The impact of routine Edmonton symptom assessment system use on receiving palliative care services: results of a population-based retrospective-matched cohort analysis.

BACKGROUND: In 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS). AIM: The purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients. DESIGN: A retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study. RESULTS: The final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08). CONCLUSION: We have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome.

Public interest in medical assistance in dying and palliative care.

OBJECTIVES: Medical assistance in dying (MAiD) is legal in an increasing number of countries, but there are concerns that its availability may compromise access to palliative care. We assessed public interest in MAiD, palliative care, both, or neither, and examined characteristics associated with this interest. METHODS: We surveyed a representative sample of the adult Canadian public, accessed through a panel from May to June 2019. Weighted generalised multinomial logistic regression analyses were used to determine characteristics associated with interest in referral to palliative care, MAiD, or both, in the event of diagnosis with a serious illness. RESULTS: Of 1362 participants who had heard of palliative care, 611 (44.8% weighted (95% CI 42.1% to 47.5%)) would be interested in both MAiD and palliative care, 322 (23.9% (95% CI 21.5% to 26.2%)) palliative care alone, 171 (12.3% (95% CI 10.5% to 14.1%)) MAiD alone and 258 (19.0% (95% CI 16.9% to 21.2%)) neither. In weighted multinomial logistic regression analyses, interest in both MAiD and palliative care (compared with neither) was associated with better knowledge of the definition of palliative care, older age, female gender, higher education and less religiosity; interest in palliative care alone was associated with better knowledge of the definition of palliative care, older age, female gender and being married/common law; interest in MAiD alone was associated with less religiosity (all p<0.05). CONCLUSIONS: There is substantial public interest in potential referral to both MAiD and palliative care. Simultaneous availability of palliative care should be ensured in jurisdictions where MAiD is legal, and education about palliative care should be a public health priority.

Evaluating the implementation and impact of navigator-supported remote symptom monitoring and management: a protocol for a hybrid type 2 clinical trial.

BACKGROUND: Symptoms in patients with advanced cancer are often inadequately captured during encounters with the healthcare team. Emerging evidence demonstrates that weekly electronic home-based patient-reported symptom monitoring with automated alerts to clinicians reduces healthcare utilization, improves health-related quality of life, and lengthens survival. However, oncology practices have lagged in adopting remote symptom monitoring into routine practice, where specific patient populations may have unique barriers. One approach to overcoming barriers is utilizing resources from value-based payment models, such as patient navigators who are ideally positioned to assume a leadership role in remote symptom monitoring implementation. This implementation approach has not been tested in standard of care, and thus optimal implementation strategies are needed for large-scale roll-out. METHODS: This hybrid type 2 study design evaluates the implementation and effectiveness of remote symptom monitoring for all patients and for diverse populations in two Southern academic medical centers from 2021 to 2026. This study will utilize a pragmatic approach, evaluating real-world data collected during routine care for quantitative implementation and patient outcomes. The Consolidated Framework for Implementation Research (CFIR) will be used to conduct a qualitative evaluation at key time points to assess barriers and facilitators, implementation strategies, fidelity to implementation strategies, and perceived utility of these strategies. We will use a mixed-methods approach for data interpretation to finalize a formal implementation blueprint. DISCUSSION: This pragmatic evaluation of real-world implementation of remote symptom monitoring will generate a blueprint for future efforts to scale interventions across health systems with diverse patient populations within value-based healthcare models. TRIAL REGISTRATION: NCT04809740 ; date of registration 3/22/2021.

Screening for symptoms of anxiety and depression in patients treated with renal replacement therapy: utility of the Edmonton Symptom Assessment System-Revised.

PURPOSE: The Edmonton Symptom Assessment System-revised (ESASr) is widely used in clinical oncology to screen for physical and emotional symptoms. The performance of the anxiety and depression items (ESASr-A and ESASr-D, respectively) as screening tools have not been evaluated in patients treated with renal replacement therapy. METHODS: Kidney transplant recipients and patients on dialysis were recruited in Toronto. Patients were classified as having moderate/severe depression and anxiety symptoms using the established cut-off score of ≥ 10 on the Patient Health Questionnaire-9 (PHQ-9) and the General Anxiety Disorder-7 (GAD-7) questionnaires. RESULTS: This study included 931 participants; 62% male, mean age (SD) 55(16), and 52% White. All participants completed ESASr, however only 748 participants completed PHQ-9 and 769 participants completed GAD-7. Correlation between ESASr item scores and legacy scores were moderately strong (ESASr-D/PHQ-9: 0.61; ESASr-A/GAD-7: 0.64). We found good discrimination for moderate/severe depression and anxiety [area under the receiver operating characteristics curve (95% CI) ESASr-D 0.82(0.78-0.86); ESASr-A 0.87 (0.82, 0.92)]. The cut-off ≥ 2 for ESASr-D [Sensitivity = 0.76; Specificity = 0.77; Likelihood Ratio (LR) + = 3.29; LR - = 0.31] and ≥ 4 for ESASr-A (Sensitivity = 0.75; Specificity = 0.87; LR + = 5.76; LR - = 0.29) had the best combination of measurement characteristics. CONCLUSION: The identified ESASr-D and ESASr-A cut-off scores may be used to rule out patients without emotional distress with few false negatives. However, the low sensitivity identified in our analysis suggests that neither ESASr-D or ESASr-A are acceptable as standalone screening tools.

The impact of routine Edmonton Symptom Assessment System (ESAS) use on overall survival in cancer patients: Results of a population-based retrospective matched cohort analysis.

BACKGROUND: The Edmonton Symptom Assessment System (ESAS) is a validated instrument whose use has been standardized in the Ontario cancer system to measure symptoms among ambulatory cancer patients. The objective was to examine the effect of ESAS exposure on overall survival. We hypothesized, a priori, that patients exposed to ESAS would have higher rates of overall survival than those who were not exposed. METHODS: This was a retrospective matched cohort study of adults diagnosed with cancer between 2007 and 2015. Patients were considered exposed if they were screened with ESAS at least once during the study period. Their first ESAS screening date defined the index date. Each exposed patient was matched randomly to a cancer patient without ESAS using a combination of hard matching (4 variables) and propensity score matching (14 variables). Kaplan-Meier curves and multivariable Cox regression were used to evaluate the impact of ESAS exposure on survival. RESULTS: There were 128,893 pairs well matched on all baseline characteristics. The probability of survival within the first 5 years was higher among those exposed to ESAS compared to those who were not (81.9% vs. 76.4% at 1 year, 68.3% vs. 66.1% at 3 years, 61.9% vs. 61.4% at 5 years, P-value < .0001). In the multivariable Cox regression model, ESAS was significantly associated with a decreased mortality risk (HR: 0.48, 95% CI: 0.47-0.49). CONCLUSIONS: Our results show that ESAS exposure is associated with improved survival in cancer patients. This provides real world evidence of the impact of routine symptom assessment in cancer care.

Impact of Standardized Edmonton Symptom Assessment System Use on Emergency Department Visits and Hospitalization: Results of a Population-Based Retrospective Matched Cohort Analysis.

PURPOSE: The Edmonton Symptom Assessment System (ESAS) is a validated instrument whose use has been standardized in the Ontario cancer system to measure symptoms among ambulatory patients with cancer. The objective was to examine the effect of ESAS exposure on visits to the emergency department (ED) and hospitalizations. METHODS: This was a retrospective matched cohort study conducted in Ontario, Canada. The study included patients ≥ 18 years of age diagnosed with cancer between 2007 and 2015. Patients were considered exposed if they were screened with ESAS at least once during the study period, and their first ESAS screening date was defined as the index date. Each exposed patient was matched randomly to a patient with cancer without ESAS assessment using a combination of hard matching (birth year ± 2 years, cancer diagnosis date ± 1 year, cancer type, and sex) and propensity score matching (14 variables, including cancer stage, treatments received, and comorbidities). A multivariable Andersen-Gill recurrent event model was used to evaluate the effect of ESAS on the rate of health care use. RESULTS: The analysis included 128,893 matched pairs that were well balanced on baseline measures. After adjusting for other variables, patients with ESAS had lower rates of both ED visits (relative rate [RR], 0.92; 95% CI, 0.91 to 0.93) and hospitalizations (RR, 0.86; 95% CI, 0.85 to 0.87) compared with patients without ESAS. CONCLUSION: ESAS exposure is independently associated with decreased rates of ED visits and hospitalizations. This provides real-world evidence of one potential positive impact of standardized symptom assessment in cancer care.

Ambulatory Toxicity Management (AToM) in patients receiving adjuvant or neo-adjuvant chemotherapy for early stage breast cancer - a pragmatic cluster randomized trial protocol.

BACKGROUND: Population-based studies suggest that emergency department visits and hospitalizations are common among patients receiving chemotherapy and that rates in routine practice are higher than expected from clinical trials. Chemotherapy-related toxicities are often predictable and, consequently, acute care visits may be preventable with adequate treatment planning and support between visits to the cancer centre. We will evaluate the impact of proactive telephone-based toxicity management on emergency department visits and hospitalizations in women with early stage breast cancer receiving chemotherapy. METHODS: In this pragmatic covariate constraint-based cluster randomized trial, 20 centres in Ontario, Canada are randomly allocated to either proactive telephone toxicity management (intervention) or routine care (control). The primary outcome is the cluster-level mean number of ED + H visits per patient evaluated using Ontario administrative healthcare data. Participants are all patients with early stage (I-III) breast cancer commencing adjuvant or neo-adjuvant chemotherapy at participating institutions during the intervention period. At least 25 patients at each centre participate in a patient reported outcomes sub-study involving the collection of standardized questionnaires to measure: severity of treatment toxicities, self-care, self-efficacy, quality of life, and coordination of care. Patients participating in the patient reported outcomes (PRO) sub-study are asked to provide written consent to link their PRO data to administrative data. Unit costs will be applied to each per person resource utilized, and a total cost per population and patient will be generated. An incremental cost-effectiveness analysis will be undertaken to compare the incremental costs and outcomes between the intervention and control groups from the health system perspective. DISCUSSION: This study evaluates the effectiveness of a proactive toxicity management intervention in a routine care setting. The use of administrative healthcare data to evaluate the primary outcome enables an evaluation in a real world setting and at a much larger scale than previous studies. TRIAL REGISTRATION: Clinicaltrials.gov , NCT02485678. Registered 30 June 2015.

Validation of the Malignant Wound Assessment Tool - Research (MWAT-R) using cognitive interviewing.

Malignant wounds as a result of cancer are under-recognized for the physical and emotional distress they cause patients and their families. Unfortunately, there is a lack of valid and reliable screening and assessment tools to aid in the management of malignant wounds. This study aims to validate a patient-reported outcome measurement tool, Malignant Wound Assessment Tool - Research (MWAT-R). Eight patients were recruited and interviewed using the cognitive interviewing methodology to validate this tool. Patients' understanding and overall impression of the MWAT-R were explored. Our findings showed that the wording and response options posed challenges for patients in completing the tool. Overall, participants felt that questions captured the key issues related to dealing with a malignant wound and accounted for the patients' perspective. Establishing the content and face validity of the MWAT-R from the patients' perspectives using cognitive interviews has provided further evidence to the validity of this tool.

Implementation of self-management support in cancer care and normalization into routine practice: a systematic scoping literature review protocol.

BACKGROUND: Cancer survivors face a myriad of biopsychosocial consequences due to cancer and treatment that may be potentially mitigated through enabling their self-management skills and behaviors for managing illness. Unfortunately, the cancer system lags in its systematic provision of self-management support (SMS) in routine care, and it is unclear what implementation approaches or strategies work to embed SMS in the cancer context to inform health policy and administrator decision-making. METHODS/DESIGN: A comprehensive scoping review study of the literature will be conducted based on methods and steps identified by Arksey and O'Malley and experts in the field. Electronic searches will be conducted in multiple databases including CINAHL, CENTRAL, EMBASE, PsycINFO, MEDLINE, AMED, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE) (up to Issue 2, 2015), ISI Proceedings (Web of Science), PsychAbstracts, and Sociological Abstracts from January 1997 to November 5, 2018. Following the PRISMA-Extension for Scoping Reviews (PRISMA-ScR), two authors will independently screen all titles/abstracts to determine eligibility, data will be abstracted by one author and checked by a second author, and findings will be narratively summarized based on constructs of implementation in the Normalization Process Theory. DISCUSSION: This will be the first scoping review study to synthesize knowledge of implementation of SMS in the cancer care context and the implementation approaches and strategies on embedding in care. This information will be critical to inform health policy and knowledge end users about the necessary changes in care to embed SMS in practices and to stimulate future research.

EQ-5D Health Utility Scores: Data from a Comprehensive Canadian Cancer Centre.

BACKGROUND: To improve the precision of health economics analyses in oncology, reference datasets of health utility (HU) scores are needed from cancer survivors across different disease sites. These data are particularly sparse amongst Canadian survivors. METHODS: A survey was completed by 1759 ambulatory cancer survivors at the Princess Margaret Cancer Centre which contained demographic questions and the EuroQol-5D (EQ-5D) instrument. Clinical information was abstracted from electronic records and HU scores were calculated using Canadian health state valuations. Construct validity was assessed through correlation of HU and visual analog scale (VAS) scores (Spearman) and by comparing HU scores between performance status groups (effect size). The influence of socio-demographic clinical variables on HU was analyzed by non-parametric between-group comparisons and multiple linear regression. RESULTS: Mean EQ-5D HU scores were derived for 26 cancers. Among all survivors, the mean ± standard error of the mean EQ-5D utility score was 0.81 ± 0.004. Scores varied significantly by performance status (p < 0.0001) and correlated with VAS (Spearman r = 0.61). The cancer sites with the lowest mean HU scores were acute lymphoblastic leukemia (0.70 ± 0.03) and pancreatic cancer (0.76 ± 0.03); testicular cancer (0.89 ± 0.02) and chronic lymphocytic leukemia (0.90 ± 0.05) had the highest mean scores. A multiple regression model showed that scores were influenced by disease site (p < 0.001), education level (p < 0.001), partner status (p < 0.001), disease extent (p = 0.0029), and type of most recent treatment (p = 0.0061). CONCLUSIONS: This work represents the first set of HU scores for numerous cancer sites derived using Canadian preference weights. The dataset demonstrated construct validity and HU scores varied by general socio-demographic and clinical parameters.

A systematic review of factors influencing older adults' decision to accept or decline cancer treatment.

BACKGROUND: Cancer is a disease that affects mostly older adults. Older adults often have other chronic health conditions in addition to cancer and may have different health priorities, both of which can impact cancer treatment decision-making. However, no systematic review of factors that influence an older cancer patient's decision to accept or decline cancer treatment has been conducted. MATERIALS AND METHODS: Systematic review of the literature published between inception of the databases and February 2013. Dutch, English, French or German articles reporting on qualitative studies, cross-sectional, longitudinal observational or intervention studies describing factors why older adults accepted or declined cancer treatment examining actual treatment decisions were included. Ten databases were used. Two independent reviewers reviewed manuscripts and performed data abstraction using a standardized form and the quality of studies was assessed with the Mixed Methods Appraisal Tool. RESULTS: Of 17,343 abstracts reviewed, a total of 38 studies were included. The majority focused on breast and prostate cancer treatment decisions and most studies used a qualitative design. Important factors for accepting treatment were convenience and success rate of treatment, seeing necessity of treatment, trust in the physician and following the physician's recommendation. Factors important for declining cancer treatment included concerns about the discomfort of the treatments, fear of side effects and transportation difficulties. CONCLUSION: Although the reasons why older adults with cancer accepted or declined treatment varied considerably, the most consistent determinant was physician recommendation. Further studies using large, representative samples and exploring decision-making incorporating health literacy and comorbidity are needed.

Identifying changes in scores on the EORTC-QLQ-C30 representing a change in patients' supportive care needs.

PURPOSE: Using health-related quality-of-life measures for patient management requires knowing what changes in scores require clinical attention. We estimated changes on the European Organization for Research and Treatment of Cancer Quality-of-Life-Questionnaire-Core-30 (EORTC-QLQ-C30), representing important changes by comparing to patient-reported changes in supportive care needs. METHODS: This secondary analysis used data from 193 newly diagnosed cancer patients (63 % breast, 37 % colorectal; mean age 60 years; 20 % male) from 28 Canadian surgical practices. Participants completed the Supportive Care Needs Survey-Short Form-34 (SCNS-SF34) and EORTC-QLQ-C30 at baseline, 3, and 8 weeks. We calculated mean changes in EORTC-QLQ-C30 scores associated with improvement, worsening, and no change in supportive care needs based on the SCNS-SF34. Mean changes in the EORTC-QLQ-C30 scores associated with the SCNS-SF34 improved and worsened categories were used to estimate clinically important changes, and the 'no change' category to estimate insignificant changes. RESULTS: EORTC-QLQ-C30 score changes ranged from 6 to 32 points for patients reporting improved supportive care needs; statistically significant changes were 10-32 points. EORTC-QLQ-C30 score changes ranged from 21-point worsening to 21-point improvement for patients reporting worsening supportive care needs; statistically significant changes were 9-21 points in the hypothesized direction and a 21-point statistically significant change in the opposite direction. EORTC-QLQ-C30 score changes ranged from a 1-point worsening to 16-point improvement for patients reporting stable supportive care needs. CONCLUSION: These data suggest 10-point EORTC-QLQ-C30 score changes represent changes in supportive care needs. When using the EORTC-QLQ-C30 in clinical practice, scores changing ≥10 points should be highlighted for clinical attention.

Cancer patients' function, symptoms and supportive care needs: a latent class analysis across cultures.

PURPOSE: Patient-reported outcomes (PROs) are an umbrella term covering a range of outcomes, including symptoms, functioning, health-related quality of life, and supportive care needs. Research regarding the appropriate PRO questionnaires to use is informative. A previously published latent class analysis (LCA) examined patterns of function, symptoms, and supportive care needs in a sample of US cancer patients. The current analysis investigated whether the findings from the original study were replicated in new samples from different countries and whether a larger sample combining all the data would affect the classes identified. METHODS: This secondary analysis of data from 408 Japanese and 189 Canadian cancer patients replicated the methods used in the original LCA using data from 117 US cancer patients. In all samples, subjects completed the EORTC-QLQ-C30 and Supportive Care Needs Survey Short Form-34 (SCNS-SF34). We first dichotomized individual function, symptom, and need domain scores. We then performed LCA to investigate the patterns of domains for each of the outcomes, both in the individual country samples and then combining the data from all three samples. RESULTS: Across all analyses, class assignment was made by level of function, symptoms, or needs. In individual samples, only two-class models ("high" vs. "low") were generally identifiable while in the combined sample, three-class models ("high" vs. "moderate" vs. "low") best fit the data for all outcomes. CONCLUSIONS: In this analysis, the level of burden experienced by patients was the key factor in defining classes.

Is performance status associated with symptom scores? A population-based longitudinal study among cancer outpatients.

BACKGROUND: Symptom scores and performance status are both important measures for patients with cancer. However, since performance status is not often part of routinely collected data, there is interest in exploring whether it can be calculated from symptom scores. METHODS: This was a population-based longitudinal study of cancer outpatients in Ontario, Canada in the year following their cancer diagnosis and among the subset of patients during the last year of their lives. RESULTS: In the first year after diagnosis, there was a significant relationship between performance status and fatigue and appetite; fatigue and well-being had a significant association with performance status in the last year of life. In both periods, the associations, although statistically significant, were not large enough to be clinically meaningful. CONCLUSION: Performance status is an important measurement that cannot be substituted or captured with symptom scores; it is important for healthcare providers to record performance scores on a regular basis.

Barriers and facilitators to care for the terminally ill: a cross-country case comparison study of Canada, England, Germany, and the United States.

BACKGROUND: Why do many patients not die at their preferred location? AIM: Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators). DESIGN: Cross-country comparison study from a "most similar-most different" perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews. SETTING: Case study of Canada, England, Germany, and the United States. RESULTS: While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho-social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators. CONCLUSION: Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned.

A Pan-Canadian practice guideline: prevention, screening, assessment, and treatment of sleep disturbances in adults with cancer.

PURPOSE: This study aims to provide recommendations on the optimal strategies and interventions for the prevention, screening, assessment, and management of cancer-related sleep disturbance (insomnia and insomnia syndrome) in adult cancer populations. METHODS: A systematic search of the published health literature was conducted to identify randomized controlled trials, clinical practice guidelines, systematic reviews, and other guidance documents. The Sleep Disturbance Expert Panel [comprised of nurses, psychologists, primary care physicians, oncologists, physicians specialized in sleep disturbances, researchers, and guideline methodologists] reviewed, discussed, and approved the final version of the guideline. Health care professionals across Canada were asked to provide feedback through an external review process. RESULTS: Three clinical practice guidelines and 12 randomized controlled trials were identified as the evidence base. Overall, despite the paucity of evidence, the evidence and expert consensus suggest that it is important to screen and assess adult cancer patients for sleep disturbances using standardized screening tools on a routine basis. While prevention of sleep disturbance is the desired objective, cognitive behavioral therapies are effective in improving sleep outcomes. As part of the external review with 16 health care providers, 81 % indicated that they agreed with the recommendations as written. CONCLUSIONS: Sleep difficulty is a prevalent problem in cancer populations that needs greater recognition by health professionals. Prevention, screening, assessment, and treatment strategies supported by the best available evidence are critical. Recommendations and care path algorithms for practice are offered.

Advanced lung cancer patients' experience with continuity of care and supportive care needs.

As cancer care becomes increasingly complex, the ability to coordinate this care is more difficult for health care providers, patients and their caregivers alike. Despite the widely recognized need for improving continuity and coordination of care, the relationship of continuity of care with patient outcomes has yet to be elucidated. Our study's main finding is that the Continuity and Coordination subscale of the widely used Picker System of Ambulatory Cancer Care Survey is able to distinguish between lung cancer patients with unmet supportive care needs and those without. Specifically, this study shows a new association between this widely implemented continuity and coordination survey and the 'psychological needs' domain, as well as the 'health system and information' domains of supportive care needs. The finding provides support for the idea that interventions to improve continuity may impact tangible indicators of patient care such as supportive care needs being met. The study focuses attention on continuity of care as an important aspect of optimizing outcomes in cancer care.

Modeling the longitudinal transitions of performance status in cancer outpatients: time to discuss palliative care.

CONTEXT: Understanding the longitudinal transitions of performance status among persons with cancer can assist providers in determining the appropriate time to initiate palliative care support. OBJECTIVES: To model longitudinal transitions of performance status in cancer outpatients, to determine the probabilities of improvement and deterioration in performance status over time, and to evaluate the factors associated with rates of transitions. METHODS: This population-based, retrospective, cohort study comprised adult outpatients diagnosed with any type of cancer and assessed for performance status throughout their observation period using the Palliative Performance Scale (PPS; scale 0-100; 0 indicates death). At every PPS assessment, patients were assigned to one of four states: stable state (PPS score 70-100), transitional state (PPS score 40-60), end-of-life state (PPS score 10-30), or dead. A Markov multistate model under the presence of interval censoring was used to examine the rate of state-to-state transitions. RESULTS: There were 11,374 patients representing nearly 71,000 assessments. Patients with lung cancer in the transitional state had a 27.7% chance of being dead at the end of one month vs. 17.5% in patients with breast cancer. The average time spent in the transitional state was 6.6 weeks for patients diagnosed with gastrointestinal cancer vs. 8.8 weeks for patients with breast cancer. The rate at which one moves from the transitional state to death was higher for patients with lung cancer than those with breast cancer. CONCLUSION: We estimated the probability and direction of change in performance status in cancer outpatients. Entry into the transitional state may serve as an indicator for referral for palliative care support. Mean end-of-life sojourn times are too short to allow meaningful integration of palliative care.

Resource utilization and cost analyses of home-based palliative care service provision: the Niagara West End-of-Life Shared-Care Project.

BACKGROUND: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. AIM: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. DESIGN: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. RESULTS: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 $CAN) were $1,625,658.07 - or $17,112.19 per patient/$117.95 per patient day. CONCLUSION: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations.