Towards Better Health, Social, and Community-Based Services Integration for Patients with Chronic Conditions and Complex Care Needs: Stakeholders' Recommendations.

The objective was to report on issues related to patients with complex care needs and recommendations identified by 160 key participants at a summit in Quebec City about better integration of primary health care services for patients with chronic diseases and complex care needs. A descriptive qualitative approach was used. While focus groups were led by a facilitator, a rapporteur noted highlights and a research team member took independent notes. All notes were analyzed by using a thematic analysis according to an inductive method. Seven issues were identified, leading to the formulation of recommendations: (1) valuing the experience of the patient; (2) early detecting of a non-homogeneous patient population; (3) defining interprofessional collaboration based on patient needs; (4) conciliating services provided by clinical settings according to a registered clientele-based logic with the population-based logic; (5) working with the community sector; (6) aligning patient-oriented research values with existing challenges to primary care integration; and (7) promoting resource allocation consistent with targeted recommendations. The summit highlighted the importance of engaging all stakeholders in improvement of integrated care for patients with complex care needs. The resulting recommendations target shared priorities towards better health, social, and community-based services integration for these patients.

"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions.

BACKGROUND: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used. OBJECTIVES: To report on seniors' and caregivers' experiences of housing decisions. DESIGN: A cross-sectional study with a quantitative approach supplemented by qualitative data. SETTING: Sixteen health jurisdictions providing home care services, Quebec province, Canada. PARTICIPANTS: Two separate samples of seniors aged ≥ 65 years and informal caregivers of cognitively impaired seniors who had made a decision about housing. MEASUREMENTS: Information on preferred choice and actual choice about housing, role assumed in the decision, decisional conflict and decision regret was obtained through closed-ended questionnaires. Research assistants paraphrased participants' narratives about their decision-making experiences and made other observations in standardized logbooks. RESULTS: Thirty-one seniors (median age: 85.5 years) and 48 caregivers (median age: 65.1 years) were recruited. Both seniors and caregivers preferred that the senior stay at home (64.5% and 71.7% respectively). Staying home was the actual choice for only 32.2% of participating seniors and 36.2% of the seniors cared for by the participating caregivers. Overall, 93% seniors and 71% caregivers reported taking an active or collaborative role in the decision-making process. The median decisional conflict score was 23/100 for seniors and 30/100 for caregivers. The median decision regret score was the same for both (10/100). Qualitative analysis revealed that the housing decision was influenced by factors such as seniors' health and safety concerns and caregivers' burden of care. Some caregivers felt sad and guilty when the decision did not match the senior's preference. CONCLUSION: The actual housing decision made for seniors frequently did not match their preferred housing option. Advanced care planning regarding housing and better decision support are needed for these difficult decisions.

Effectiveness of an intervention to improve supportive care for family caregivers of patients with lung cancer: study protocol for a randomized controlled trial.

BACKGROUND: Family caregivers (FC) often experience higher distress levels than their relative with cancer. Many cancer centers have implemented distress screening programs, but most of them concentrate their efforts on patients, with little attention to their FC. To fill this gap, a pragmatic intervention has been designed to improve supportive care for FC of patients with lung cancer. This article describes the study protocol of a single-center randomized controlled trial to assess its effectiveness. METHODS/DESIGN: A total of 120 lung cancer patients and their FC are randomly assigned to the experimental group (exposed to intervention, N = 60) or to the control group (usual care, N = 60). The intervention includes: (1) systematic FC distress screening and problem assessment near their relative's cancer diagnosis, and every 2 months, (2) privileged contact with an oncology nurse (ON) away from the patient to address FC problems and (3) liaison by the ON with the family physician of FC reporting high distress (thermometer score ≥5/10), or problems relying on FP expertise. In both groups, FC, patient and process-of-care outcomes are measured at baseline and every 3 months, up to 9 months. The primary endpoint is FC distress measured by the Hospital Anxiety and Depression Scale (HADS) and the Psychological Distress Index used in the Quebec Health Survey (PDQHS). Individual interviews with 10 FC and a focus group with the oncology team will be conducted at the study end to further document the effectiveness of the intervention and its impact on quality of life (for FC) and practice organization (for the oncology team). DISCUSSION: This trial will assess the effectiveness of an innovative intervention based on interprofessional collaboration between primary care and oncology care. It targets a population in great need, yet often neglected, and has the potential to clearly improve patient and caregiver experience of cancer care, and reduce the burden of disease. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT02531464 . Registered on 15 July 2015.

Palliative care costs in Canada: A descriptive comparison of studies of urban and rural patients near end of life.

BACKGROUND: Significant gaps in the evidence base on costs in rural communities in Canada and elsewhere are reported in the literature, particularly regarding costs to families. However, it remains unclear whether the costs related to all resources used by palliative care patients in rural areas differ to those resources used in urban areas. AIM: The study aimed to compare both the costs that occurred over 6 months of participation in a palliative care program and the sharing of these costs in rural areas compared with those in urban areas. DESIGN: Data were drawn from two prior studies performed in Canada, employing a longitudinal, prospective design with repeated measures. SETTING/PARTICIPANTS: The urban sample consisted of 125 patients and 127 informal caregivers. The rural sample consisted of 80 patients and 84 informal caregivers. Most patients in both samples had advanced cancer. RESULTS: The mean total cost per patient was CAD 26,652 in urban areas, while it was CAD 31,018 in rural areas. The family assumed 20.8% and 21.9% of costs in the rural and urban areas, respectively. The rural families faced more costs related to prescription medication, out-of-pocket costs, and transportation while the urban families faced more costs related to formal home care. CONCLUSION: Despite the fact that rural and urban families assumed a similar portion of costs, the distribution of these costs was somewhat different. Future studies would be needed to gain a better understanding of the dynamics of costs incurred by families taking care of a loved one at the end of life and the determinants of these costs in urban versus rural areas.

Distribution and sharing of palliative care costs in rural areas of Canada.

Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients' families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 +/- 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.

Evaluating the economic loss of caregiving for palliative care patients.

OBJECTIVE: Our aim is to provide a unified measure of the economic burden faced by families during the palliative phase of care and to compare this measure to Statistics Canada's low-income cut-off. METHODS: Samples of palliative care patients living at home and their main informal caregivers were recruited in five Canadian urban regions. Interviews were performed every two weeks until the patient's passing, up to a maximum of six months. Participants were asked to provide details about their expenses and their absences from work that related specifically to the patient's condition. Income loss was evaluated for 192 family units. RESULTS: About 9 percent of families incurred economic losses in excess of 10 percent of their pre-study gross annual income; low-income status increased from 27 (before) to 40 (after). CONCLUSION: This is the first study to provide a unified measure of economic losses of caregiving that can be related to a publicly designated low-income threshold.

Exploring generalizability in a study of costs for community-based palliative care.

CONTEXT: Palliative care researchers face challenges recruiting and retaining study subjects. OBJECTIVES: This article investigates selection, study site, and participation biases to assess generalizability of a cost analysis of palliative care program (PCP) clients receiving care at home. METHODS: Study subjects' sociodemographic, geographic, survival, disease, and treatment characteristics were compared for the same year and region with those of three populations. Comparison I was with nonstudy subjects enrolled in the PCP to assess selection bias. Comparison II was with adults who died of cancer to assess study site bias. Comparison III was with study-eligible persons who declined to participate in order to assess participation bias. RESULTS: Comparison I: When compared with the other 1010 PCP clients, the 50 study subjects were on average 3.6 years younger (P=0.03), enrolled 70 days longer in the PCP (P<0.001), lived 6.7 km closer to the PCP (P<0.0001), and were more likely to have cancer (96.0% vs. 86.4%, P=0.05). Comparison II: Compared with all cancer decedents, the 45 study subjects who died of cancer were on average 7.0 years younger (P<0.001), lived 2.7 km closer to the PCP (P<0.001), and were more likely to have had radiotherapy (62.2% vs. 33.8%, P<0.0001) and medical oncology (28.9% vs. 14.8%, P=0.01) consultations. Comparison III: The 50 study subjects lived on average 42 days longer after their diagnosis (P=0.03) and 2.6 km closer to the PCP (P=0.01) than the 110 eligible persons who declined to participate. CONCLUSION: If the study findings are applied to populations that differ from the study subjects, inaccurate conclusions are possible.

The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study.

OBJECTIVE: This study aimed to highlight the trajectory of palliative care costs over the last five months of life in five urban centres across Canada. SUBJECTS: The study sample was comprised of 160 terminally ill patients and their main informal caregivers. RESEARCH DESIGN: A first interview took place in the patient's home, and subsequent follow-up interviews were conducted by telephone at two week intervals until the patient's passing. MEASURES: Participants were asked to provide information on the goods and services they used related to the patients' health condition, and on informal caregiving time. RESULTS: The overall costs of care gradually increased from the fifth to the last month of the patients' life. A large part of this cost increase was attributable to inpatient care. Among outpatient care costs the largest increase was observed for home care. Informal care costs were particularly high over the last 3 months of life. CONCLUSIONS: The knowledge gained from this study would be useful to policy makers when developing policies that could help families caring for a terminally ill loved one at home.

Costs associated with resource utilization during the palliative phase of care: a Canadian perspective.

OBJECTIVE: This study aimed to evaluate prospectively the resource utilization and related costs during the palliative phase of care in five regions across Canada. SUBJECTS: A cohort of 248 patients registered in a palliative care program and their main informal caregivers were consecutively recruited. RESEARCH DESIGN: A prospective research design with repeated measures was adopted. Interviews were conducted at two-week intervals until the patient s passing or up to a maximum of 6 months. MEASURES: The survey questions prompted participants to provide information on the types and number of goods and services they used, and who paid for these goods and services. RESULTS: The largest cost component for study participants was inpatient hospital care stays, followed by home care and informal caregiving time. In regard to cost sharing, the public health care system (PHCS), the family, and not-for-profit organizations (NFPO) sustained respectively 71.3%, 26.6%, and 1.6% of the mean total cost per patient. CONCLUSION: Such results provide a comprehensive picture of costs related to palliative care in Canada, by specifying the cost sharing between the PHCS, the family, and NFPO.

A new tool to assess family caregivers' burden during end-of-life care.

A significant challenge in virtually all caregiving studies is the measurement of burden, particularly within the specific context of palliative care. Existing tools in the caregiving field are not specifically designed for palliative care. A new tool, which specifically assesses family caregivers' (FC) burden within the palliative care context, was systematically developed and validated. This paper describes the steps taken to develop this tool and to examine its psychometric properties. The Caregiver's Burden Scale in End-of-Life Care (CBS-EOLC) is a 16-item self-report questionnaire. Internal consistency reliability: Cronbach's alpha = 0.95. Construct validity: Most inter-item associations were consistent with the conceptual framework that emerged from qualitative data analyses. Convergent validity: Interscale correlations: a) Zarit's Burden Interview (BI) = 0.72 (p < 0.01); b) POMS (fatigue) = 0.69 (p < 0.01); d) POMS (vigour) = -0.27 (p < 0.05). Social desirability was tested with the Crowne & Marlowe questionnaire (r = -0.24). Sensitivity: Associations were consistent with patients' functional status (ECOG) and FCs' unmet needs. The CBS-EOLC is a reliable and valid measure available in French and English.

The personal costs of caring for a child with a disability: a review of the literature.

This article presents a review of the literature published from 1989 to 2005 for articles that examined the economic burden incurred by families as a result of caring for a child with disabilities. The review was performed according to a comprehensive economic conceptual model developed by the authors and to the guidelines set out by Canadian Coordinating Office for Health Technology Assessment. The analysis indicated that the burden incurred by these families can be substantial, especially among families who care for a child with a severe disability. However, the variability and the quality of methods is such that the return on investment in knowledge of costs in this area is not as high as it could have been had methodological procedures been more standardized. A comprehensive and systematic approach is suggested for future research.