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.

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.

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.

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.

Prevalence and predictors of the short-term trajectory of anxiety and depression in the first year after a cancer diagnosis: a population-based longitudinal study.

PURPOSE: Few studies have examined psychological adjustment for cancer survivors in late treatment and early survivorship stages. Our study investigated the prevalence and short-term trajectories of anxiety, depression, and comorbid anxiety-depression among adult cancer survivors, and identified the individual, disease, health behavior, psychological, and social predictors of chronic and late psychological morbidity. METHODS: A heterogeneous sample of adult cancer survivors was recruited from two state-based cancer registries. A total of 1,154 survivors completed self-report questionnaires at 6 (Time 1) and 12 months (Time 2) postdiagnosis. Anxiety and depression were assessed by the Hospital Anxiety and Depression Scale with cases identified by a subscale cutoff score ≥ 8. Logistic regression analyses identified Time 1 characteristics associated with anxiety and/or depression at Time 2. RESULTS: The point prevalence of anxiety (Time 1, 22%; Time 2, 21%), depression (13% at both timepoints) and comorbid anxiety-depression (9% at both timepoints) was similar at 6 and 12 months postdiagnosis. The most prevalent Time 1 to Time 2 trajectory was noncase for anxiety (70%), depression (82%), and comorbid anxiety-depression (87%). While psychological morbidity at Time 1 was the strongest predictor of psychological morbidity at Time 2, being diagnosed with lung cancer and health risk behaviors (smoking, insufficient physical activity) were also strong predictors. CONCLUSION: Targeted psychological screening of vulnerable survivors and early intervention may prevent the onset and/or reduce the severity of psychological morbidity in early survivorship. Trials of risk reduction interventions targeting psychological functioning and health risk behaviors seem warranted.

Prevalence and correlates of cancer survivors' supportive care needs 6 months after diagnosis: a population-based cross-sectional study.

BACKGROUND: An understanding of the nature and magnitude of the impact of cancer is critical to planning how best to deliver supportive care to the growing population of cancer survivors whose need for care may span many years. This study aimed to describe the prevalence of and factors associated with moderate to high level unmet supportive care needs among adult cancer survivors six months after diagnosis. METHODS: A population-based sample of adult cancer survivors diagnosed with one of the eight most incident cancers in Australia was recruited from two state-based cancer registries. Data for 1323 survivors were obtained by self-report questionnaire and linkage with cancer registry data. Unmet needs were assessed by the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using chi-square and multiple logistic regression analyses. RESULTS: A total of 444 (37%) survivors reported at least one 'moderate to high' level unmet need and 496 (42%) reported 'no need' for help. Moderate to high level unmet needs were most commonly reported in the psychological (25%) and physical aspects of daily living (20%) domains. The five most frequently endorsed items of moderate to high unmet need were concerns about the worries of those close to them (15%), fears about the cancer spreading (14%), not being able to do the things they used to do (13%), uncertainty about the future (13%) and lack of energy/tiredness (12%). Survivors' psychological characteristics were the strongest indicators of unmet need, particularly caseness for anxious preoccupation coping which was associated (OR = 2.2-5.9) with unmet need for help across all domains. CONCLUSIONS: Unmet supportive care needs are prevalent among a subgroup of survivors transitioning from active treatment to survivorship, although lower than previously reported. In addition to coping support, valuable insight about how to prevent or address survivors' unmet needs could be gained by examining the substantial proportion of survivors who report no unmet needs.

All's well that ends well? Quality of life and physical symptom clusters in long-term cancer survivors across cancer types.

CONTEXT: Little is known about the presentation of multiple concurrent symptoms (symptom clusters) in long-term cancer survivors, with few studies adequately powered to compare quality of life (QoL) and symptom presentation by cancer type. OBJECTIVES: This research aimed to 1) assess patient-reported QoL and 2) identify clusters of cancer-related physical symptoms by cancer type among long-term breast, prostate, colorectal, and melanoma cancer survivors. METHODS: A population-based cross-sectional sample of 863 adult cancer survivors five to six years post-diagnosis completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), assessing global QoL and frequency of presentation of cancer-related physical symptoms. RESULTS: Long-term survivors reported higher levels of global QoL than 1) the general population (age-adjusted mean=79.4 vs. 71.1, small clinical difference) and 2) cancer patients early in the care trajectory (age-adjusted mean=77.1 vs. 61.3, moderate clinical difference). The majority (71%) did not report any cancer-related physical symptoms; 18% reported multiple (two or more) symptoms in the past month. Factor analysis found that cognitive functioning, fatigue, insomnia, pain, dyspnea, appetite loss, constipation, diarrhea, nausea, and vomiting formed a cluster (α=0.48). No symptom clusters were identified that were specific to just one cancer type. However, individual symptoms (including diarrhea, pain, constipation, and insomnia) modestly discriminated between cancer types. CONCLUSION: Contrary to expectations, no symptom clusters specific to one type of cancer were identified and survivors reported few cancer-related symptoms and high QoL. These results convey a strong "good news" message, providing health professionals with a sound foundation for making encouraging predictions about their patients' long-term physical recovery after cancer. Cancer patients also will welcome the news that only a minority of five-year survivors experience long-term and late effects.

Flourishing or floundering? Prevalence and correlates of anxiety and depression among a population-based sample of adult cancer survivors 6months after diagnosis.

OBJECTIVE: To describe the prevalence of anxiety, depression and comorbid anxiety-depression among adult cancer survivors six months following diagnosis, and identify the individual, disease, health behaviour, psychological and social factors associated with psychological morbidity. METHODS: A population-based sample of adult cancer survivors was recruited from two state-based cancer registries in Australia. Data for 1323 survivors were obtained by self-report questionnaire and linkage with registry data. Anxiety and depression were assessed by the 14-item Hospital Anxiety and Depression Scale (HADS). RESULTS: The prevalence of psychological morbidity was 28% (95% CI: 23%-33%). Specifically, 24% (95% CI: 19%-29%) of survivors were identified as cases on anxiety (irrespective of depression), 14% (95% CI: 9%-19%) as cases on depression (irrespective of anxiety) and 10% (95% CI: 5%-15%) as cases on comorbid anxiety-depression. In addition to mental health history prior to cancer, modifiable health behaviours (physical activity, smoking status), psychological (helplessness-hopelessness, anxious preoccupation coping) and social (low positive social interaction) characteristics were stronger indicators of psychological morbidity than survivors' individual or disease characteristics. LIMITATIONS: Psychological morbidity was assessed by self-report screening instrument rather than clinical interview. The extent to which psychological morbidity is age-related versus cancer-related cannot be determined without a gender- and age-matched control group. CONCLUSION: Although lower than previously reported, psychological morbidity is prevalent six months after a cancer diagnosis and emphasises the need for routine psychosocial assessment throughout the cancer trajectory to identify those at increased risk or in need of immediate intervention. Physical activity, smoking cessation and coping skills training interventions warrant further exploration.

Life is precious and I'm making the best of it: coping strategies of long-term cancer survivors.

OBJECTIVE: Coping strategies mediate the relationship between challenging situations and their impact on psychosocial outcomes. Many long-term cancer survivors continue to face a range of challenges in their daily lives, yet little is known about how this population copes. The study explored the prevalence and predictors of cancer-specific coping strategies among a heterogeneous sample of long-term cancer survivors. METHODS: A population-based cross-sectional sample of 863 adult cancer survivors 5-6 years post-diagnosis completed a pen-and-paper survey. Cancer-specific coping was assessed via the Mini-Mental Adjustment to Cancer (mini-MAC) Scale. Potential predictor variables included patient, disease and treatment characteristics and social support. RESULTS: The most commonly used coping strategies were fatalism and fighting spirit. Of those survivors that used any of the coping strategies assessed, 53% used at least two strategies. Maladaptive coping was commonly predicted by low social support (OR = 1.77 to 2.49) and being a disability pensioner, whereas having ever received chemotherapy widely predicted greater use of all types of coping. A weekly household income of over $1000 a week uniquely predicted not using any mini-MAC coping strategies. CONCLUSIONS: Survivors continue to engage in cancer-specific coping strategies many years after diagnosis, albeit to a lesser extent than recent survivor populations. A number of predictors were identified that can alert health workers to long-term survivors at increased risk of maladaptive coping. Given that low social support consistently predicted maladaptive coping responses, interventions aimed at promoting positive coping responses should include strategies to increase access to social support.

Anxiety and depression among long-term survivors of cancer in Australia: results of a population-based survey.

OBJECTIVE: To assess the prevalence and predictors of anxiety and depression among a heterogeneous sample of long-term adult cancer survivors. DESIGN AND PARTICIPANTS: Cross-sectional survey of 863 adults diagnosed with a new histologically confirmed cancer (local or metastatic) between 1 April and 30 November 1997 and still alive in 2002, living in NSW, able to read and understand English adequately, physically and mentally capable of participating, and aware of their cancer diagnosis, who were randomly selected from the New South Wales Central Cancer Registry. MAIN OUTCOME MEASURES: Prevalence of anxiety and depression assessed by the Hospital Anxiety and Depression Scale; and factors (patient, disease, and treatment characteristics; coping style; social support) predicting clinical or borderline levels of anxiety and depression. RESULTS: Levels of anxiety and depression were low; only 9% of participants reported clinically important levels of anxiety and 4% reported depression. The strongest predictive factors of borderline or clinical anxiety were previous treatment for psychological illness, maladaptive coping styles (helplessness-hopelessness, anxious preoccupation) and poor social support. Borderline or clinical depression was most strongly predicted by previous treatment for psychological illness, being an invalid pensioner, maladaptive coping style (helplessness-hopelessness) and poor positive social interaction. CONCLUSIONS: By 5 years after diagnosis, most survivors had adjusted well to their cancer experience, with levels of anxiety and depression similar to those of the general population. Nevertheless, a small and important group of long-term survivors continue to experience adverse psychological effects and need assistance. Monitoring of psychological wellbeing and referring patients when appropriate need to be integrated into routine care for cancer survivors.