data collectors contributed to an annual saving of $14,183, however paid data collectors achieved significantly higher consent rates. Successful enrolment onto the register was completed for 42 % of the sample. CONCLUSIONS: A Consumer Register is a promising and feasible alternative to population-based registries, with the majority of participants willing to be contacted multiple times via low-resource methods such as email. There is an effectiveness/cost trade off in the use of paid versus volunteer data collectors.

Does screening for physical and psychosocial symptoms vary between medical oncology treatment centres?

OBJECTIVE: Our aim is to examine whether provider screening for physical and emotional symptoms, as reported by medical oncology outpatients, varies across medical oncology treatment centres. METHODS: A cross-sectional sample of 716 patients attending the outpatient medical oncology department of six public cancer treatment centres across five Australian states participated. Four patient-report survey items explored how often patients were specifically asked by clinical staff at the treatment centre about their (i) emotional distress (anxiety, distress and depression), (ii) pain, (iii) fatigue and (iv) other physical symptoms (e.g. nausea and constipation). Asking at less than half of all appointments was classified as infrequent screening. RESULTS: No significant associations were found between treatment centre and symptom screening for emotional distress (p = 0.65), pain (p = 0.21), fatigue (p = 0.95) and other physical symptoms (p = 0.40). The proportion of patients who were regularly screened versus infrequently screened was significantly higher for physical symptoms than emotional symptoms (p < 0.001): 36% infrequently screened for emotional distress (range: 33-45%), 15% infrequently screened for pain (range: 9-21%), 16% infrequently screened for fatigue (range: 15-19%) and 11% infrequently screened for other physical symptoms (range: 5-17%). CONCLUSIONS: No significant variation in symptom screening was found across treatment centres. While the majority of patients received recommended care, treatment centres must continue to improve symptom screening rates, particularly for emotional distress. However, screening is only the first step and must be accompanied by the offer of help and provision of help to relieve patient suffering.

Life expectancy discussions in a multisite sample of Australian medical oncology outpatients.

OBJECTIVES: The study examined: 1) the proportion of patients who received their preferred level of information about life expectancy; and 2) sociodemographic, clinical and psychological factors associated with patients' perceptions of whether they received too little, too much, or the right amount of information about life expectancy. DESIGN: Cross-sectional survey. SETTING: Eleven large Australian medical oncology treatment centres. PARTICIPANTS: A total of 1431 medical oncology outpatients participated (81% consent rate). Eligible patients were approached between September 2012 and May 2014. MAIN OUTCOME MEASURES: Patients indicated whether the information about life expectancy they received aligned with their preferences. RESULTS: Almost one in four patients (24%) received too little information, 4% received too much, and 50% received all the information they wanted; 22% of patients neither wanted nor received information about life expectancy. Patients were more likely to receive too little information if they were not in remission (odds ratio [OR], 1.77), did not know their cancer stage at diagnosis (OR, 3.64), or were anxious (OR, 1.48) or depressed (OR, 1.48). Patients had greater odds of receiving too much information if they were younger (OR, 1.45), had more advanced cancer (OR, 2.01) or did not know their cancer stage at diagnosis (OR, 4.42). CONCLUSIONS: That fact that 28% of cancer patients did not receive their desired level of information about life expectancy highlights the difficulties associated with discussing this sensitive topic. To ensure that life expectancy discussions correspond with patient preferences, clinicians should routinely ask patients whether they want to know this information, in what format, and at which level of detail.

Measuring the quality of patient-centered care: why patient-reported measures are critical to reliable assessment.

PURPOSE: The Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful to patients' values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient's perspective and are essential to the accurate assessment of patient-centered care. This article's objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension. METHODS: For each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension. CONCLUSION: Patient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.