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Family physicians' (FPs) long-term relationships with their oncology patients position them ideally to provide primary palliative care, yet their involvement is variable. We examined perceptions of FP involvement among outpatients receiving palliative care at a cancer center and identified factors associated with this involvement.Patients with advanced cancer attending an oncology palliative care clinic (OPCC) completed a 25-item survey. Eligible patients had seen an FP within 5 years. Binary multivariable logistic regression analyses were conducted to identify factors associated with (1) having seen an FP for palliative care within 6 months, and (2) having a scheduled/planned FP appointment.Of 258 patients, 35.2% (89/253) had seen an FP for palliative care within the preceding 6 months, and 51.2% (130/254) had a scheduled/planned FP appointment. Shorter travel time to FP (odds ratio [OR] = 0.67, 95% confidence interval [CI] = 0.48-0.93, p = 0.02), the FP having a 24-h support service (OR = 1.96, 95% CI = 1.02-3.76, p = 0.04), and a positive perception of FP's care (OR = 1.05, 95% CI = 1.01-1.09, p = 0.01) were associated with having seen the FP for palliative care. English as a first language (OR = 2.90, 95% CI = 1.04-8.11, p = 0.04) and greater ease contacting FP after hours (OR = 1.33, 95% CI = 1.08-1.64, p = 0.008) were positively associated, and female sex of patient (OR = 0.51, 95% CI = 0.30-0.87, p = 0.01) and travel time to FP (OR = 0.66, 95% CI = 0.47-0.93, p = 0.02) negatively associated with having a scheduled/planned FP appointment. Number of OPCC visits was not associated with either outcome.Most patients had not seen an FP for palliative care. Accessibility, availability, and equity are important factors to consider when planning interventions to encourage and facilitate access to FPs for palliative care.

Background Good communication at the end-of-life is important for patient outcomes and satisfaction. However, many healthcare providers are hesitant to engage in these conversations due to inadequate training. Classroom and bedside palliative care training have been effective in improving resident communication with patients at the end-of-life, yet the educational mechanisms that promote development remain uncharacterized. The purpose of this study was to better understand how family medicine residents are trained to have goals of care (GOC) conversations during a clinical rotation at a specialized palliative care center. Methods We conducted 15 semi-structured interviews with first- and second-year family medicine residents who completed a 4-week palliative care rotation at a specialized palliative care center between July 2013 and June 2014. We asked residents about their educational experiences during the rotation, which included both inpatient and home-visit experiences. Using thematic analysis, we identified and described recurrent experiences reported by participants related to their exposure to and development of GOC conversations. Results Participants reported feeling more comfortable approaching GOC conversations at the end of the rotation. Residents noted two elements of their training experience that may have facilitated this development: a constructive learning environment that included time and support during and after GOC conversations, and learning activities that provided various levels of supervision and independence. Conclusions A palliative care rotation may be an optimal environment for developing GOC conversation skills. Direct observation of learners and fewer time pressures provide important opportunities for mentoring, support, feedback and reflection, which were all noted to facilitate GOC conversation development.

Background: Home-based palliative care is care of the patient in their home, while doctors and other healthcare providers (HCPs) make visits as required. Family involvement naturally cultivates a relationship between HCPs and the family. Once the patient dies and home-based palliative care ends, this relationship is abruptly terminated, which may be challenging to both the family and the HCPs. The objective of this study was to understand the thoughts and opinions of HCPs and families on their encountered loss of relationship at the end of home-based palliative care. Methods: Perceptions of 63 participants (32 HCPs and 31 family members) were explored using semi-structured interviews and the qualitative research methodologies of grounded theory. HCPs were interviewed at the Temmy Latner Centre for Palliative Care (TLCPC), a home-based palliative care group of physicians, and 2 hospitals in Toronto, while family members were recruited from TLCPC’s records of deceased patients. Results: Six overarching themes, relating to HCP-family relationship dynamics, the experience of loss of relationship, and potential solutions, were derived from the data: (I) home palliative care is intimate; (II) dissatisfaction is experienced with abrupt relationship ending; (III) families benefit from open communication, especially after patient death; (IV) HCPs recognize the insufficiency in bereavement resources; (V) benefits are recognized for a system to ease loss of relationship, and lastly; (VI) challenges with introducing such a system concern HCP. Conclusions: Overall, families and HCPs do not like the loss of relationship post-patient death, and recognize the potential benefits of an approach that would allow for communication going forward.

ObjectivesDespite the escalating public health emergency related to opioid-related deaths in Canada and the USA, opioids are essential for palliative care (PC) symptom management.Opioid safety is the prevention, identification and management of opioid-related harms. The Delphi technique was used to develop expert consensus recommendations about how to promote opioid safety in adults receiving PC in Canada and the USA.MethodsThrough a Delphi process comprised of two rounds, USA and Canadian panellists in PC, addiction and pain medicine developed expert consensus recommendations. Elected Canadian Society of Palliative Care Physicians (CSPCP) board members then rated how important it is for PC physicians to be aware of each consensus recommendation.They also identified high-priority research areas from the topics that did not achieve consensus in Round 2.ResultsThe panellists (Round 1, n=23; Round 2, n=22) developed a total of 130 recommendations from the two rounds about the following six opioid-safety related domains: (1) General principles; (2) Measures for healthcare institution and PC training and clinical programmes; (3) Patient and caregiver assessments; (4) Prescribing practices; (5) Monitoring; and (6) Patients and caregiver education. Fifty-nine topics did not achieve consensus and were deemed potential areas of research. From these results, CSPCP identified 43 high-priority recommendations and 8 high-priority research areas.ConclusionsUrgent guidance about opioid safety is needed to address the opioid crisis. These consensus recommendations can promote safer opioid use, while recognising the importance of these medications for PC symptom management.

Background Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. Objective The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. Methods The study was a hybrid type II mixed methods design to simultaneously evaluate Loop’s clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. Results We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop’s potential value for engaging the patient and caregiver, and for improving communication within the patient’s circle of care, Loop’s relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. Conclusions Fundamental structural and implementation challenges persist toward realizing Loop’s potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.

Changes in healthcare over the last 10–15 years have increased burnout rate among young physicians and also spawned a number of side gigs, including nonmedical avenues of work. Direct primary care and concierge medicine provide other options for physicians wanting to work outside “the system.” This chapter discusses the concept of both alternatives to the traditional insurance model.

Additional file 1: Figure 1. Cohort creation figure. Table 1. Median/IQR cost per day in each level of palliative involvement and hospital length of stay.

BACKGROUND Communication within the circle of care is central to coordinated, safe, and effective care; yet patients, caregivers, and health care providers often experience poor communication and fragmented care. Through a sequential program of research, the Loop Research Collaborative developed a web-based, asynchronous clinical communication system for team-based care. Loop assembles the circle of care centered on a patient, in private networking spaces called Patient Loops. The patient, their caregiver, or both are part of the Patient Loop. The communication is threaded, it can be filtered and sorted in multiple ways, it is securely stored, and can be exported for upload to a medical record. OBJECTIVE The objective of this study was to implement and evaluate Loop. The study reporting adheres to the Standards for Reporting Implementation Research. METHODS The study was a hybrid type II mixed methods design to simultaneously evaluate Loop’s clinical and implementation effectiveness, and implementation barriers and facilitators in 6 health care sites. Data included monthly user check-in interviews and bimonthly surveys to capture patient or caregiver experience of continuity of care, in-depth interviews to explore barriers and facilitators based on the Consolidated Framework for Implementation Research (CFIR), and Loop usage extracted directly from the Loop system. RESULTS We recruited 25 initiating health care providers across 6 sites who then identified patients or caregivers for recruitment. Of 147 patient or caregiver participants who were assessed and met screening criteria, 57 consented and 52 were enrolled on Loop, creating 52 Patient Loops. Across all Patient Loops, 96 additional health care providers consented to join the Loop teams. Loop usage was followed for up to 8 months. The median number of messages exchanged per team was 1 (range 0-28). The monthly check-in and CFIR interviews showed that although participants acknowledged that Loop could potentially fill a gap, existing modes of communication, workflows, incentives, and the lack of integration with the hospital electronic medical records and patient portals were barriers to its adoption. While participants acknowledged Loop’s potential value for engaging the patient and caregiver, and for improving communication within the patient’s circle of care, Loop’s relative advantage was not realized during the study and there was insufficient tension for change. Missing data limited the analysis of continuity of care. CONCLUSIONS Fundamental structural and implementation challenges persist toward realizing Loop’s potential as a shared system of asynchronous communication. Barriers include health information system integration; system, organizational, and individual tension for change; and a fee structure for health care provider compensation for asynchronous communication.

Background: Socioeconomic disparities in home death have been noted in the literature. Home-based palliative care increases access to home death and has been suggested as a means to decrease these disparities. Aim: Our study examines the association between socioeconomic status and other demographic factors on place of death in a population receiving home palliative care in Toronto, Canada. Design: This is a retrospective chart review of patients who died between August 2013 and August 2015 when admitted to a home-based palliative care service. Multivariate multinomial regression examined the relationship between the place of death (home, palliative care unit [PCU], or acute care) with age, gender, primary diagnosis, and income quintile. Bivariate logistic regression was fitted to calculate the odds ratio (OR) and probability of preference for home death. Setting/Participants: Patients receiving home-based palliative care services from the Latner Centre for Palliative Care in Toronto, Canada. Results: A total of 2066 patients were included in multivariate analysis. Patients in the lowest income quintile had increased odds of dying in acute care (OR = 2.41, P < .001) or dying in PCU (OR = 1.64, P = .008) than patients in highest income quintile. Patients in the next lowest income quintiles 2 and 3 were also more likely to die in acute care. The rate of preference for home death was significantly lower in the lowest income quintile (OR = 0.47, P = .0047). Conclusions: Patients in lower income quintiles are less likely to die at home, despite receiving home-based palliative care, although they may also be less likely to prefer home death.

Medical Assistance in Dying (MAiD) was legalized in Canada in June 2016. There are no documented experiences of MAiD provision within a home palliative care program. The majority of palliative care physicians in Canada object to MAiD. As one of the largest home-based palliative care providers in Canada, the Temmy Latner Centre for Palliative Care (TLCPC) developed processes to implement MAiD provision within a home palliative care team with diverse attitudes toward MAiD.To demonstrate the feasibility of providing MAiD within a home palliative care setting and describe the population that received MAiD in the first year of legalization.A retrospective chart review identified patients who received or were assessed for MAiD and had a known outcome between June 17, 2016 and June 30, 2017.Patients receiving home-based palliative care.Data extracted included age, gender, primary diagnosis, length of time receiving home-based palliative care, and final clinical outcome.Of the 45 patients who were assessed for MAiD, 27 (60%) received MAiD and 18 (40%) did not. The mean age was 74 (range 20-95), 24 (53%) were male, and 33 (73%) had cancer as a primary diagnosis. These 27 patients represent 1.2% of our total patient population during this time period.MAiD was accessed by 1.2% of the patients within a home palliative care center in the first year of legalization. Patient demographics were consistent with those documented elsewhere. The TLCPC process accommodates the diverse viewpoints of clinicians and emphasizes continuity of palliative care provision.

Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology.We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPECAn integrated knowledge translation approach was used with pre-/posttest evaluation of care quality. Setting/Subjects/Measurements: Regional Teams of 3-6 health professionals based at 15 pediatric oncology programs in Canada became EPEC-Pediatrics Trainers who taught the curriculum to health professionals (learners) and implemented quality improvement (QI) projects. Trainers recorded the number of learners at each education session and progress on QI goals. Learners completed knowledge surveys. Care quality was assessed through surveys with a cross-sectional sample of children with cancer and their parents about symptoms, quality of life, and care quality plus reviews of deceased patients' health records.Seventy-two Trainers taught 3475 learners; the majority (96.7%) agreed that their PPC knowledge improved. In addition, 10/15 sites achieved practice change QI goals. The only improvements in care quality were an increased number of days from referral to PPC teams until death by a factor of 1.54 (95% confidence interval [CI] = 1.17-2.03) and from first documentation of advance care planning until death by a factor of 1.50 (95% CI = 1.06-2.11), after adjusting for background variables.While improvements in care quality were only seen in two areas, our approach was highly effective in achieving knowledge dissemination, knowledge improvement, and practice change goals.

Background Home-based palliative care is care of the patient in the comfort of their own home, while doctors and other healthcare providers make visits as required. Family involvement naturally cultivates a relationship between healthcare providers and the family. Once the patient dies and care ends, this relationship is abruptly terminated, which may be challenging to both parties. This study explored healthcare providers’ and family members’ thoughts regarding the loss of relationship following home-palliative care, how to mitigate this loss, and their opinions on a system that allows for contact post patient death. Methods Perceptions of 63 participants (32 healthcare providers and 31 family members) were explored using semi-structured interviews and qualitative research methodology, around three months after patient death. Healthcare providers were interviewed primarily at a home-based palliative physician group (TLCPC), and at two hospitals, while family members were recruited from the deceased patients of TLCPC physicians. Results Six overarching themes emerged: Caregivers and families have a mutual appreciation and recognition of the intimacy of home-palliative care; both parties expressed awareness and dissatisfaction with the abrupt ending of relationship; open and clear communication with healthcare providers is beneficial to family members, especially after patient death; healthcare providers discern the insufficiency of resources and gap in transition to bereavement services for grieving families; a proposed system to mitigate loss of relationship has multiple perceived benefits; logistical challenges and boundary issues for a system raise concern in healthcare providers. Conclusions The findings obtained in this study provide recognition of how caregivers and families perceive the dynamics of home-palliative care, and their thoughts regarding the loss of relationship. Overall, families and healthcare providers do not like this halt in contact, and recognise the potential benefits of an approach that would allow for communication going forward.

BACKGROUND Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and result in high rates of unplanned acute care visits. Remote monitoring tools may improve symptom management in this patient population. OBJECTIVE This study aimed to design a prototype tool to facilitate remote management of chemotherapy-related toxicities. METHODS User needs were assessed using a participatory, user-centered design methodology that included field observation, interviews, and focus groups, and then analyzed using affinity diagramming. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians, and pharmacists in Ontario, Canada. Overarching themes informed development of a Web-based prototype, which was further refined over 2 rounds of usability testing with end users. RESULTS Overarching themes were derived from needs assessments, which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible and timely information, and integration into existing systems. In addition, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a Web-based prototype (bridges), which included toxicity tracking, self-management advice, and HCP communication functionalities. Usability testing with 11 patients and 11 HCPs was generally positive; however, identified challenges included tool integration into existing workflows, need for standardized toxicity self-management advice, issues of privacy and consent, and patient-tailored information. CONCLUSIONS Web-based tools integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities. Attention to the integration of new electronic tools into self-care by patients and practice was a strong theme for both patients and HCP participants and is a key issue that needs to be addressed for wide-scale adoption.

Background Opioid prescribing has been increasingly scrutinized among noncancer patients. As an unintended consequence, opioids may be underprescribed for cancer patients. The purpose of this study was to compare trends in opioid prescribing in younger adults with and without cancer. Methods From 2004 to 2013, Ontario residents aged 18–64 years eligible for government paid pharmacare were annually stratified into three groups: no cancer history, cancer diagnosis more than five years ago, and cancer diagnosis five years ago and less. We evaluated time trends in two annual outcomes: opioid prescription rate and mean daily opioid dose. Results In 2013, 800,371 individuals were eligible for this study (3% with recent cancer and 2% with remote cancer). Across all years, compared with noncancer patients, overall opioid prescription rates were 43% and 26% higher for those with recent and remote cancer, respectively. Overall, a 1% relative annual increase was seen in those without cancer and a 1% decrease was seen in those with a recent cancer. Changes in prescription rates varied with drug class and cancer group. Notably, long-acting opioids had a relative annual increase of 7% in noncancer patients vs. 2% in recent cancer patients. Immediate-release combination agents had a relative annual decrease of 2% for all cancer groups. Trends in mean daily dose were similar between groups, but by 2013, they were lowest in recent cancer patients, regardless of drug class. Interpretation Secular trends in opioid prescribing affect cancer and noncancer patients similarly. Further research is required to assess the potential impact on symptom management.

Purpose: Previous work in Ontario demonstrated that 33% of patients with cancer with severe pain did not receive opioids at the time of their pain assessment. With efforts to increase symptom screening and management since then, the objective of this study was to examine temporal trends in opioid prescribing. Methods: The cohort was comprised of Ontario residents ≥ 65 years of age with a cancer history who were eligible for the government pharmacare program and had a pain assessment using the Edmonton Symptom Assessment System. Use of the Edmonton Symptom Assessment System is part of a provincial initiative to screen ambulatory patients with cancer for symptoms. Annually between 2007 and 2013, we used the date of an individual’s highest pain score as the index date to calculate annual opioid prescription rates for claims within 30 days before and up to 7 days after the index date. A logistic regression model evaluated the association between index year and odds of receiving an opioid prescription. Results: During the study period, the number of individuals undergoing symptom assessment annually increased more than eight-fold. Opioid prescription rates were directly related to pain scores, but there was an annual 5% relative decrease in the odds of receiving an opioid prescription during the era from 2009 to 2013. Conclusion: We are doing better at screening for pain, but this has not led to an increase in analgesic intervention for those identified. Additional work is required to determine what opioid prescribing rate is optimal to ensure we are not missing opportunities to improve patient comfort.

To outline symptom management in, as well as offer a home-based protocol for, patients with advanced heart failure (HF).The termsEducating patients about advanced HF and helping them understand their illness and illness trajectory can foster end-of-life discussions. Home-based care of patients with advanced HF that includes optimizing diuresis can lead to improved symptom management. It is also hoped that it can reduce both patient and health care system burden and result in greater health-related quality of life for patients with advanced HF.This article provides an overview of how to manage common symptoms in patients with advanced HF. The home diuresis protocol with guidelines for oral and intravenous diuretic therapy is available at

Purpose: To describe prevalence and characteristics associated with family physician and general practitioner (FP/GP) provision of home palliative care (HPC). Methods: We surveyed FP/GPs in an urban health region of Ontario, Canada, to determine their current involvement in HPC, the nature of services provided, and perceived barriers and enablers. Results: A total of 1439 surveys were mailed. Of the 302 FP/GP respondents, 295 provided replies regarding engagement in HPC: 101 of 295 (33%) provided HPC, 76 (26%) were engageable with further support, and 118 (40%) were not engageable regardless of support. The most substantial barrier was time to provide home visits (81%). Engaged FP/GPs were most likely to be working with another physician providing HPC ( P < .0001). Engageable FP/GPs were younger ( P = .007) and placed greater value on improved remuneration ( P < .001) than the other groups. Nonengageable physicians were most likely to view time as a barrier ( P < .0001) and to lack interest in PC ( P = .03). Conclusion: One-third of FP/GPs provide HPC. A cohort of younger physicians could be engageable with adequate support. Integrated practices including collaboration with specialist PC colleagues should be encouraged and supported.

In the advanced cancer context, care coordination is often inadequate, leading to suboptimal continuity of care. We evaluated an electronic web-based tool which assembles the patient, their caregivers, and their healthcare providers in a virtual space for team-based communication. We sought to understand participant perceptions on electronic communication in general and the added value of the new tool in particular. We conducted a qualitative descriptive study with participants (patients, caregivers, cancer physicians) who participated in a 3-month pilot trial evaluating the tool. Interviews were thematically analyzed and the perspectives from patients, caregivers, and cancer physicians were triangulated. Interviews from six patients, five of their caregivers, and seven cancer physicians conducted alongside monthly outcome assessments were analyzed. We identified five themes relating participants’ perspectives on electronic communication to their experience of care: (1) apparent gaps in care, (2) uncertainty in defining the circle of care, (3) relational aspects of communication, (4) incongruence between technology and social norms of patient-physician communication, and (5) appreciation but apprehension about the team-based communication tool for improving the experience of care. The potential of tools for electronic communication to bring together a team of healthcare providers with the patient and caregivers is significant but may pose new challenges to existing team structure and interpersonal dynamics. Patients and physicians were worried about the impact that electronic communication may have on the patient-physician relationship. Implementation approaches, which build on the relationship and integrate the team as a whole, could positively position electronic communication to enhance the team-based care.

Context Health care is increasingly focused on end-of-life care outcomes, but relatively little attention has been paid to how the dying experience is subjectively evaluated by those involved in the process. Objectives To assess the quality of death of patients with cancer and examine its relationship to receipt of specialized palliative care and place of death. Methods A total of 402 deaths of cancer patients treated at a university-affiliated hospital and home palliative care program in downtown Toronto, Ontario, Canada were evaluated by bereaved caregivers eight to 10 months after patient death with the Quality of Dying and Death (QODD) questionnaire. Caregivers also reported on bereavement distress, palliative care services received, and place of death. Results Overall quality of death was rated "good" to "almost perfect" by 39% and "neither good nor bad" by 61% of caregivers. The lowest QODD subscale scores assessed symptom control (rated "terrible" to "poor" by 15% of caregivers) and transcendence over death-related concerns (rated "terrible" to "poor" by 19% of caregivers). Multivariable analyses revealed that late or no specialized palliative care was associated with worse death preparation, and home deaths were associated with better symptom control, death preparation, and overall quality of death. Conclusion The overall quality of death was rated positively for the majority of these cancer patients. Ratings were highest for home deaths perhaps because they are associated with fewer complications and/or a more extensive support network. For a substantial minority, symptom control and death-related distress at the end of life were problematic, highlighting areas for intervention.

The literature about Chinese attitudes toward death and dying contains frequent references to strong taboos against open discussion about death; consequently, there is an assumption that dying at home is not the preferred option. This focused ethnographic study examined the palliative home care experiences of 4 Chinese immigrants with terminal cancer, their family caregivers, and home care nurses and key informant interviews with 11 health care providers. Three main themes emerged: (1) the many facets of taboo; (2) discursive tensions between patient-centered care and cultural competence; and (3) rethinking language barriers. Thus, training on cultural competence needs to move away from models that portray cultural beliefs as shared, fixed patterns, and take into account the complicated reality of everyday care provision at end of life in the home.

Background: Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and result in high rates of unplanned acute care visits. Remote monitoring tools may improve symptom management in this patient population. Objective: This study aimed to design a prototype tool to facilitate remote management of chemotherapy-related toxicities. Methods: User needs were assessed using a participatory, user-centered design methodology that included field observation, interviews, and focus groups, and then analyzed using affinity diagramming. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians, and pharmacists in Ontario, Canada. Overarching themes informed development of a Web-based prototype, which was further refined over 2 rounds of usability testing with end users. Results: Overarching themes were derived from needs assessments, which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible and timely information, and integration into existing systems. In addition, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a Web-based prototype (bridges), which included toxicity tracking, self-management advice, and HCP communication functionalities. Usability testing with 11 patients and 11 HCPs was generally positive; however, identified challenges included tool integration into existing workflows, need for standardized toxicity self-management advice, issues of privacy and consent, and patient-tailored information. Conclusions: Web-based tools integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities. Attention to the integration of new electronic tools into self-care by patients and practice was a strong theme for both patients and HCP participants and is a key issue that needs to be addressed for wide-scale adoption.

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.

Previous studies have reported survival estimates in palliative populations using the Palliative Performance Scale (PPS) (where 100=best status, 0=death). However, little research has examined the association of the PPS with hazard of death in ambulatory populations.We examined the association between performance status and the instantaneous hazard of death in ambulatory cancer patients, using longitudinal PPS scores.This retrospective, population-based cohort study included cancer outpatients who had at least one PPS assessment completed between 2007 and 2009. PPS scores were recorded opportunistically by health care providers at clinic or home care visits. We used a Cox proportional hazards model to determine the relative hazard of death based on repeated measures of PPS score, while controlling for other covariates.Among 11,342 qualifying cancer patients, there were 54,207 PPS assessments. The distribution of PPS scores at first assessment were 23%, 56%, 20%, and 1% for PPS scores of 100, 90-70, 60-40, and ≤ 30, respectively. A quarter of the cohort died within 6 months of the first assessment. The relative hazard of death increases by a factor of 1.69 (95% confidence interval [CI]: 1.72-1.67) for each 10-point decrease in PPS score. Thus the hazard of death increases by 8.2 (1.69(4)) times for a person with PPS score of 30 compared with a person with a score of 70.The PPS was significantly associated with hazard of death in ambulatory cancer patients; the relative hazard of death increased based on lowered PPS scores. Providers should consider broadening its use to include patients throughout their disease trajectory.

Background: The management of patients with complex care needs requires the expertise of health care providers from multiple settings and specialties. As such, there is a need for cross-setting, cross-disciplinary solutions that address deficits in communication and continuity of care. We have developed a Web-based tool for clinical collaboration, called Loop, which assembles the patient and care team in a virtual space for the purpose of facilitating communication around care management. Objective: The objectives of this pilot study were to evaluate the feasibility of integrating a tool like Loop into current care practices and to capture preliminary measures of the effect of Loop on continuity of care, quality of care, symptom distress, and health care utilization. Methods: We conducted an open-label pilot cluster randomized controlled trial allocating patients with advanced cancer (defined as stage III or IV disease) with ≥3 months prognosis, their participating health care team and caregivers to receive either the Loop intervention or usual care. Outcome data were collected from patients on a monthly basis for 3 months. Trial feasibility was measured with rate of uptake, as well as recruitment and system usage. The Picker Continuity of Care subscale, Palliative care Outcomes Scale, Edmonton Symptom Assessment Scale, and Ambulatory and Home Care Record were patient self-reported measures of continuity of care, quality of care, symptom distress, and health services utilization, respectively. We conducted a content analysis of messages posted on Loop to understand how the system was used. Results: Nineteen physicians (oncologists or palliative care physicians) were randomized to the intervention or control arms. One hundred twenty-seven of their patients with advanced cancer were approached and 48 patients enrolled. Of 24 patients in the intervention arm, 20 (83.3%) registered onto Loop. In the intervention and control arms, 12 and 11 patients completed three months of follow-up, respectively. A mean of 1.2 (range: 0 to 4) additional healthcare providers with an average total of 3 healthcare providers participated per team. An unadjusted between-arm increase of +11.4 was observed on the Picker scale in favor of the intervention arm. Other measures showed negligible changes. Loop was primarily used for medical care management, symptom reporting, and appointment coordination. Conclusions: The results of this study show that implementation of Loop was feasible. It provides useful information for planning future studies further examining effectiveness and team collaboration. Numerically higher scores were observed for the Loop arm relative to the control arm with respect to continuity of care. Future work is required to understand the incentives and barriers to participation so that the implementation of tools like Loop can be optimized. Trial Registration: ClinicalTrials.gov NCT02372994; https://clinicaltrials.gov/ct2/show/NCT02372994 (Archived by WebCite at http://www.webcitation.org/6r00L4Skb).

Background: We describe the development and evaluation of a secure Web-based system for the purpose of collaborative care called Loop. Loop assembles the team of care with the patient as an integral member of the team in a secure space. Objective: The objectives of this paper are to present the iterative design of the separate views for health care providers (HCPs) within each patient’s secure space and examine patients’, caregivers’, and HCPs’ perspectives on this separate view for HCP-only communication. Methods: The overall research program includes cycles of ethnography, prototyping, usability testing, and pilot testing. This paper describes the usability testing phase that directly informed development. A descriptive qualitative approach was used to analyze participant perspectives that emerged during usability testing. Results: During usability testing, we sampled 89 participants from three user groups: 23 patients, 19 caregivers, and 47 HCPs. Almost all perspectives from the three user groups supported the need for an HCP-only communication view. In an earlier prototype, the visual presentation caused confusion among HCPs when reading and composing messages about whether a message was visible to the patient. Usability testing guided us to design a more deliberate distinction between posting in the Patient and Team view and the Health Care Provider Only view at the time of composing a message, which once posted is distinguished by an icon. Conclusions: The team made a decision to incorporate an HCP-only communication view based on findings during earlier phases of work. During usability testing we tested the separate communication views, and all groups supported this partition. We spent considerable effort designing the partition; however, preliminary findings from the next phase of evaluation, pilot testing, show that the Patient and Team communication is predominantly being used. This demonstrates the importance of a subsequent phase of the clinical trial of Loop to validate the concept and design. [JMIR Hum Factors 2016;3(1):e12]

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.

Symptom cluster analysis is a new frontier of research in symptom management. This study clustered patients by their symptom profiles to identify subgroups that may be at higher risk for poor quality of life (QOL) and that may, therefore, benefit most from targeted interventions.Longitudinal study of metastatic cancer patients using the Edmonton Symptom Assessment Scale (ESAS). We generated two-, three-, and four-cluster subgroups and examined the relationship of cluster membership with patient outcomes. To address the problem of missing longitudinal data, we developed a novel outcome variable (QualTime) that measures both QOL and time in study.Two hundred and twenty-one patients with a mean Palliative Performance Scale (PPS) of 59.1 were enrolled. The three-cluster model was chosen for further analysis. The low-burden subgroup had all low severity symptom scores. The intermediate subgroup separates from the low-burden group on the "debility" profile of fatigue, drowsiness, appetite, and well-being. The high-burden group separates from the intermediate-burden group on pain, depression, and anxiety. At baseline, PPS (p=0.0003) and cluster membership (p0.0001) contributed significantly to global QOL. In univariate analysis, cluster membership was related to the longitudinal outcome, QualTime. In a multivariate model, the relationship of PPS to QualTime was still significant (p=0.0002), but subgroup membership was no longer significant (p=0.1009).PPS is a stronger predictor of the longitudinal variable than cluster subgroups; however, cluster subgroups provide a target for clinical interventions that may improve QOL.

The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives — or, during the period from diagnosis to death, if briefer — in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002–2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.

Purpose Ontario's cancer system is unique because it has implemented two standardized assessment tools population-wide to improve care: the Edmonton Symptom Assessment System (ESAS) measures severity of nine symptoms (scale 0 to 10; 10 indicates the worst) and the Palliative Performance Scale (PPS) measures performance status (scale 0 to 100; 0 indicates death). This article describes the trajectory of ESAS and PPS scores 6 months before death. Patients and Methods Observational cohort study of cancer decedents between 2007 and 2009. Decedents required ≥1 ESAS or PPS assessment in the 6 months before death for inclusion. Outcomes were the decedents' average ESAS and PPS scores per week before death. Results Ten thousand seven hundred fifty-two (ESAS) and 7,882 (PPS) decedents were included. The mean age was 65 years, half were female, and approximately 75% of assessments occurred in cancer clinics. Average PPS score declined slowly over the 6 months before death, starting at approximately 70 and ending at 40, declining more rapidly in the last month. For ESAS symptoms, average pain, nausea, anxiety, and depression scores remained relatively stable over the 6 months. Conversely, shortness of breath, drowsiness, well-being, lack of appetite, and tiredness increased in severity over time, particularly in the month before death. More than one third of the cohort reported moderate to severe scores (ie, 4 to 10) for most symptoms in the last month of life. Conclusion In this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns: increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions) for those symptoms. Future research should prioritize addressing symptoms that worsen over time.

Context Medical assistance in dying (MAiD) allows a practitioner to administer or prescribe medication for the purpose of ending a patient's life. In 2016, Canada was the latest country, following several European countries and American states, to legalize physician-assisted death. Although some studies report on physicians' attitudes toward MAiD or describe patient characteristics, there are few studies that explore the professional challenges faced by physicians who provide MAiD. Objectives The objective of the study was to explore the professional challenges faced by Canadian physicians who provide MAiD. Methods Sixteen physicians from across Canada who provide MAiD completed in-depth, semistructured telephone interviews. An inductive thematic analysis approach guided data collection and the iterative, interpretive analysis of interview transcripts. Three members of the research team systematically co-coded interview transcripts, and the emerging themes were developed with the broader research team. NVivo was used to manage the coded data. Results Participants described three challenges associated with providing MAiD: 1) their relationships with other MAiD providers were enhanced and relationships with objecting colleagues were sometimes strained; 2) they received inadequate financial compensation for time, and 3) they experienced increased workload, resulting in sacrifices to personal time. Although these providers did not intend to stop providing MAiD at the time of the interview, they indicated their concerns about whether they would be able to sustain this service over time. Conclusion Physicians described relationship, financial, and workload challenges to providing MAiD. We provide several recommendations to address these challenges and help ensure the sustainability of MAiD in countries that provide this service.

6520Background: Our research team previously found that the rate of opioid use in cancer patients surviving at least 5 years beyond diagnosis was 1.2 times higher compared with age-sex matched cont...

Malignant ascites (MA) is a distressing problem usually managed by repeated paracenteses. Paracentesis represents a meaningful time point in identifying patients with a specific presentation.The objective of this study is to examine symptom clustering in MA patients at paracentesis.Pre- and post-paracentesis, patients completed the Edmonton Symptom Assessment Scale revised to include abdominal distension and mobility (ESAS:AM) and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). This is a secondary analysis of data previously published, which reported on the validity of these surveys in MA. The symptoms were clustered using a hierarchical cluster analysis technique.In 37 cancer patients with complete data, there were two clusters common at both pre- and post-paracentesis time points: (1) depression-anxiety; (2) fatigue-appetite-wellbeing-mobility. Paracentesis resulted in an improvement in ESAS/AM total score (SDS/AM), abdominal distension, and shortness of breath (P0.001, threshold adjusted for multiple comparisons). On the EORTC QLQ-C30, the domains of role functioning and global quality of life (QOL) showed a trend towards improvement, while the domains of cognitive and emotional QOL declined significantly (P0.001, threshold adjusted for multiple comparisons), despite improvement in individual symptoms commonly attributed to ascites.This study is the first to describe symptom clusters in MA. Studies in MA should include measurement of the more global symptoms of fatigue, wellbeing, depression, and anxiety in addition to shortness of breath, abdominal distension, and mobility. Patients presenting with MA require a comprehensive assessment and a management plan that addresses QOL and the emotional domain symptoms shown to cluster in these patients.

Aims Since 1999, randomised clinical trials and meta-analyses have reported equal efficacy of pain relief from single- and multiple-fraction radiotherapy for bone metastases. A number of factors, including limited radiotherapy resources, waiting times, and patient convenience, suggest single fraction to be the treatment of choice for patients. However, international patterns of practice indicate that multiple fractions are still commonly used. This study examined whether dose-fractionation schemes used for the treatment of bone metastases at the Rapid Response Radiotherapy Program (RRRP) at the Odette Cancer Centre have changed since 1999. Materials and methods A retrospective review of the prospective RRRP database and hospital records were conducted for all patients treated with palliative radiotherapy for uncomplicated bone metastases at the RRRP in 1999 (or baseline), 2001, 2004 and from 1 January to 31 July 2005. Data were collected on patient demographics and clinical characteristics. Results Of the 693 patients, 65 and 35% were prescribed single fraction (predominantly single 8Gy) and multiple fractions (predominantly 20Gy/five fractions), respectively. The administration of single treatments generally increased over time, from 51% in 1999 to 66% in 2005 ( P =0.0001). On the basis of multiple logistic regression analyses, patients were more likely to be prescribed single-fraction radiotherapy if they had prostate cancer, had a poorer performance status, were treated to the limbs, hips, shoulders, pelvis, ribs, scapula, sternum, or clavicle (compared with the spine), were treated by a radiation oncologist who had been trained in earlier years, and who were treated after 1999. Conclusions Between 1999 and 2005, the use of single-fraction radiotherapy increased, corresponding to publications showing equal efficacy of pain relief between single and multiple fractions in the management of uncomplicated bone metastases. However, about a third of patients still received multiple fractions.

Background There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘Train-the-Trainer’ model. Methods/design In this study we are using a pre- post-test design and an integrated knowledge translation approach to assess the impact of the educational roll-out in four areas: 1) self-assessed knowledge of health professionals; 2) knowledge dissemination outcomes; 3) practice change outcomes; and 4) quality of palliative care. The quality of palliative care will be assessed using data from three sources: a) parent and child surveys about symptoms, quality of life and care provided; b) health record reviews of deceased patients; and c) bereaved parent surveys about end-of-life and bereavement care. After being trained in EPEC®-Pediatrics, ‘Master Facilitators’ will train ‘Regional Teams’ affiliated with 16 pediatric oncology programs in Canada. Each team will consist of three to five health professionals representing oncology, palliative care, and the community. Each team member will complete online modules and attend one of two face-to-face conferences, where they will receive training and materials to teach the EPEC®-Pediatrics curriculum to ‘End-Users’ in their region. Regional Teams will also choose a Tailored Implementation of Practice Standards (TIPS) Kit to guide implementation of a quality improvement project in their region; support will be provided via quarterly meetings with Co-Leads and via a listserv and webinars with other teams. Discussion Through this study we aim to raise the level of pediatric palliative care education amongst health care professionals in Canada. Our study will be a significant step forward in evaluation of the impact of EPEC®-Pediatrics both on dissemination outcomes and on care quality at a national level. Based on the anticipated success of our project we hope to expand the EPEC®-Pediatrics roll-out to health professionals who care for children with non-oncological life-threatening conditions. Electronic supplementary material The online version of this article (doi:10.1186/s12904-016-0085-8) contains supplementary material, which is available to authorized users.

Few studies have evaluated sex differences in the prevalence, severity, and correlates of fatigue at the end of life. The Brief Fatigue Inventory, McGill Quality of Life (MQOL) Questionnaire, and Karnofsky Performance Scale were administered at two-week intervals to 102 patients in a home palliative program. Outcomes in the sample and a regional palliative database (n=3,096) were analyzed. Cancer was the diagnosis in 96% of patients enrolled. Prevalence (P=0.0091) and severity of fatigue (P0.001) were higher in women at entry and in a repeated measures analysis over time (severity, P=0.0048). Performance status did not explain this difference. MQOL scores were inversely correlated to fatigue (Spearman coefficient=-0.48, P0.0001), but did not differ by sex. There was no difference in fatigue interference with MQOL in women and men. Although depression was higher in women (P=0.042) and related to fatigue at entry, it did not explain the sex difference in fatigue scores. Of the sociodemographic variables examined, neither education nor living situation contributed to the fatigue difference. This study shows a sex effect in the fatigue experienced by patients with advanced illnesses, which is not explained by baseline differences in performance, depression, MQOL, education, or living situation. That fatigue interference with MQOL is the same for men and women suggests that higher fatigue scores in women reflect not only a difference in the dimension of fatigue severity, but are also relevant in relation to impact on QOL. Assessment of fatigue should include the dimension of QOL important for both women and men.

Many cancer patients die in institutional settings despite their preference to die at home. A longitudinal, prospective cohort study was conducted to comprehensively assess the determinants of home death for patients receiving home-based palliative care. Data collected from biweekly telephone interviews with caregivers (n=302) and program databases were entered into a multivariate logistic model. Patients with high nursing costs (odds ratio [OR]: 4.3; confidence interval [CI]: 1.8–10.2) and patients with high personal support worker costs (OR: 2.3; CI: 1.1–4.5) were more likely to die at home than those with low costs. Patients who lived alone were less likely to die at home than those who cohabitated (OR: 0.4; CI: 0.2–0.8), and those with a high propensity for a home-death preference were more likely to die at home than those with a low propensity (OR: 5.8; CI: 1.1–31.3). An understanding of the predictors of place of death may contribute to the development of effective interventions that support home death.

Since the 1980s, randomized clinical trials showed that single fraction radiotherapy (RT) provided equal pain relief as multiple fractions of RT in the treatment of bone metastases.Using Medline, a literature search was conducted on patterns of practice among radiation oncologists and patients' preferences of dose fractionations for the treatment of bone metastases.Fifteen studies on international patterns of practice published between 1966 and May 2006 were identified. Surveys of Canadian radiation oncologists indicated approximately 85% preferred multiple fractions, most often as 20 Gray in five fractions (20 Gy/5). Surveys in the United States indicated that 30 Gy/10 was most commonly used, and 90-100% of these oncologists preferred multiple over single fraction RT. Multiple fractions were most commonly used in the United Kingdom, Western Europe, Australia and New Zealand, and India; however, more radiation oncologists in these countries would prescribe a single fraction than in North America. Three studies investigated patients' preferences of dose fractionations. In the Australian study, most patients favored single fraction RT as long as long-term outcomes were not compromised. Durability of pain relief was considered more important than short-term convenience factors. In the Singapore study, 85% of patients would choose extended courses of RT (24 Gy/6) compared to a single 8 Gy. In the Canadian study, most patients (76%) would choose a single 8 Gy over 20 Gy/5 of palliative RT due to greater convenience.Despite strong evidence supporting the use of single fraction RT, current practices and preferences favor multiple fractions for the treatment of bone metastases. This has significant implications for the overall quality of life, RT department workload, costs to healthcare systems, and patient convenience.

Background: Patients with complex health care needs require the expertise of many health care providers. Communication, collaboration, and patient-centered care positively impact care quality and patient outcomes. Few technologies exist that facilitate collaboration between providers across settings of care and also engage the patient. We developed a Web-based clinical collaboration system, Loop, to address this gap. The likelihood of a technological system’s uptake is associated with its perceived ease of use and perceived usefulness. We engaged stakeholders in the conceptualization and development of Loop in an effort to maximize its intuitiveness and utility. Objective: This study aimed to report end users’ perceptions about the ease of use and usefulness of Loop captured during usability tests of Loop. Methods: Participants represented three user types (patients, caregivers, and health care providers) recruited from three populations (adults with cancer, adolescents and young adults with cancer, and children with medical complexity). We conducted usability testing over three iterative cycles of testing and development in both laboratory-based and off-site environments. We performed a content analysis of usability testing transcripts to summarize and describe participant perceptions about the ease of use and usefulness of Loop. Results: Participants enjoyed testing Loop and were able to use the core functions—composing, posting, and reading messages—with little difficulty. They had difficulty interpreting certain visual cues and design elements or the purpose of some features. This difficulty negatively impacted perceived ease of use but was primarily limited to auxiliary features. Participants predicted that Loop could improve the efficiency and effectiveness of communication between care team members; however, this perceived usefulness could be compromised by disruptions to personal workflow such as additional time or task requirements. Conclusions: Loop was perceived to have value as a collaboration system; however, usability testing findings indicate that some design and functional elements need to be addressed to improve ease of use. Additionally, participant concerns highlight the need to consider how a system can be implemented so as to minimize impact on workflow and optimize usefulness. [JMIR Hum Factors 2018;5(1):e2]

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

64 Background: Clinical management of patients with advanced cancer is complex, involving specialized treatment and multiple healthcare providers in different settings. In this context, care coordination and sharing of contextual information is often inadequate, leading to suboptimal continuity of care. Electronic communication has the potential to address these gaps and engage patients in their own care. We studied a web-based tool which assembles the patient, their caregivers and their healthcare providers in a virtual space for team-based communication. We sought to understand participant perceptions on electronic communication in general, and the added value of the new tool in particular. Methods: We conducted a qualitative descriptive study with participants (patients with advanced cancer, caregivers, cancer physicians) who participated in a 3-month pilot trial evaluating the tool. Interviews were thematically analyzed and the perspectives from patients, caregivers and cancer physicians were triangulated. Results: We identified five themes relating participants’ perspectives on electronic communication to their experience of care: 1) apparent gaps in care; 2) uncertainty in defining the circle of care; 3) relational aspects of communication; 4) incongruence between technology and social norms of patient-physician communication; and 5) appreciation but apprehension about the role of the electronic communication tool for improving the experience of care. Conclusions: The potential of tools for electronic communication to bring together a team of healthcare providers with the patient and caregivers is significant but may pose new challenges to existing team structure and interpersonal dynamics. Patients and physicians were worried about the impact that electronic communication may have on the patient-physician relationship. Implementation approaches which build on the relationship, and integrate the team as a whole, could positively position electronic communication to enhance team-based care.

Context In 2007, Cancer Care Ontario introduced a provincial symptom screening program, which included pain, for cancer patients. Over this same time, opioid prescribing has been increasingly scrutinized among non-cancer patients. The study purpose was to see if opioid prescribing changed among older adults after 2007 in the context of changing opioid regulations, and whether effects were different among patients with a cancer history. Methods Ontario residents aged ≥65 years were identified from 2004 to 2013. Subjects were annually stratified into three groups: no cancer history, cancer diagnosis >5 years ago, and cancer diagnosis ≤5 years ago. We evaluated time trends by year for: 1) opioid prescription rate, comparing trends before and after 2007 and 2) mean daily opioid dose. Results Between 2004 and 2013, opioid prescribing was relatively constant for cancer patients with no observed change in trends after 2007. For non-cancer patients, there was a 2% relative annual increase during this period. Significant changes were seen for opioid sub-classes (e.g., decreasing use of long-acting oxycodone). These were similar for those with or without a history of cancer. Among all groups, changes in the mean daily dose over time were similar in all drug classes. Conclusion Overall prescribing rates for cancer patients aged ≥65 years remain unchanged over time, in spite of the introduction of a provincial symptom screening program. Decreasing prescription rates in some drug sub-classes were observed. The potential impact of these changes on the quality of symptom control for cancer patients needs further investigation.