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BACKGROUND: Advance care planning (ACP) conversations are associated with improved end-of-life healthcare outcomes and patients want to engage in ACP with their healthcare providers. Despite this, ACP conversations rarely occur in primary care settings. The objective of this study was to implement ACP through adapted Serious Illness Care Program (SICP) training sessions, and to understand primary care provider (PCP) perceptions of implementing ACP into practice. METHODS: We conducted a quality improvement project guided by the Normalization Process Theory (NPT), in an interprofessional academic family medicine group in Hamilton, Ontario, Canada. NPT is an explanatory model that delineates the processes by which organizations implement and integrate new work. PCPs (physicians, family medicine residents, and allied health care providers), completed pre- and post-SICP self-assessments evaluating training effectiveness, a survey evaluating program implementability and sustainability, and semi-structured qualitative interviews to elaborate on barriers, facilitators, and suggestions for successful implementation. Descriptive statistics and pre-post differences (Wilcoxon Sign-Rank test) were used to analyze surveys and thematic analysis was used to analyze qualitative interviews. RESULTS: 30 PCPs participated in SICP training and completed self-assessments, 14 completed NoMAD surveys, and 7 were interviewed. There were reported improvements in ACP confidence and skills. NoMAD surveys reported mixed opinions towards ACP implementation, specifically concerning colleagues' abilities to conduct ACP and patients' abilities to participate in ACP. Physicians discussed busy clinical schedules, lack of patient preparedness, and continued discomfort or lack of confidence in having ACP conversations. Allied health professionals discussed difficulty sharing patient prognosis and identification of appropriate patients as barriers. CONCLUSIONS: Training in ACP conversations improved PCPs' individual perceived abilities, but discomfort and other barriers were identified. Future iterations will require a more systematic process to support the implementation of ACP into regular practice, in addition to addressing knowledge and skill gaps.
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Planificación Anticipada de Atención , Mejoramiento de la Calidad , Cuidados Críticos , Enfermedad Crítica , Humanos , Ontario , Atención Primaria de SaludRESUMEN
This paper reports findings from a modified World Café conducted at a palliative care professional conference in 2019, where input on tools to support advance care planning (ACP) was solicited from healthcare practitioners, managers and family members of patients. Barriers to ACP tool use included insufficient structures and resources in healthcare, death-avoidance culture and inadequate patient and family member engagement. Recommendations for tool use included clarification of roles and processes, training, mandates and monitoring, leadership support, greater reflection of diversity in tools and methods for public engagement. This paper illuminates factors to consider when implementing ACP tools in healthcare.
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Planificación Anticipada de Atención , Conocimientos, Actitudes y Práctica en Salud , Actitud del Personal de Salud , Canadá , Asistencia Sanitaria Culturalmente Competente , Familia , Humanos , Grupos Minoritarios , Participación del Paciente , Minorías Sexuales y de GéneroRESUMEN
PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.
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Planificación Anticipada de Atención , Toma de Decisiones , Internet , Participación del Paciente/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Canadá , Estudios Controlados Antes y Después , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Pacientes Ambulatorios , Atención Primaria de Salud , Estudios Prospectivos , Encuestas y CuestionariosRESUMEN
BACKGROUND: People who engage in advance care planning (ACP) are more likely to receive health care that is concordant with their goals at the end of life. Little discussion of ACP occurs in primary care. OBJECTIVE: The objective of this study was to describe primary care clinicians' perspectives on having ACP conversations with their patients. METHODS: We conducted a survey of family physicians and non-physician clinicians in primary care in 2014-2015. We compared family physicians and non-physician clinicians on willingness, confidence, participation and acceptability for other clinicians to engage in six aspects of ACP (initiating, exchanging information, decision coaching, finalizing plans, helping communicate plans with family members and other health professionals) on scales from 0 = not at all/extremely unacceptable to 6 = very/all the time/extremely acceptable. RESULTS: The response rate was 72% (n = 117) among family physicians and 69% (n = 64) among non-physician clinicians. Mean ratings (standard deviation [SD]) of willingness were high (4.5 [1.4] to 5.0 [1.2] for physicians; 3.4 [1.8] to 4.6 [1.6] non-physician clinicians). There was little participation (mean ratings 2.4 [1.7] to 2.7 [1.6] for physicians, 1.0 [1.5] to 1.4 [1.7] for non-physician clinicians). Non-physician clinicians rated confidence statistically significantly lower than physicians for all ACP aspects. Acceptability for non-physician clinician involvement was high in both groups (mean acceptability ratings greater than 4). CONCLUSION: Current engagement of primary care clinicians in ACP is low. Given the high willingness and acceptability for non-physician clinician involvement, increasing the capacity of non-physician clinicians could enable uptake of ACP in primary care.
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Planificación Anticipada de Atención/organización & administración , Actitud del Personal de Salud , Comunicación , Médicos de Atención Primaria , Adulto , Canadá , Familia , Femenino , Humanos , Masculino , Persona de Mediana Edad , Relaciones Médico-Paciente , Atención Primaria de Salud , Encuestas y CuestionariosRESUMEN
BACKGROUND: The COVID-19 pandemic is a significant public health emergency that impacts all sectors of healthcare. The negative health outcomes for the COVID-19 infection have been most severe in the frail elderly dwelling in Canadian long-term care (LTC) homes. METHODS: An online cross-sectional survey of Ontario LTC Clinicians working in LTC homes in Ontario Canada was conducted to provide the clinician perspective on the preparedness and engagement of the LTC sector during the COVID-19 pandemic. The survey questionnaire was developed in collaboration with the Ontario Long-Term Care Clinicians organization (OLTCC) and was distributed between March 30, 2020 to May 25, 2020. All registered members of the OLTCC and Nurse-led LTC Outreach Teams were invited to participate. The primary outcomes were: 1) the descriptive report of the screening measures implemented, communication and information received, and the preparation of the respondent's LTC home to a potential COVID-19 outbreak; and 2) the level of agreement, as reported using a five-point Likert scale), to COVID-19 preparedness statements for the respondent's LTC home was also assessed. RESULTS: The overall response rate was 54% (160/294). LTC homes implemented a wide range of important interventions (e.g. instituting established respiratory isolation protocols, active screening of new LTC admissions, increasing education on infection control processes, encouraging sick staff to take time off, etc). Ample communications pertinent to the pandemic were received from provincial LTC organizations, the government and public health officials. However, the feasibility of implementing public health recommendations, as well as the engagement of the LTC sector in pandemic planning were identified as areas of concern. Medical director status was associated with an increased knowledge of local implementation of interventions to mitigate COVID-19, as well as endorsing increased access to reliable COVID-19 information and resources to manage a potential COVID-19 outbreak in their LTC home. CONCLUSIONS: This study highlights the communication and implementation of recommendations in the Ontario LTC sector, despite some concerns regarding feasibility. Importantly, LTC clinician respondents clearly indicated that better engagement with LTC leaders is needed to plan a coordinated pandemic response.
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Infecciones por Coronavirus/prevención & control , Personal de Salud/psicología , Casas de Salud/organización & administración , Pandemias/prevención & control , Neumonía Viral/prevención & control , Adulto , Anciano , COVID-19 , Infecciones por Coronavirus/epidemiología , Estudios Transversales , Femenino , Encuestas de Atención de la Salud , Personal de Salud/estadística & datos numéricos , Humanos , Cuidados a Largo Plazo/organización & administración , Masculino , Persona de Mediana Edad , Ontario/epidemiología , Neumonía Viral/epidemiología , Adulto JovenRESUMEN
BACKGROUND: Although patient-centred care has become increasingly important across all medical specialties, when it comes to end of life care, research has shown that treatments ordered are not often concordant with people's expressed preferences. Patient and family engagement in Advance Care Planning (ACP) in the primary care setting could improve the concordance between patients' wishes and the healthcare received when patients cannot speak for themselves. The aim of this study was to better understand the barriers faced by older patients regarding talking to their family members and family physicians about ACP. METHODS: In this multi-site cross-sectional study, three free text questions regarding reasons patients found it difficult to discuss ACP with their families or their family physicians were part of a self-administered questionnaire about patients' knowledge of and engagement in ACP. The questionnaire, which included closed ended questions followed by three probing open ended questions, was distributed in 20 family practices across 3 provinces in Canada. The free text responses were analyzed using thematic analysis and form the basis of this paper. RESULTS: One hundred two participants provided an analyzable response to the survey when asked why they haven't talked to someone about ACP. Two hundred fifty-four answered the question about talking to their physician and 340 answered the question about talking to family members. Eight distinct themes emerged from the free text response analysis: 1. They were too young for ACP; 2. The topic is too emotional; 3. The Medical Doctor (MD) should be responsible for bringing up ACP 4. A fear of negatively impacting the patient-physician relationship; 5. Not enough time in appointments; 6. Concern about family dynamics; 7. It's not a priority; and 8. A lack of knowledge about ACP. CONCLUSIONS: Patients in our sample described many barriers to ACP discussions, including concerns about the effect these discussions may have on relationships with both family members and family physicians, and issues relating to patients' knowledge and interpretation of the importance, responsibility for, or relevance of ACP itself. Family physicians may be uniquely placed to leverage the longitudinal, person- centred relationship they have with patients to mitigate some of these barriers.
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Planificación Anticipada de Atención/organización & administración , Barreras de Comunicación , Medicina Familiar y Comunitaria/métodos , Prioridad del Paciente , Relaciones Médico-Paciente/ética , Cuidado Terminal , Adulto , Anciano , Canadá/epidemiología , Estudios Transversales , Familia/psicología , Femenino , Humanos , Masculino , Medición de Resultados Informados por el Paciente , Investigación Cualitativa , Cuidado Terminal/ética , Cuidado Terminal/métodos , Cuidado Terminal/psicologíaRESUMEN
OBJECTIVE: To identify barriers to and enablers of advance care planning (ACP) perceived by physicians and other health professionals in primary care. DESIGN: Cross-sectional, self-administered survey. SETTING: Ontario, Alberta, and British Columbia. PARTICIPANTS: Family physicians (n = 117) and other health professionals (n = 64) in primary care. MAIN OUTCOME MEASURES: Perceived barriers relating to the clinician, characteristics of patients, and system factors, rated on a 7-point scale from 0 (not at all) to 6 (an extreme amount), and enablers reported using an open-ended question. RESULTS: Between November 2014 and June 2015, questionnaires were returned by 72.2% (117 of 162) of family physicians and 68.8% (64 of 93) of the other health professionals. Physicians rated insufficient time, inability to electronically transfer the advance care plan across care settings, decreased interaction with patients near the end of life owing to transfer of care, and patients' difficulty understanding limitations and complications of treatment options as the highest barriers. Other health professionals additionally identified their own lack of knowledge and difficulty accessing the physician as barriers. Themes identified as enablers included greater public engagement, clinician attitudes, creating capacity for clinicians, integrating ACP into practice, and system and policy supports. CONCLUSION: In primary care, there are barriers to engaging patients in ACP at the patient, provider, and system levels that could potentially be addressed through the informed development of multifaceted interventions.
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Planificación Anticipada de Atención , Barreras de Comunicación , Conocimientos, Actitudes y Práctica en Salud , Adulto , Canadá , Estudios Transversales , Femenino , Personal de Salud/psicología , Humanos , Masculino , Persona de Mediana Edad , Médicos de Familia/psicología , Atención Primaria de Salud , Encuestas y CuestionariosRESUMEN
Infant feeding raises unique concerns for mothers living with HIV in Canada, where they are recommended to avoid breastfeeding yet live in a social context of "breast is best." In narrative interviews with HIV-positive mothers from Ontario, Canada, a range of feelings regarding not breastfeeding was expressed, balancing feelings of loss and self-blame with the view of responsibility and "good mothering" under the current Canadian guidelines. Acknowledging responsibility to put their child's health first, participants revealed that their choices were influenced by variations in social and cultural norms, messaging, and guidelines regarding breastfeeding across geographical contexts. This qualitative study raises key questions about the impact of breastfeeding messaging and guidelines for HIV-positive women in Canada.
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Lactancia Materna , Infecciones por VIH/prevención & control , Conocimientos, Actitudes y Práctica en Salud , Transmisión Vertical de Enfermedad Infecciosa/prevención & control , Madres/psicología , Adulto , Canadá , Conducta de Elección , Femenino , Infecciones por VIH/transmisión , Humanos , Lactante , Entrevistas como Asunto , Narración , Ontario , Embarazo , Complicaciones Infecciosas del Embarazo/psicología , Investigación Cualitativa , Estigma SocialRESUMEN
BACKGROUND: Advance care planning (ACP) is a process which enables patients to communicate wishes, values, fears, and preferences for future medical care. Despite patient interest in ACP, the frequency of discussions remains low. Barriers to ACP may be mitigated by involving non-physician clinic staff, preparing patients ahead of visits, and using tools to structure visits. An ACP care pathway incorporating these principles was implemented in longitudinal generalist outpatient care, including primary care/family medicine and general internal medicine, in two Canadian provinces. This study aims to understand clinician experiences implementing the pathway. METHODS: The pathway was implemented in one family practice in Alberta, two family practices in British Columbia (BC), and one BC internal medicine outpatient clinic. Physicians and allied health professionals delivered structured pathway visits based on the Serious Illness Conversation Guide. Twelve physicians and one social worker participated in interviews or focus groups at the end of the study period. Qualitative data were coded inductively using an iterative approach, with regular meetings between coders. RESULTS: Clinicians described experiences with the ACP care pathway, impact at the clinician level, and impact at the patient level. Within each domain, clinicians described barriers and facilitators experienced during implementation. Clinicians also reflected candidly about potential for future implementation and the sustainability of the pathway. CONCLUSIONS: While the pathway was implemented slightly differently between provinces, core experiences were that implementation of the pathway, and integration with current practice, were feasible. Across settings, similar themes recurred regarding usefulness of the pathway structure and its tools, impact on clinician confidence and interactions with patients, teamwork and task delegation, compatibility with existing workflow, and patient preparation and readiness. Clinicians were supportive of ACP and of the pathway. TRIAL REGISTRATION: The study was prospectively registered with clinicaltrials.gov (NCT03508557). Registered April 25, 2018. https://classic. CLINICALTRIALS: gov/ct2/show/NCT03508557 .
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Planificación Anticipada de Atención , Investigación Cualitativa , Humanos , Colombia Británica , Alberta , Masculino , Femenino , Actitud del Personal de Salud , Grupos Focales , Medicina Familiar y Comunitaria/organización & administración , Persona de Mediana Edad , Adulto , Vías Clínicas/organización & administraciónRESUMEN
OBJECTIVES: The PoET (Prevention of Error-based Transfers) project seeks to align long-term care (LTC) home informed consent practices to existing legislation, thereby reducing consent-related error-based transfers to acute care. We sought to measure changes in resident-level palliative care provision after participating in the PoET Southwest Spread Project (PSSP), and to identify patient and LTC home characteristics associated with palliative care provision. DESIGN: Quasi-experimental matched (1:1 ratio) cohort study design using linked population-based health administrative data. SETTING: Sixty LTC homes (PSSP = 30; Control = 30) in Ontario, Canada, from November 2019 to December 2021. METHODS: We matched 30 PSSP to 30 control homes and described incidence rates for resident-level palliative care provision (ie, physician palliative care encounters and palliative medication prescriptions) during the 7-month postimplementation period. We used generalized linear mixed models to evaluate the association between PSSP implementation and palliative care provision during the postimplementation period. We adjusted for resident-level characteristics (ie, age, sex, comorbidity status) and home-level characteristics (ie, rurality status, profit model, COVID-19 impact). We identified a decedent subcohort to measure palliative care provision patterns during the last 2 months of life. RESULTS: We captured a matched cohort of 8894 residents (PSSP = 4103; Control = 4791). Incidence rates of palliative care encounters increased during the postimplementation period for PSSP (82.6 to 85.4 per 100 person-months) but not for control residents (68.8 to 65.3 per 100 person-months). After adjusting for key covariates, PSSP exposure was associated increased palliative care provision (incidence rate ratio 2.47, 95% CI 2.31-2.64) and palliative care medication prescription (1.16, 95% CI 1.12-1.20). Larger home size, certain health regions, and higher number of comorbidities were associated with increased physician palliative care encounters. CONCLUSIONS AND IMPLICATIONS: By promoting correct informed consent practices in LTC, PSSP participation increased palliative care provision for PSSP LTC residents across all settings.
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Cuidados Paliativos , Humanos , Ontario , Femenino , Masculino , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , COVID-19/prevención & control , COVID-19/epidemiología , Cuidados a Largo Plazo , Casas de Salud , Transferencia de Pacientes/estadística & datos numéricosRESUMEN
OBJECTIVES: To measure changes in resident-level acute care transfer rates after the PoET Southwest Spread Project (PSSP), and to identify patient and long-term care (LTC) home characteristics associated with acute care transfers after program launch. DESIGN: Quasi-experimental matched (1:1 ratio) cohort study design using linked population-based health administrative data. SETTING: Sixty publicly funded LTC homes (PSSP = 30; control = 30) in Ontario, Canada, from November 2019 to December 2021. METHODS: We matched 30 PSSP homes to 30 control homes with similar characteristics and described incidence rates for resident-level acute care transfers during the 7-month post-implementation period. We used generalized linear mixed models to evaluate the association between PSSP implementation and acute care transfers during the post-implementation period. We adjusted resident-level characteristics (ie, age, sex, comorbidity status) and home-level characteristics (ie, rurality status, profit model, COVID-19 impact). We identified a decedent sub-cohort to measure transfer patterns during the last 2 months of life. RESULTS: A matched cohort of 8894 residents (PSSP = 4103; control = 4791) was captured. Incidence rates of transfers increased during the post-implementation period for both PSSP (78.8 to 80.9 transfers per 1000 person-months) and control residents (66.9 to 67.9 transfers per 1000 person-months). After adjusting for covariates of interest, PSSP exposure was associated with a reduction in acute care transfers during the post-implementation period after adjusting for covariates (incidence rate ratio, 0.73; 95% CI, 0.62-0.87; P = .0002). Older age and select health regions were associated with reduced transfers, whereas higher comorbidity status and higher COVID-19 outbreak days were associated with increases. Similar patterns persisted for transfers during the last 2 months of life. CONCLUSIONS AND IMPLICATIONS: This study systematically evaluated the impact of an ethics-based health care intervention in LTC using health care utilization databases. PoET implementation is associated with reduced acute care transfer rates, especially in the last 2 months of life in LTC.
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COVID-19 , Cuidados a Largo Plazo , Humanos , Casas de Salud , Estudios de Cohortes , Datos de Salud Recolectados Rutinariamente , COVID-19/epidemiología , Ontario/epidemiologíaRESUMEN
OBJECTIVE: To evaluate the feasibility and efficacy of a serious illness decision aid (Plan Well Guide) in increasing the engagement of substitute decision-makers (SDM) in advance care planning (ACP). METHODS: This trial was conducted (2017-2019) in outpatient settings in Ontario, Canada, aiming to recruit 90 dyads of patients aged 65 years and older at high risk of needing future medical decisions and their SDM. Participants were randomised to receive the intervention immediately or to a 3-month wait period. The Plan Well Guide was administered to the patient and SDM by a facilitator. Outcomes were change on the validated 17-item SDM ACP Engagement Survey (primary) and 15-item patient ACP Engagement Survey (secondary). RESULTS: Of 136 dyads approached, 58 consented and were randomised and 45 completed the study (28 immediate intervention, 17 delayed intervention). The trial was stopped early because of difficulties with enrolling and following up participants. The mean changes on the SDM ACP Engagement Survey and the patient ACP Engagement Survey favoured the first group but were not statistically significant (mean difference (MD)=+0.2 (95% CI: -0.3 to 0.6) and MD=+0.4 (95% CI: -0.1 to 0.8), respectively). In a post-hoc subgroup analysis, significant treatment effects were seen in SDMs with a lower-than-median baseline score compared with those at or above the median. CONCLUSIONS: In this statistically underpowered randomised trial, differences in SDM ACP engagement between groups were small. Further information is needed to overcome recruitment challenges and to identify people most likely to benefit from the Plan Well Guide.Trial registration number NCT03239639.
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Planificación Anticipada de Atención , Anciano , Toma de Decisiones , Técnicas de Apoyo para la Decisión , Humanos , Ontario , Participación del PacienteRESUMEN
BACKGROUND: The purpose of this study was to examine the relationship between the Medical Outcomes Study-HIV Health Survey (MOS-HIV) and the SF-12v2 to determine if the latter is adequate to assess the health-related quality of life (HRQoL) of men and women living with HIV/AIDS. 112 men and women living with HIV/AIDS who access care at a tertiary HIV clinic in Hamilton, Ontario were included in this cross-sectional analysis. Correlation coefficients of the MOS-HIV physical and mental health summary scores (PHS and MHS) and the SF-12v2 physical and mental component summary scales (PCS and MCS) were calculated along with common sub-domains of the measures including physical functioning (PF), bodily pain (BP), general health perceptions (GH), vitality (VT), social functioning (SF) and mental health (MH) to explore the relationship between these two HRQoL measures. The sub-domains role physical (RP) and role emotional (RE) of the SF-12v2 were compared separately to the sub-domain role functioning (RF) of the MOS-HIV. Weighted kappa scores were calculated to determine agreement beyond chance between the MOS-HIV and SF-12v2 in assigning a HRQoL state (i.e. low, moderate, good, very good). RESULTS: The MOS-HIV had mean PHS and MHS summary scores of 47.3 (SD = 11.5) and 49.2 (SD = 10.7) respectively. The mean SF-12v2 PCS and MCS scores were 47.7 (SD = 11.0) and 44.0 (SD = 10.4). The MOS-HIV and SF-12v2 physical and mental health summary scores were positively correlated (r = 0.84, p < 0.001 and r = 0.76, p < 0.001). All common sub-domains were significantly correlated at p values from < 0.001 to 0.034. Substantial agreement was observed in assigning a HRQoL state (Physical: κ = 0.788, SE = 0.095; Mental: κ = 0.707, SE = 0.095). CONCLUSIONS: This analysis validates the SF-12v2 for measuring HRQoL in adult men and women living with HIV/AIDS.
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BACKGROUND: Tools for advance care planning (ACP) are advocated to help ensure patient values guide healthcare decisions. Evaluation of the effect of tools introduced to patients in clinical settings is needed. OBJECTIVE: To evaluate the effect of the Canadian Speak Up Campaign tools on engagement in advance care planning (ACP), with patients attending outpatient clinics. Patient involvement: Patients were not involved in the problem definition or solution selection in this study but members of the public were involved in development of tools. The measurement of impacts involved patients. METHODS: This was a prospective pre-post study in 15 primary care and two outpatient cancer clinics. The outcome was scores on an Advance Care Planning Engagement Survey measuring Behavior Change Process on 5-point scales and Actions (0-21-point scale) administered before and six weeks after using a tool, with reminders at two or four weeks. RESULTS: 177 of 220 patients (81%) completed the study (mean 68 years of age, 16% had cancer). Mean Behavior Change Process scores were 2.9 at baseline and 3.5 at follow-up (mean change 0.6, 95% confidence interval 0.5 to 0.7; large effect size of 0.8). Mean Action Measure score was 3.7 at baseline and 4.8 at follow-up (mean change 1.1, 95% confidence interval 0.6-1.5; small effect size of 0.2). PRACTICAL VALUE: Publicly available ACP tools may have utility in clinical settings to initiate ACP among patients. More time and motivation may be required to stimulate changes in patient behaviors related to ACP.
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Planificación Anticipada de Atención , Pacientes Ambulatorios , Adolescente , Canadá , Estudios Controlados Antes y Después , Humanos , Estudios ProspectivosRESUMEN
BACKGROUND: The impact of prior advance care planning (ACP) documentation on substitute decision-makers' (SDMs) knowledge of values for end-of-life (EOL) care, and its correlation with SDM satisfaction with EOL care provision, have not been assessed in long-term care (LTC). METHODS: A cross-sectional survey of 2,595 SDMs from 27 LTC homes assessed: 1) knowledge of pre-existing ACP documentation and values for EOL care, and 2) the importance and satisfaction of EOL care provision in LTC. Knowledge of values for EOL care was compared to administrative documentation. Importance and satisfaction were plotted on a performance-importance grid. Multiple linear regression assessed whether knowledge of pre-existing ACP documentation correlated with satisfaction. RESULTS: The response rate was 25% (658/2,595); 69% of LTC residents had pre-existing ACP documentation. Discordance was noted between SDMs' knowledge of values for EOL care and administrative documentation. Pre-existing knowledge of ACP documentation was not correlated with EOL care provision satisfaction. Priority areas for increasing satisfaction include illness management, SDM communication, and relationships with LTC clinicians. CONCLUSIONS: The discordance between SDMs' knowledge of values for EOL care and formal documentation needs to be addressed. Although pre-existing ACP documentation does not impact satisfaction, EOL care provision could be improved by targeting illness management, SDM communication, and relationships with LTC clinicians.
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OBJECTIVES: Long-term care (LTC) is an important setting for goals of care (GoC) discussions. Understanding clinician barriers to GoC discussions could identify opportunities for LTC-specific interventions to improve quantity and quality of GoC discussions in the context of serious illness. DESIGN: A multicenter, cross-sectional survey study. SETTING AND PARTICIPANTS: 1184 LTC clinicians from 34 Ontario LTC homes were invited to participate. MEASURES: The questionnaire assessed (1) clinician barriers related to the LTC resident power of attorney (POA), the health care provider, and the health care system; (2) willingness to engage in GoC discussions; and (3) suggestions to address identified barriers. Responses were rated on a 7-point scale (1 = extremely unimportant/unwilling, 7 = extremely important/willing). A linear mixed-effects model determined significance between mean importance ratings for each barrier and the willingness to engage in GoC discussion between physicians and nurses. A simple content analysis was performed on written suggestions to address GoC discussion barriers. RESULTS: The overall response rate was 49% (581/1184). The top 3 rated barriers were (1) POA's difficulty accepting their loved one's poor prognosis, (2) POA's difficulty understanding the limitations and complications of life-sustaining therapies, and (3) lack of adequate documentation of prior discussions with LTC resident or POA. Barriers related to the health care provider, and the health care system, were deemed statistically more important by nurses. LTC physicians were more willing to exchange information, be a decision coach, and participate in the final decision than nurses. Suggestions to improve GoC discussions include a dedicated team to have these conversations in LTC, and updating policies to mandate and standardize these conversations at all family meetings. CONCLUSIONS AND IMPLICATIONS: This study has identified key LTC clinician-identified barriers to GoC discussions. Developing targeted interventions to these barriers could be the foundation for developing new interventions that support high-quality GoC discussions.
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Cuidados a Largo Plazo , Planificación de Atención al Paciente , Comunicación , Estudios Transversales , Humanos , OntarioRESUMEN
BACKGROUND: Non-invasive surrogate measures which are valid and responsive to change are needed to study cardiovascular risks in HIV. We compared the construct validity of two noninvasive arterial measures: carotid intima medial thickness (IMT), which measures anatomic disease; and brachial flow-mediated vasodilation (FMD), a measure of endothelial dysfunction. METHODS: A sample of 257 subjects aged 35 years or older, attending clinics in five Canadian centres, were prospectively recruited into a study of cardiovascular risk among HIV subjects. The relationship between baseline IMT or FMD and traditional vascular risk factors was studied using regression analysis. We analyzed the relationship between progression of IMT or FMD and risk factors using fixed-effects models. We adjusted for use of statin medication and CD4 count in both models. RESULTS: Baseline IMT was significantly associated with age (p < 0.001), male gender (p = 0.034), current smoking status (p < 0.001), systolic blood pressure (p < 0.001) and total:HDL cholesterol ratio (p = 0.004), but not statin use (p = 0.904) and CD4 count (p = 0.929). IMT progression was significantly associated with age (p < 0.001), male gender (p = 0.0051) and current smoking status (p = 0.011), but not statin use (p = 0.289) and CD4 count (p = 0.927). FMD progression was significantly associated with current statin use (p = 0.019), but not CD4 count (p = 0.84). Neither extent nor progression of FMD was significantly associated with any of the examined vascular risk factors. CONCLUSION: IMT correlates better than FMD with established cardiovascular risk factors in this cohort of HIV patients. Standardization of protocols for FMD and IMT will facilitate the comparison of results across studies.
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OBJECTIVE: The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future. METHODS AND ANALYSIS: This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported. ETHICS AND DISSEMINATION: Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to disseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms. TRIAL REGISTRATION NUMBER: NCT03239639; Pre-results.
Asunto(s)
Planificación Anticipada de Atención/organización & administración , Sistemas de Apoyo a Decisiones Clínicas , Apoderado , Anciano , Femenino , Humanos , Masculino , Participación del Paciente , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
OBJECTIVES: To assess the feasibility, acceptability and clinical sensibility of a novel survey, the advance care planning (ACP) Engagement Survey, in various healthcare settings. SETTING: A target sample of 50 patients from each of primary care, hospital, cancer care and dialysis care settings. PARTICIPANTS: A convenience sample of patients without cognitive impairment who could speak and read English was recruited. Patients 50 and older were eligible in primary care; patients 80 and older or 55 and older with clinical markers of advanced chronic disease were recruited in hospital; patients aged 19 and older were recruited in cancer and renal dialysis centres. OUTCOMES: We assessed feasibility, acceptability and clinical sensibility of the ACP Engagement Survey using a 6-point scale. The ACP Engagement Survey measures ACP processes (knowledge, contemplation, self-efficacy and readiness) on 5-point Likert scales and actions (yes/no). RESULTS: 196 patients (38-96â years old, 50.5% women) participated. Mean (±SD) time to administer was 48.8±19.6â min. Mean acceptability scores ranged from 3.2±1.3 in hospital to 4.7±0.9 in primary care, and mean relevance ranged from 3.5±1.0 in hospital to 4.9±0.9 in dialysis centres (p<0.001 for both). The mean process score was 3.1±0.6 and the mean action score was 11.2±5.6 (of a possible 25). CONCLUSIONS: The ACP Engagement Survey demonstrated feasibility and acceptability in outpatient settings but was less feasible and acceptable among hospitalised patients due to length. A shorter version may improve feasibility. Engagement in ACP was low to moderate.
Asunto(s)
Planificación Anticipada de Atención , Toma de Decisiones , Conocimientos, Actitudes y Práctica en Salud , Aceptación de la Atención de Salud/estadística & datos numéricos , Participación del Paciente/estadística & datos numéricos , Adulto , Anciano , Anciano de 80 o más Años , Canadá , Enfermedad Crónica/terapia , Estudios Transversales , Estudios de Factibilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
INTRODUCTION: The increased incidence of human immunodeficiency virus (HIV) in women, particularly marginalized women, prompted research to examine women's health service experiences at a local outpatient clinic. METHODS: A qualitative case study using semistructured interviews examined facilitators and barriers to health care services. Seventeen women living with HIV who accessed care at an outpatient HIV clinic in central west Ontario were interviewed. Thematic analysis was used to code health care experiences perceived as HIV-related stigma. RESULTS: Women perceived HIV-related stigma when health care providers lacked basic HIV knowledge and failed to uphold the ethical principles of patient-provider relationships, resulting in women's disengagement from health care. CONCLUSIONS: We propose a community-based participatory research framework to reform health care educational curriculum toward a culture of health care safety that is inclusive of people living with HIV.