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1.
CMAJ Open ; 10(4): E945-E955, 2022.
Article in English | MEDLINE | ID: mdl-36319025

ABSTRACT

BACKGROUND: The Goals of Care Designation (GCD) is a medical order used to communicate the focus of a patient's care in Alberta, Canada. In this study, we aimed to determine the association between GCD type (resuscitative, medical or comfort) and resource use during hospitalization. METHODS: This was a prospective cohort study of newly hospitalized inpatients in Alberta conducted from January to September 2017. Participants were aged 55 years or older with chronic obstructive pulmonary disease, congestive heart failure, cirrhosis, cancer or renal failure; aged 55-79 years and their provider answered "no" to the "surprise question" (i.e., provider would not be surprised if the patient died in the next 6 months); or aged 80 years or older with any acute condition. The exposure of interest was GCD. The primary outcome was health care resource use during admission, measured by length of stay (LOS), intensive care unit hours, Resource Intensity Weights (RIWs), flagged interventions and palliative care referral. The secondary outcome was 30-day readmission. Adjusted regression analyses were performed (adjusted for age, sex, race and ethnicity, Clinical Frailty Scale score, comorbidities and city). RESULTS: We included 475 study participants. The median age was 83 (interquartile range 77-87) years, and 93.7% had a GCD at enrolment. Relative to patients with the resuscitative GCD type, patients with the medical GCD type had a longer LOS (1.42 times, 95% confidence interval [CI] 1.10-1.83) and a higher RIW (adjusted ratio 1.14, 95% CI 1.02-1.28). Patients with the comfort and medical GCD types had more palliative care referral (comfort GCD adjusted relative risk (RR) 9.32, 95% CI 4.32-20.08; medical GCD adjusted RR 3.58, 95% CI 1.75-7.33) but not flagged intervention use (comfort GCD adjusted RR 1.06, 95% CI 0.49-2.28; medical GCD adjusted RR 0.98, 95% CI 0.48-2.02) or 30-day readmission (comfort GCD adjusted RR 1.00, 95% CI 0.85-1.19; medical GCD adjusted RR 1.05, 95% CI 0.97-1.20). INTERPRETATION: Goals of Care Designation type early during admission was associated with LOS, RIW and palliative care referral. This suggests an alignment between health resource use and the focus of care communicated by each GCD.


Subject(s)
Critical Care , Patient Care Planning , Humans , Aged , Aged, 80 and over , Prospective Studies , Health Resources , Alberta
2.
Health Res Policy Syst ; 20(1): 61, 2022 Jun 06.
Article in English | MEDLINE | ID: mdl-35668462

ABSTRACT

BACKGROUND: Improving access to palliative care for Canadians requires a focused collective effort towards palliative and end-of-life care advocacy and policy. However, evolution of modern palliative care in Canada has resulted in stakeholders working in isolation. Identification of stakeholders is an important step to ensure that efforts to improve palliative care are coordinated. The purpose of this analysis is to collectively identify, classify and prioritize stakeholders who made contributions to national palliative care policies in Canada. METHODS: A systematic grey literature search was conducted examining policy documents (i.e. policy reports, legislative bills, judicial court cases) in the field of palliative care, end-of-life care and medical assistance in dying, at the national level, over the last two decades. Organizations' names were extracted directly or derived from individuals' affiliations. We then classified stakeholders using an adapted classification approach and developed an algorithm to prioritize their contributions towards the publication of these documents. RESULTS: Over 800 organizations contributed to 115 documents (41 policy reports, 11 legislative, 63 judicial). Discussions regarding national palliative care policy over the last two decades peaked in 2016. Stakeholder organizations contributing to national palliative care policy conversations throughout this period were classified into six types broadly representative of society. The ranking algorithm identified the top 200 prioritized stakeholder organizations. CONCLUSIONS: Stakeholders from various societal sectors have contributed to national palliative care conversions over the past two decades; however, not all the stakeholder organizations engaged to the same extent. The information is useful when a need arises for increased collaboration between stakeholders and can be a starting point for developing more effective engagement strategies.


Subject(s)
Palliative Care , Policy , Canada , Humans
3.
BMC Palliat Care ; 21(1): 116, 2022 Jun 29.
Article in English | MEDLINE | ID: mdl-35764991

ABSTRACT

BACKGROUND: The Serious Illness Care Program (SICP) increases quality of documentation about patients' values and priorities, but it is not known whether patient characteristics and goals of care are associated with the elements documented. The purpose of this study was to explore for associations between the quantity and type of elements documented after SICP conversations with patient characteristics and goals of care order. METHODS: Documentation of SICP conversations by internal medicine physicians with hospitalized patients was evaluated in a retrospective chart review between March 2018 to December 2019. The conversations occurred after SICP implementation in a Tertiary Hospital, Medical teaching unit which uses "Goals of Care Designation" (GCD) medical orders to communicate a patient's general intent, specific interventions, and preferred locations of care. A validated SICP codebook was used to determine the frequency of conversation elements documented for (1) Goals and Values; (2) Prognosis/illness understanding; (3) End-of-life care planning and (4) GCD/Life-sustaining treatment preferences. Univariate and multivariate generalized linear models were used to analyze associations between quantity of elements documented and patient characteristics (age, gender, frailty, language spoken and GCD). RESULTS: Of 175 SICP conversations documented, in the univariate analysis more goals and values were documented for patients who understand/speak English (0.89; 95% CI: 0.14 - 1.63) and more content was recorded for patients with a non-resuscitative GCD focus ("Medical": 2.42; 95% CI: 1.51 - 3.33; "Comfort": 1.06; 95% CI: 0.24 - 1.88) although not in all domains. In the multivariate analysis, controlling for age, gender, language and frailty, the association between content scores and GCD remained highly significant. Patients with a non-resuscitative GCD had higher total domain scores than those with a resuscitative GCD ("Medical": 1.27 95% CI: 0.42-2.13; "Comfort": 2.67, 95% CI:1.71-3.62). CONCLUSION: The type of content documented by physicians after a SICP conversation is associated with the patient's goals of care.


Subject(s)
Frailty , Critical Care , Critical Illness , Documentation , Hospitals , Humans , Patient Care Planning , Retrospective Studies
4.
Health Policy ; 126(6): 576-583, 2022 06.
Article in English | MEDLINE | ID: mdl-35120726

ABSTRACT

CONTEXT: In 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together. METHODS: We employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed. FINDINGS: Fifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies. CONCLUSIONS: Implementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.


Subject(s)
Palliative Care , Stakeholder Participation , Canada , Humans , Policy Making
5.
Article in English | MEDLINE | ID: mdl-34815250

ABSTRACT

OBJECTIVE: Advance care planning (ACP) and goals of care designation (GCD) performance indicators were developed and implemented across Alberta, Canada, and have been used to populate an electronic ACP/GCD dashboard. The study objective was to investigate whether users found the indicators and dashboard usable and acceptable. METHODS: This study employed a survey among a convenience sample of ACP/GCD community of practice members. The survey included questions on demographics, clinical practices and a validated usability questionnaire for the dashboard, System Usability Scale (SUS). RESULTS: Eighteen of 33 community of practice members (54.5%) answered the survey. Half of participants had a leadership or management role for ≥10 years. Most respondents (55.6%) had access to the ACP/GCD dashboard, and various ACP/GCD audit resources were used. Mean SUS was 70.83 (SD 19.72), which was above the threshold for acceptability (68). Approximately three-quarters of respondents (72.7%) found the indicators informative and meaningful for their practice, and over half (54.5%) were willing to use the dashboard and/or indicators to change their ACP/GCD practice. CONCLUSION: The nine indicators and dashboard were acceptable and usable for monitoring ACP/GCD performance. This set of indicators shows promise for describing and evaluating ACP/GCD uptake throughout a complex, multisector healthcare system.

6.
J Palliat Med ; 24(9): 1342-1350, 2021 09.
Article in English | MEDLINE | ID: mdl-33601982

ABSTRACT

Background: Lack of consistency in palliative care language can serve as barriers when designing, delivering, and accessing high-quality palliative care services. Objective: To develop a consensus-driven and evidence-based palliative care glossary for the Health Standards Organization Palliative Care Services National Standard of Canada (CAN/HSO 13001:2020). Design: Content analysis of the Palliative Care Services standard was used to refine a list of terms. Environmental scan and rapid review were used for identification of concepts and definitions. Two meetings of consultation based on the modified Delphi approach took place among a working committee consisting of 12 health care providers, administrators, academics, and patient/family representatives. Results: Palliative approach to care, quality of life, pain and symptom management, caregivers, palliative care, life-limiting illness, and serious illness were defined by modification/adoption of existing definitions. Conclusion: A glossary of key palliative care terms was developed and included in the HSO Palliative Care Services standard, which will facilitate communication using consistent language across care settings.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Caregivers , Consensus , Humans , Quality of Life
7.
Article in English | MEDLINE | ID: mdl-33579796

ABSTRACT

BACKGROUND: In 2014, the province of Alberta, Canada implemented a province-wide policy and procedures for advance care planning (ACP) and goals of care designation (GCD) across its complex, integrated public healthcare system. This study was conducted to identify and operationalise performance indicators for ACP/GCD to monitor policy implementation success and sustainment of ACP/GCD practice change. METHODS: A systematic review and environmental scan was conducted to identify potential indicators of ACP/GCD uptake (n=132). A purposive sample of ACP/GCD stakeholders was invited to participate in a modified Delphi study to evaluate, reduce and refine these indicators through a combination of face-to-face meetings and online surveys. RESULTS: An evidence-informed Donabedian by Institute of Medicine (IOM) framework was adopted as an organising matrix for the indicators in an initial face-to-face meeting. Three online survey rounds reduced and refined the 132 indicators to 18. A final face-to-face meeting operationalised the indicators into a measurable format. Nine indicators, covering 11 of the 18 Donabedian×IOM domains, were operationalised. CONCLUSIONS: Nine ACP/GCD evidence-informed indicators mapping to 11 of 18 Donabedian×IOM domains were endorsed, and have been operationalised into an online ACP/GCD dashboard. The indicators provide a characterisation of ACP/GCD uptake that could be generalised to other healthcare settings, measuring aspects related to ACP/GCD documentation, patient satisfaction and agreement between medical orders and care received. The final nine indicators reflect the stakeholders' expressed intent to strike a balance between comprehensiveness and feasibility within a large provincial healthcare system.

8.
Med Decis Making ; 41(3): 292-304, 2021 04.
Article in English | MEDLINE | ID: mdl-33451263

ABSTRACT

BACKGROUND: Patient videos about advance care planning (ACP; hereafter "Videos"), were developed to support uptake of provincial policy and address the complexity of patients' decision-making process. We evaluate self-administered ACP Videos, compare the studies' choice of outcomes, show correlations between the patients' ACP actions, and discuss implications for health care policy. OBJECTIVE: To test the efficacy of the Videos on patients' ACP/goals of care designation conversations with a health care provider. DESIGN, SETTING, AND PARTICIPANTS: Using a 2-arm, 1:1 randomized controlled trial, we recruited outpatients with a diagnosis of kidney failure, heart failure, metastatic lung, gastrointestinal, or gynecological cancer from 22 sites. Analysis followed the intention-to-treat principle. INTERVENTIONS: Videos describing the ACP process and illustrating the resuscitative, medical, and comfort levels of care. MAIN OUTCOMES AND MEASURES: The primary outcome was the proportion of participants who reported having an ACP/goals of care designation (GCD) conversation with a health care provider by 3 mo. Outcomes were measured using the Behaviours in Advance Care Planning and Actions Survey, an online survey capturing ACP attitudes, processes, and actions. RESULTS: We analyzed 241 and 217 participants at baseline and 3 mo, respectively. The proportion of participants who had an ACP/GCD conversation with a health care provider by 3 mo was significantly different between study arms (46% intervention; 32% control; adjusted odds ratio, 1.83; P = 0.032). Adjusted for the quality of conversations, there was no significant difference. CONCLUSIONS: Videos as stand-alone tools do not engage individuals in high-quality ACP. Pragmatic trials are necessary to evaluate their impact on downstream outcomes when integrated into intentional, comprehensive conversations with a health care provider. Considering the strong correlation between 2 activities (physicians discussing options, patients telling health care providers preferences), policy should focus on empowering patients to initiate these conversations.


Subject(s)
Advance Care Planning , Heart Neoplasms , Renal Insufficiency , Communication , Humans , Outpatients
9.
Am J Hosp Palliat Care ; 38(8): 963-971, 2021 Aug.
Article in English | MEDLINE | ID: mdl-33030044

ABSTRACT

AIMS: This mixed methods longitudinal study evaluated Nav-CARE for feasibility, acceptability, ease of use, and satisfaction by older persons and volunteers. METHODS: Nine volunteer navigators visited 23 older persons with serious illness every 3 to 4 weeks for 1 year. Data were collected from volunteer navigators, and older person participants at baseline, during the year- long implementation and post implementation. RESULTS: Volunteer navigators and older persons reported Nav-CARE was easy to use, feasible and acceptable. The majority of older persons agreed or strongly agreed that they were satisfied with the navigation services (100%; 8/8), that navigation services were important to them (87%; 7/8), that they would recommend the program to someone else (87%; 7/8), and would participate in the program again (75%; 6/8). Similarly, volunteer navigators reported 100% (9/9) satisfaction with the program, 100% (9/9) would recommend it to others, and 67% (6/8) would participate again. CONCLUSIONS: Nav-CARE appears to be a feasible, acceptable, and satisfactory program for older persons with serious illness and volunteer navigators.


Subject(s)
Patient Navigation , Volunteers , Aged , Aged, 80 and over , Feasibility Studies , Humans , Longitudinal Studies , Palliative Care
10.
Oncologist ; 25(8): 722-728, 2020 08.
Article in English | MEDLINE | ID: mdl-32445194

ABSTRACT

INTRODUCTION: Early integration of palliative care (PC) with oncological care is associated with improved outcomes in patients with advanced cancer. Limited information exists on the frequency, timing, and predictors of PC consultation in patients receiving oncological care. The Cross Cancer Institute (CCI) is the sole tertiary cancer center serving the northern half of the Canadian province of Alberta, located in the city of Edmonton. The objectives of this study were to estimate the proportion of patients with advanced cancer at the CCI who received consultation by the CCI PC program and the comprehensive integrated PC program in Edmonton, and to determine the timing and predictors of consultation. MATERIALS AND METHODS: In this secondary analysis of routinely collected health data, adult patients who died between April 2013 and March 2014, and had advanced disease while under the care of a CCI oncologist, were eligible. Data from the Alberta Cancer Registry, electronic medical records, and Edmonton PC program database were linked. RESULTS: Of 2,253 eligible patients, 810 (36%) received CCI PC consultation. Median time between consultation and death was 2 months (range, 1.1-5.4). In multivariable logistic regression analysis, age, residence, income, cancer type, and interval from advanced cancer diagnosis to death influenced odds of receiving consultation. Among 1,439 patients residing in Edmonton, 1,121 (78%) were referred to the Edmonton PC program. CONCLUSION: A minority of patients with advanced cancer received PC consultation at the tertiary cancer center, occurring late in the disease trajectory. Frequency and timing of PC consultation varied significantly, according to multiple factors. IMPLICATIONS FOR PRACTICE: Clinical and demographic factors are associated with variations in frequency and timing of palliative care consultation at a cancer center and may, in some cases, reflect barriers to access that warrant attention.


Subject(s)
Neoplasms , Palliative Care , Adult , Canada , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Referral and Consultation , Retrospective Studies , Routinely Collected Health Data
11.
BMC Public Health ; 19(1): 679, 2019 Jun 03.
Article in English | MEDLINE | ID: mdl-31159829

ABSTRACT

BACKGROUND: In 2014, Alberta, Canada broke new ground in having the first provincial healthcare policy and procedure for advance care planning (ACP), the process of communicating and documenting a person's future healthcare preferences. However, to date public participation and awareness of ACP remains limited. The aim of this initiative was to elicit community group perspectives on how to help people learn about and participate in ACP. METHODS: Targeted invitations were sent to over 300 community groups in Alberta (e.g. health/disease, seniors/retirement, social/service, legal, faith-based, funeral planning, financial, and others). Sixty-seven participants from 47 community groups attended a "World Café". Participants moved between tables at fixed time intervals, and in small groups discussed three separate ACP-related questions. Written comments were captured by participants and facilitators. Each comment was coded according to Michie et al.'s Theoretical Domains Framework, and mapped to the Capability, Opportunity and Motivation behavior change system (COM-B) in order to identify candidate intervention strategies. RESULTS: Of 800 written comments, 76% mapped to the Opportunity: Physical COM-B component of behavior, reflecting a need for access to ACP resources. The most common intervention functions identified pertained to Education, Environmental Restructuring, Training, and Enablement. We synthesized the intervention functions and qualitative comments into eight recommendations for engaging people in ACP. These pertain to access to informational resources, group education and facilitation, health system processes, use of stories, marketing, integration into life events, inclusion of business partners, and harmonization of terminology. CONCLUSIONS: There was broad support for the role of community groups in promoting ACP. Eight recommendations for engaging the public in ACP were generated and have been shared with stakeholders.


Subject(s)
Advance Care Planning , Community Participation , Alberta , Awareness , Female , Health Services Needs and Demand , Humans , Male
12.
Am J Clin Oncol ; 41(9): 867-873, 2018 09.
Article in English | MEDLINE | ID: mdl-28368922

ABSTRACT

OBJECTIVES: Patients with advanced pancreatic cancer (APC) have a poor prognosis and experience a large burden of disease-related symptoms. Despite advancements in the treatment of APC, survival is dismal and controlling disease-related symptoms and maintaining quality of life is paramount. We hypothesize that an improvement in disease-related symptoms, and therefore, a clinical benefit, while on chemotherapy is a predictive marker in APC. MATERIALS AND METHODS: Patients 18 and older with APC diagnosed between January 1, 2005 and December 31, 2010 and treated at the Cross Cancer Institute were identified using the provincial cancer registry. Disease symptoms were assessed at baseline and clinical benefit while on chemotherapy was defined using a composite endpoint of improvement in patient-reported pain, opioid consumption, Eastern Cooperative Oncology Group performance status, and/or weight. Best radiologic response, progression-free survival (PFS), and overall survival (OS) were recorded. RESULTS: Of 103 patients, the median age was 64, 58% were male and 66% had metastatic disease. At baseline, the majority of patients reported pain (80%), opioid use (61%), or weight loss (71%). In total, 35 (34%) patients received a clinical benefit with treatment but only 6 (17%) of these patients experienced a radiologic response. The median PFS and OS were improved in patients who experienced a clinical benefit (6.6 vs. 4.6 mo; P=0.03 and 11.7 vs. 6.1 mo; P<0.0001, respectively). CONCLUSIONS: In patients with APC treated with chemotherapy, experiencing a clinical benefit was associated with improved PFS and OS. However, it did not appear to correlate with radiologic response to chemotherapy. Prospective studies are warranted to further investigate the prognostic and predictive value of clinical benefit and improvement in quality of life as measured by standardized tools, in APC.


Subject(s)
Antineoplastic Combined Chemotherapy Protocols/therapeutic use , Pancreatic Neoplasms/drug therapy , Quality of Life , Adult , Aged , Aged, 80 and over , Alberta , Female , Follow-Up Studies , Humans , Male , Middle Aged , Neoplasm Metastasis , Pancreatic Neoplasms/pathology , Prognosis , Retrospective Studies , Survival Rate
13.
J Palliat Med ; 21(S1): S20-S26, 2018 01.
Article in English | MEDLINE | ID: mdl-29283869

ABSTRACT

BACKGROUND: Effectively engaging Canadians to help improve the quality and delivery of healthcare to dying Canadians is a priority for healthcare administrators and policy makers. This report shares our evaluation and learnings, applying a series of strategies to encourage policy formation. The Palliative Care Matters consensus development conference held in Ottawa on November 7-9, 2016 brought together members of the public, stakeholders, scientific experts, and a lay panel of interested Canadians to examine Canadian public opinions on palliative care and question experts on how palliative care could be enhanced. OBJECTIVE: This report shares our evaluation and learnings applying a series of strategies to encourage policy formation. METHODS: An evaluation was conducted to measure the short, intermediate, and identify long-term outcomes of the conference. The overall performance of the conference for public engagement from November 2016 to mid June 2017 is shared. RESULTS AND CONCLUSION: The outcome of the conference was positive. It was attended and watched online by over 400 participants, received national print, radio and television coverage, and generated high exposure and engagement on social media. Survey results showed that the majority of steering committee, expert, and lay panel members felt a high level of engagement and agreed that the engagement process was successful. Evaluation will be conducted on an ongoing basis for at least another year.


Subject(s)
Palliative Care , Public Opinion , Quality Assurance, Health Care , Canada , Humans
14.
J Palliat Med ; 21(S1): S15-S19, 2018 01.
Article in English | MEDLINE | ID: mdl-29283873

ABSTRACT

BACKGROUND: This article details the methods used for a rapid literature review. OBJECTIVE: The eight scientific articles contained in this Palliative Care Matters supplemental issue synthesize and interpret evidence from the rapid review process outlined in this study. METHODS: The methods of the rapid review were adopted from the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-P) statement of PRISMA. RESULTS: The current article contains the literature search strategies for both gray and academic literature, resource eligibility criteria for inclusion and exclusion, and tables and figures to outline the literature search process, and delimit the number of resource items captured at each step in the process.


Subject(s)
Palliative Care , Research Design , Review Literature as Topic , Humans
15.
J Palliat Med ; 21(S1): S1-S8, 2018 01.
Article in English | MEDLINE | ID: mdl-29283875

ABSTRACT

OBJECTIVE: This article outlines the development and implementation of a consensus development conference (CDC). BACKGROUND: As a rapid method for data synthesis, a CDC affords a timely and methodic means of evaluating data to effect change in healthcare policy. METHODS: The CDC methodology was adopted for the Palliative Care Matters initiative due to its engagement with the public, scientific community, and palliative care stakeholders. RESULTS: It requires the involvement of seven key groups/roles to successfully effect change: a manager, steering committee, scientific expert panel, public lay panel, a lay-panel facilitator, a public audience, and the media for dissemination. DISCUSSION: This article also details the background information and guiding principles on which the Palliative Care Matters initiative was formed. A Canadian Reference Working Group was formed to develop the Palliative Care Matters guiding principles into six scientific questions. The scientific articles in this supplemental issue each present evidence and expert recommendations that speak to one of the Palliative Care Matters scientific questions.


Subject(s)
Consensus Development Conferences as Topic , Palliative Care , Quality Assurance, Health Care , Canada , Humans , Program Development
16.
BMC Palliat Care ; 16(1): 56, 2017 Nov 22.
Article in English | MEDLINE | ID: mdl-29166904

ABSTRACT

BACKGROUND: Although advance care planning (ACP) is fairly well understood, significant barriers to patient participation remain. As a result, tools to assess patient behaviour are required. The objective of this study was to improve the measurement of patient engagement in ACP by detecting existing survey design issues and establishing content and response process validity for a new survey entitled Behaviours in Advance Care Planning and ACtions Survey (BACPACS). METHODS: We based our new tool on that of an existing ACP engagement survey. Initial item reduction was carried out using behavior change theories by content and design experts to help reduce response burden and clarify questions. Thirty-two patients with chronic diseases (cancer, heart failure or renal failure) were recruited for the think aloud cognitive interviewing with the new, shortened survey evaluating patient engagement with ACP. Of these, n = 27 had data eligible for analysis (n = 8 in round 1 and n = 19 in rounds 2 and 3). Interviews were audio-recorded and analyzed using the constant comparison method. Three reviewers independently listened to the interviews, summarized findings and discussed discrepancies until consensus was achieved. RESULTS: Item reduction from key content expert review and conversation analysis helped decrease number of items from 116 in the original ACP Engagement Survey to 24-38 in the new BACPACS depending on branching of responses. For the think aloud study, three rounds of interviews were needed until saturation for patient clarity was achieved. The understanding of ACP as a construct, survey response options, instructions and terminology pertaining to patient engagement in ACP warranted further clarification. CONCLUSIONS: Conversation analysis, content expert review and think aloud cognitive interviewing were useful in refining the new survey instrument entitled BACPACS. We found evidence for both content and response process validity for this new tool.


Subject(s)
Advance Care Planning , Psychometrics/standards , Aged , Alberta , Chronic Disease/nursing , Female , Humans , Male , Middle Aged , Psychometrics/instrumentation , Psychometrics/methods , Reproducibility of Results , Surveys and Questionnaires
17.
BMC Palliat Care ; 17(1): 2, 2017 Jul 03.
Article in English | MEDLINE | ID: mdl-28673300

ABSTRACT

BACKGROUND: A compassionate community approach to palliative care provides important rationale for building community-based hospice volunteer capacity. In this project, we piloted one such capacity-building model in which volunteers and a nurse partnered to provide navigation support beginning in the early palliative phase for adults living in community. The goal was to improve quality of life by developing independence, engagement, and community connections. METHODS: Volunteers received navigation training through a three-day workshop and then conducted in-home visits with clients living with advanced chronic illness over one year. A nurse navigator provided education and mentorship. Mixed method evaluation data was collected from clients, volunteer navigators, the nurse navigator, and other stakeholders. RESULTS: Seven volunteers were partnered with 18 clients. Over the one-year pilot, the volunteer navigators conducted visits in home or by phone every two to three weeks. Volunteers were skilled and resourceful in building connections and facilitating engagement. Although it took time to learn the navigator role, volunteers felt well-prepared and found the role satisfying and meaningful. Clients and family rated the service as highly important to their care because of how the volunteer helped to make the difficult experiences of aging and advanced chronic illness more livable. Significant benefits cited by clients were making good decisions for both now and in the future; having a surrogate social safety net; supporting engagement with life; and ultimately, transforming the experience of living with illness. Overall the program was perceived to be well-designed by stakeholders and meeting an important need in the community. Sustainability, however, was a concern expressed by both clients and volunteers. CONCLUSIONS: Volunteers providing supportive navigation services during the early phase of palliative care is a feasible way to foster a compassionate community approach to care for an aging population. The program is now being implemented by hospice societies in diverse communities across Canada.


Subject(s)
Empathy , Palliative Care , Patient Navigation/methods , Volunteers/psychology , Aged , Canada , Female , Humans , Male , Middle Aged , Palliative Care/methods , Patient Navigation/standards , Pilot Projects , Workforce
18.
J Pain Symptom Manage ; 53(4): 669-681.e8, 2017 04.
Article in English | MEDLINE | ID: mdl-28042072

ABSTRACT

CONTEXT: A validated 82-item Advance Care Planning (ACP) Engagement Survey measures a broad range of behaviors. However, concise surveys are needed. OBJECTIVES: The objective of this study was to validate shorter versions of the survey. METHODS: The survey included 57 process (e.g., readiness) and 25 action items (e.g., discussions). For item reduction, we systematically eliminated questions based on face validity, item nonresponse, redundancy, ceiling effects, and factor analysis. We assessed internal consistency (Cronbach's alpha) and construct validity with cross-sectional correlations and the ability of the progressively shorter survey versions to detect change one week after exposure to an ACP intervention (Pearson correlation coefficients). RESULTS: Five hundred one participants (four Canadian and three US sites) were included in item reduction (mean age 69 years [±10], 41% nonwhite). Because of high correlations between readiness and action items, all action items were removed. Because of high correlations and ceiling effects, two process items were removed. Successive factor analysis then created 55-, 34-, 15-, nine-, and four-item versions; 664 participants (from three US ACP clinical trials) were included in validity analysis (age 65 years [±8], 72% nonwhite, 34% Spanish speaking). Cronbach's alphas were high for all versions (four items 0.84-55 items 0.97). Compared with the original survey, cross-sectional correlations were high (four items 0.85; 55 items 0.97) as were delta correlations (four items 0.68; 55 items 0.93). CONCLUSION: Shorter versions of the ACP Engagement Survey are valid, internally consistent, and able to detect change across a broad range of ACP behaviors for English and Spanish speakers. Shorter ACP surveys can efficiently measure broad ACP behaviors in research and clinical settings.


Subject(s)
Advance Care Planning , Surveys and Questionnaires , Aged , Canada , Cross-Sectional Studies , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Patient Participation , Psychometrics , Reproducibility of Results , United States
19.
J Pain Symptom Manage ; 53(1): 109-115, 2017 01.
Article in English | MEDLINE | ID: mdl-27838195

ABSTRACT

CONTEXT: Current health care delivery models have increased the need for safe and concise patient handover. Handover interventions in the literature have focused on the use of structured tools but have not evaluated their ability to facilitate retention of patient information. OBJECTIVES: In this study, mock pictorial displays were generated in an attempt to create a snapshot of each patient's medical and social circumstances. These pictorial displays contained the patient's photograph and other disease- and treatment-related images. The objective of this randomized trial was to assess the ability of these snapshots to enhance delayed information recall by care providers. METHODS: Participating physicians were given four advanced cancer patient histories to review, two at a time over two weeks. Pictorial image displays, referred to as the Electronic Whiteboard (EWB) were added, in a randomized manner to half of the textual histories. The impact of the EWB on information recall was tested in immediate and delayed time frames. RESULTS: Overall, patient information recall declined significantly over time, with or without the EWB. Still, this trial demonstrates significantly higher test scores after 24 hours with the addition of pictures to textual patient information, compared with textual information alone (P = 0.0002). A more modest improvement was seen with the addition of the EWB for questionnaires administered immediately after history review (P = 0.008). Most participants agreed that the EWB was a useful enhancement and that seeing a patient's photograph improved their ability to retain information. CONCLUSION: Most studies examining the institution of handover protocols in the health care setting have failed to harness the power of pictures and other representative images. This study demonstrates the ability of pictorial displays to improve both immediate and delayed recall of patient histories without increasing review time. These types of displays may be amenable to generation by software programs and have the potential to enhance information transfer in various settings.


Subject(s)
Continuity of Patient Care , Mental Recall , Photic Stimulation/methods , Physicians , Humans , Surveys and Questionnaires
20.
Healthc Policy ; 12(2): 12-18, 2016 11.
Article in English | MEDLINE | ID: mdl-28032821

ABSTRACT

Health organizations in canada have invested considerable resources in strategies to improve knowledge and uptake of advance care planning (acp). Yet barriers persist and many canadians do not engage in the full range of acp behaviours, including writing an advance directive and appointing a legally authorized decision-maker. not engaging effectively in acp disadvantages patients, their loved ones and their healthcare providers. This article advocates for greater collaboration between health and legal professionals to better support clients in acp and presents a framework for action to build connections between these typically siloed professions.


Subject(s)
Advance Care Planning/legislation & jurisprudence , Advance Care Planning/organization & administration , Interprofessional Relations , Lawyers , Physicians , Adult , Aged , Aged, 80 and over , Canada , Female , Humans , Male , Middle Aged , Surveys and Questionnaires
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