Dr Alison Zucca

This paper discusses the needs of medical researchers working in the area of patient-centred medicine, in particular their use of survey data in measuring patient opinions, needs, perceived quality of care received, and priorities of health service interventions. Until quite recently, collection of survey data has been either paper-based, or achieved using computer software that largely duplicated paper-based processes with limited additional functionality. The authors investigate the use of web-based technology to support collection of such data from patients, including experiences and observations on enhanced/additional functionality made possible by its adoption. A novel software design termed QuON is presented, together with examples of its capabilities and uses in current research projects. Copyright © 2014 SCITEPRESS - Science and Technology Publications. All rights reserved.

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.

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.

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.

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.

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.

Context Identifying modifiable gaps in the symptom management pathway, as perceived by patients, is the first step to relieving patient suffering. Objectives The objective is to describe the proportion of patients experiencing treatable cancer-related symptoms who reported 1) a health care provider at the treatment center offered assistance for their symptom, 2) they accepted the assistance offered, and 3) the assistance relieved suffering. Variation in symptom management among treatment centers also was examined. Methods A survey was done with 528 medical oncology outpatients recruited from six treatment centers. Eight items explored management of prevalent, burdensome, and treatable cancer-related symptoms: pain, fatigue, other physical side effects, and emotional distress. Participants were asked about symptom management provided at the clinic from where they were recruited. Questions referred to the last occasion the patient experienced the symptom. Results Fewer patients were offered help to relieve fatigue (44%) and emotional distress (57%), than pain (90%) and other physical side effects (84%). In most cases, help was not offered as clinic staff were not aware of the patient's symptom. Although the vast majority of patients accepted the help that was offered, more patients accepted help for physical symptoms (pain, 97%; fatigue, 95%; and other side effects, 98%) than emotional symptoms (87%). When care was provided, most patients experienced at least a little relief from pain (99%), fatigue (94%), and emotional distress (96%). Symptom management did not vary significantly by treatment center (P = 0.073). Conclusion Quality improvement initiatives must focus primarily on improving providers' awareness of their patients' symptoms and ensuring that patients are subsequently offered help.

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.

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.

Patient-centred care is argued to be an essential component in the delivery of quality health and cancer care. This manuscript discusses the need to generate credible data which indicates the quality of patient-centred care provided by cancer treatment centres. Patient-centred care covers six domains including physical comfort; emotional support; respect for patients' preferences and values; integration and coordination; involvement of family and friends; and the provision of information, communication and education to enable patients to understand and make informed decisions about their care. First, we identify priority areas within each domain. Next, we propose three questions that should be asked of every patient across the six domains of patient-centred care. The first question explores whether patients were specifically asked by a healthcare provider at the cancer treatment centre about their concerns, values and preferences. Research indicates that it cannot be assumed that clinicians are aware of patient's needs or preferences in these six areas. Second, if the answer from the patient suggests that they would like assistance, then it would be expected that this would be offered. Thirdly, if the patient indicates that they would like such assistance and it is provided, then it might be expected that the patient would report that the provided assistance did relieve their suffering, or the assistance provided was consistent with their preferences, needs and values. Regular measurement and reporting of these aspects of patient-centred cancer care has the potential to identify deficits and inequities in care delivery, allow for comparisons across treatment centres and stimulate an improvement in the patient-centred care provided to cancer patients. © 2014 Springer-Verlag.

Prevention in the oncology setting has traditionally focused on the progression of cancer, recurrence and development of new cancers. Increasingly, the focus has moved to a more holistic view of prevention that pursues prevention of suffering and maintaining quality of life. The cancer treatment team has the opportunity to play an active role in the promotion of healthy lifestyles for patients, and the relatives for whom the patient's cancer conveys risk. Assisting patients to adhere to 'non-cancer' care is important for their mortality and morbidity. Given patient's reluctance to disclose physical and emotional side-effects they may be experiencing, there is a need for health providers to regularly initiate discussions with their patients about their needs. Similarly, an oncology service that actively seeks to understand patient preferences will be better equipped to provide individualised care. A systems-minded approach to prevention may ensure that cancer care is organised to anticipate and to prevent of poor quality care. As the cancer treatment team will continue to play a more complex role in prevention, they must be supported by organisational factors that facilitate evidence-based practice.