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1.
Curr Opin Pulm Med ; 30(4): 410-418, 2024 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-38533802

RESUMO

PURPOSE OF REVIEW: Palliative care (PC) in lung transplantation is increasingly acknowledged for its important role in addressing symptoms, enhancing functionality, and facilitating advance care planning for patients, families, and caregivers. The present review provides an update in PC management in lung transplantation. RECENT FINDINGS: Research confirms the effectiveness of PC for patients with advanced lung disease who are undergoing transplantation, showing improvements in symptoms and reduced healthcare utilization. Assessment tools and patient-reported outcome measures for PC are commonly used in lung transplant candidates, revealing discrepancies between symptom severity and objective measures such as exercise capacity. The use of opioids to manage dyspnea and cough in the pretransplant period is deemed safe and does not heighten risks posttransplantation. However, the integration of PC support in managing symptoms and chronic allograft dysfunction in the posttransplant period has not been as well described. SUMMARY: Palliative care support should be provided in the pretransplant and select peri-operative and posttransplant periods to help support patient quality of life, symptoms, communication and daily function.


Assuntos
Transplante de Pulmão , Cuidados Paliativos , Qualidade de Vida , Humanos , Cuidados Paliativos/métodos , Medidas de Resultados Relatados pelo Paciente , Dispneia/terapia , Dispneia/etiologia
2.
Palliat Med ; 36(6): 945-954, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35441551

RESUMO

BACKGROUND: Palliative care is well suited to support patients hospitalized with COVID-19, but integration into care has been variable and generally poor. AIM: To understand barriers and facilitators of palliative care integration for hospitalized patients with COVID-19. METHODS: Internists, Intensivists and palliative care physicians completed semi-structured interviews about their experiences providing care to patients with COVID-19. Results were analysed using thematic analysis. RESULTS: Twenty-three physicians (13 specialist palliative care, five intensivists, five general internists) were interviewed; mean ± SD age was 42 ± 11 years and 61% were female. Six thematic categories were described including: patient and family factors, palliative care knowledge, primary provider factors, COVID-19 specific factors, palliative care service factors, and leadership and culture factors. Patient and family factors included patient prognosis, characteristics that implied prognosis (i.e., age, etc.), and goals of care. Palliative care knowledge included confidence in primary palliative care skills, misperception that COVID-19 is not a 'palliative diagnosis', and the need to choose quantity or quality of life in COVID-19 management. Primary provider factors included available time, attitude, and reimbursement. COVID-19 specific factors were COVID-19 as an impetus to act, uncertain illness trajectory, treatments and outcomes, and infection control measures. Palliative care service factors were accessibility, adaptability, and previous successful relationships. Leadership and culture factors included government-mandated support, presence at COVID planning tables, and institutional and unit culture. CONCLUSION: The study findings highlight the need for leadership support for formal integrated models of palliative care for patients with COVID-19, a palliative care role in pandemic planning, and educational initiatives with primary palliative care providers.


Assuntos
COVID-19 , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Pesquisa Qualitativa , Qualidade de Vida
3.
Palliat Med ; 35(6): 1191-1201, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33855886

RESUMO

BACKGROUND: To date, little is known about the characteristics of patients who are admitted to a palliative care bed for end-of-life care. Previous data suggest that there are disparities in access to palliative care services based on age, sex, diagnosis, and socioeconomic status, but it is unclear whether these differences impact access to a palliative care bed. AIM: To better identify patient factors associated with the likelihood/rate of admission to a palliative care bed. DESIGN: A retrospective chart review of all initiated palliative care bed applications through an electronic referral program was conducted over a 24-month period. SETTING/PARTICIPANTS: Patients who apply and are admitted to a palliative care bed in a Canadian metropolitan city. RESULTS: A total of 2743 patients made a total of 5202 bed applications to 9 hospice/palliative care units in 2015-2016. Referred and admitted cancer patients were younger, male, and more functional than compared to non-cancer patients (all p < 0.001). Referred and admitted patients without cancer were more advanced in their illness trajectory, with an anticipated prognosis <1 month and Palliative Performance Status of 10%-20% (all p < 0.001). On multivariate analysis, a diagnosis of cancer and a prognosis of <3 months were associated with increased likelihood and/or rate of admission to a bed, whereas the presence of care needs, a longer prognosis and a PPS of 30%-40% were associated with decreased rates and/or likelihood of admission. CONCLUSION: Patients without cancer have reduced access to palliative care facilities at end-of-life compared to patients with cancer; at the time of their application and admission, they are "sicker" with very low performance status and poorer prognoses. Further studies investigating disease-specific clinical variables and support requirements may provide more insights into these observed disparities.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Canadá , Humanos , Masculino , Neoplasias/terapia , Cuidados Paliativos , Estudos Retrospectivos
4.
Palliat Med ; 35(8): 1590-1601, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34472398

RESUMO

BACKGROUND: Hospital-to-home transitions in palliative care are fraught with challenges. To assess transitions researchers have used patient reported outcome measures and qualitative data to give unique insights into a phenomenon. Few measures examine care setting transitions in palliative care, yet domains identified in other populations are likely relevant for patients receiving palliative care. AIM: Gain insight into how patients experience three domains, discharge readiness, transition quality, and discharge-coping, during hospital-to-home transitions. DESIGN: Longitudinal, convergent parallel mixed methods study design with two data collection visits: in-hospital before and 3-4 weeks after discharge. Participants completed scales assessing discharge readiness, transition quality, and post discharge-coping. A qualitative interview was conducted at both visits. Data were analyzed separately and integrated using a merged transformative methodology, allowing us to compare and contrast the data. SETTING AND PARTICIPANTS: Study was set in two tertiary hospitals in Toronto, Canada. Adult inpatients (n = 25) and their caregivers (n = 14) were eligible if they received a palliative care consultation and transitioned to home-based palliative care. RESULTS: Results were organized aligning with the scales; finding low discharge readiness (5.8; IQR: 1.9), moderate transition quality (66.7; IQR: 33.33), and poor discharge-coping (5.0; IQR: 2.6), respectively. Positive transitions involved feeling well supported, managing medications, feeling well, and having healthcare needs met. Challenges in transitions were feeling unwell, confusion over medications, unclear healthcare responsibilities, and emotional distress. CONCLUSIONS: We identified aspects of these three domains that may be targeted to improve transitions through intervention development. Identified discrepancies between the data types should be considered for future research exploration.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Adulto , Assistência ao Convalescente , Hospitais , Humanos , Alta do Paciente
5.
J Cancer Educ ; 36(5): 1030-1038, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-32140967

RESUMO

Effective communication between healthcare providers (HCPs) and patients is important for HCP well-being, patient engagement, and health outcomes. Yet, HCPs do not receive adequate communication skills training and report feeling unprepared for difficult conversations. A needs assessment of 64 cancer HCP trainees in Toronto, Canada, found that a majority of trainees rated themselves with low competency in communication skills to support patients through difficult conversations, while nearly all rated these skills as important to their practice. A blended multiprofessional communications program was developed including online theoretical learning and reflective practice in addition to in-person simulation with standardised patient actors. Since communication skills mastery is highly unlikely to occur at the termination of a single training program, the goal of the program was to stimulate participants' motivational beliefs about difficult conversations communication skills in order to deepen their commitment to learning and mastery. The motivational beliefs assessed included self-efficacy (self-perceived competence), intent to use techniques learned, and confidence in task mastery. After completing the course, participants' self-perceived competence in dealing with difficult conversations significantly increased by an average of 25 points (p < 0.001) on a rating scale of 1-100 (n = 40). Participants' intent to use techniques did not change significantly and remained high with an overall average of 89 points. After the course, participants rated their confidence in mastering techniques learned at an average score of 71 points. Multiprofessional, simulation-based training is an effective way to improve HCP trainees' motivational beliefs around having difficult conversations.


Assuntos
Comunicação , Pessoal de Saúde , Competência Clínica , Currículo , Pessoal de Saúde/educação , Humanos , Oncologia/educação
6.
Support Care Cancer ; 28(2): 877-885, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31165335

RESUMO

PURPOSE: To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty "supportive care." METHODS: The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. RESULTS: The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; > 90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (> 6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p = 0.02) and have a postgraduate degree (p = 0.02), and less likely to provide mainly cancer care (p = 0.03) and to agree that patients should stop chemotherapy before referral (p = 0.009). Although 60% agreed that patients perceive the term "palliative care" negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty. CONCLUSIONS: Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.


Assuntos
Atitude do Pessoal de Saúde , Neoplasias/terapia , Cuidados Paliativos/métodos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Inquéritos e Questionários , Adulto Jovem
7.
Palliat Med ; 34(1): 114-125, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31849272

RESUMO

BACKGROUND: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers. AIM: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision. DESIGN: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. SETTING/PARTICIPANTS: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study. RESULTS: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p < 0.001). Despite strongly favouring early palliative care, only half in each group agreed they had resources to deliver it; agreement was stronger among family physicians, those working on teams and those with greater availability of community and psychosocial support. Primary providers were more likely to agree that renaming the specialty 'supportive care' would increase patient comfort with early palliative care referral (47.4% vs 35.5%, p < 0.001). CONCLUSION: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care.


Assuntos
Cuidados Paliativos , Médicos/psicologia , Atenção Primária à Saúde , Especialização , Adulto , Canadá , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
8.
J Palliat Care ; 32(1): 3-10, 2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-28662623

RESUMO

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


Assuntos
Atitude do Pessoal de Saúde , Serviços de Assistência Domiciliar/organização & administração , Cuidados Paliativos/organização & administração , Médicos de Atenção Primária/psicologia , Atenção Primária à Saúde/organização & administração , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Papel Profissional , Inquéritos e Questionários
9.
Clin Transplant ; 30(12): 1591-1596, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27910190

RESUMO

Although patients within a transplant program are awaiting or have received disease modifying or curative treatment, they are also facing advanced illness and the possibility of death. The involvement of specialized palliative care services for these patients may improve symptom management and facilitate advance care planning. However, patients in organ transplantation programs have difficulty accessing palliative care resources and often do so only sporadically in the inpatient setting. Currently, there is little access to ambulatory palliative care for these patients and there have been no descriptions of programs delivering such care in the medical literature. We outline the development and structure of a Transplant Palliative Care Clinic within the University Health Network's Multi-Organ Transplant Program, in Toronto, Canada. This information may be helpful for others aiming to provide early, integrated palliative care to patients awaiting and receiving organ transplantation.


Assuntos
Centros Médicos Acadêmicos/organização & administração , Instituições de Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Transplante de Órgãos , Cuidados Paliativos/organização & administração , Adulto , Idoso , Assistência Ambulatorial/métodos , Prestação Integrada de Cuidados de Saúde/métodos , Feminino , Acessibilidade aos Serviços de Saúde/organização & administração , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Cuidados Paliativos/métodos , Desenvolvimento de Programas
10.
Healthc Q ; 18(4): 36-41, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27009706

RESUMO

University Health Network has been working to become a high-reliability organization, with a focus on safe, quality patient care. In response, the Medical Affairs Department has implemented several strategic initiatives to drive accountability, quality improvement and engagement with our physician population. One of these initiatives, the Physician Quality Improvement Initiative (PQII) is a physician-led project designed to provide active medical staff, in collaboration with their physician department chiefs, a comprehensive approach to focused and practical quality improvement in their practice. In this document, we outline the project, including its implementation strategy, logic model and outcomes, and provide discussion on how it fits into UHN's global strategy to provide safe, quality patient care.


Assuntos
Segurança do Paciente , Médicos/normas , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Melhoria de Qualidade/organização & administração , Responsabilidade Social , Hospitais Universitários/organização & administração , Humanos , Ontário , Satisfação do Paciente , Qualidade da Assistência à Saúde , Inquéritos e Questionários
11.
BMC Med Educ ; 15: 230, 2015 Dec 22.
Artigo em Inglês | MEDLINE | ID: mdl-26694493

RESUMO

BACKGROUND: The Physician Quality Improvement Initiative (PQII) uses a well-established multi-source feedback program, and incorporates an additional facilitated feedback review with their department chief. The purpose of this mixed methods study was to examine the value of the PQII by eliciting feedback from various stakeholders. METHODS: All participants and department chiefs (n = 45) were invited to provide feedback on the project implementation and outcomes via survey and/or an interview. The survey consisted of 12 questions focused on the value of the PQII, it's influence on practice and the promotion of quality improvement and accountability. RESULTS: A total of 5 chiefs and 12 physician participants completed semi structured interviews. Participants found the PQII process, report and review session helpful, self-affirming or an opportunity for self-reflection, and an opportunity to engage their leaders about their practice. Chiefs indicated the sessions strengthened their understanding, ability to communicate and engage physicians about their practice, best practices, quality improvement and accountability. Thirty participants (66.7 %) completed the survey; of the responders 75.9, 89.7, 86.7 % found patient, co-worker, and physician colleague feedback valuable, respectively. A total of 67.9 % valued their facilitated review with their chief and 55.2 % indicated they were contemplating change due to their feedback. Participants believed the PQII promoted quality improvement (27/30, 90.0 %), and accountability (28/30, 93.3 %). CONCLUSIONS: The PQII provides an opportunity for physician development, affirmation and reflection, but also a structure to further departmental quality improvement, best practices, and finally, an opportunity to enhance communication, accountability and relationships between the organization, department chiefs and their staff.


Assuntos
Feedback Formativo , Médicos/normas , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Responsabilidade Social , Pessoal Administrativo , Atitude do Pessoal de Saúde , Feminino , Humanos , Entrevistas como Assunto , Masculino , Satisfação do Paciente , Revisão por Pares , Avaliação de Programas e Projetos de Saúde/métodos , Garantia da Qualidade dos Cuidados de Saúde/métodos , Garantia da Qualidade dos Cuidados de Saúde/normas , Melhoria de Qualidade/organização & administração , Melhoria de Qualidade/normas , Autoavaliação (Psicologia) , Inquéritos e Questionários
12.
Support Care Cancer ; 22(9): 2315-22, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24671435

RESUMO

PURPOSE: The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). METHODS: Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices. RESULTS: The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p = 0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed "supportive care" (58 vs. 33 %, p < 0.0001), that palliative care adds too many providers (17 vs. 7 %, p = 0.002), and that palliative care was perceived negatively by their patients (60 vs. 43 %, p = 0.02). CONCLUSIONS: Although POs acknowledge the importance of early referral to SPC for children with cancer, there remain resource and attitudinal barriers to overcome in this regard.


Assuntos
Atitude do Pessoal de Saúde , Oncologia/métodos , Neoplasias/terapia , Cuidados Paliativos , Pediatria/estatística & dados numéricos , Médicos/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Adulto , Idoso , Canadá/epidemiologia , Criança , Assistência Integral à Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Cuidados Paliativos/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos
13.
Diagn Progn Res ; 8(1): 5, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38500236

RESUMO

BACKGROUND: Patients with dementia and their caregivers could benefit from advance care planning though may not be having these discussions in a timely manner or at all. A prognostic tool could serve as a prompt to healthcare providers to initiate advance care planning among patients and their caregivers, which could increase the receipt of care that is concordant with their goals. Existing prognostic tools have limitations. We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. METHODS: The derivation cohort will include approximately 235,000 patients with dementia, who were admitted to hospital in Ontario from April 1st, 2009, to December 31st, 2017. Predictor variables will be fully prespecified based on a literature review of etiological studies and existing prognostic tools, and on subject-matter expertise; they will be categorized as follows: sociodemographic factors, comorbidities, previous interventions, functional status, nutritional status, admission information, previous health care utilization. Data-driven selection of predictors will be avoided. Continuous predictors will be modelled as restricted cubic splines. The outcome variable will be mortality within 1 year of admission, which will be modelled as a binary variable, such that a logistic regression model will be estimated. Predictor and outcome variables will be derived from linked population-level healthcare administrative databases. The validation cohort will comprise about 63,000 dementia patients, who were admitted to hospital in Ontario from January 1st, 2018, to March 31st, 2019. Model performance, measured by predictive accuracy, discrimination, and calibration, will be assessed using internal (temporal) validation. Calibration will be evaluated in the total validation cohort and in subgroups of importance to clinicians and policymakers. The final model will be based on the full cohort. DISCUSSION: We seek to develop and validate a clinical prediction tool to estimate the risk of 1-year mortality among hospitalized patients with dementia. The model would be integrated into the electronic medical records of hospitals to automatically output 1-year mortality risk upon hospitalization. The tool could serve as a trigger for advance care planning and inform access to specialist palliative care services with prognosis-based eligibility criteria. Before implementation, the tool will require external validation and study of its potential impact on clinical decision-making and patient outcomes. TRIAL REGISTRATION: NCT05371782.

14.
BMJ Open ; 14(1): e080712, 2024 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-38296283

RESUMO

INTRODUCTION: Patients with kidney failure experience symptoms that are often under-recognised and undermanaged. These symptoms negatively impact health-related quality of life and are associated with adverse clinical outcomes. Regular symptom assessment, using electronic patient reported outcomes measure (ePROMs) linked to systematic symptom management, could improve such outcomes. Clinical implementation of ePROMs have been successful in routine oncology care, but not used for patients on dialysis. In this study, we describe a pilot study of ePROM-based systematic symptom monitoring and management intervention in patients treated with in-centre haemodialysis. METHODS AND ANALYSIS: This is a parallel-arm, controlled pilot of adult patients receiving in-centre maintenance haemodialysis. Participants in the intervention arm will complete ePROMs once a month for 6 months. ePROMs will be scored real time and the results will be shared with participants and with the clinical team. Moderate-severe symptoms will be flagged using established cut-off scores. Referral options for those symptoms will be shared with the clinical team, and additional symptom management resources will also be provided for both participants and clinicians. Participants in the control arm will be recruited at a different dialysis unit, to prevent contamination. They will receive usual care, except that they will complete ePROMs without the presentation of results to participants of the clinical team. The primary objectives of the pilot are to assess (1) the feasibility of a larger, randomised clinical effectiveness trial and (2) the acceptability of the intervention. Interviews conducted with participants and staff will be assessed using a content analysis approach. ETHICS AND DISSEMINATION: Ethical approval for this study was obtained from the University Health Network (REB#21-5199) and the William Osler Health System (#23-0005). All study procedures will be conducted in accordance with the standards of University Health Network research ethics board and with the 1964 Helsinki declaration and its later amendments. Results of this study will be shared with participants, patients on dialysis and other stakeholders using lay language summaries, oral presentations to patients and nephrology professionals. We will also be publishing the results in a peer-reviewed journal and at scientific meetings. PROTOCOL VERSION: 4 (16 November 2022). TRIAL REGISTRATION NUMBER: NCT05515991.


Assuntos
Qualidade de Vida , Diálise Renal , Adulto , Humanos , Estudos de Viabilidade , Projetos Piloto , Autorrelato , Avaliação de Sintomas , Ensaios Clínicos Controlados como Assunto
15.
Respir Med ; 226: 107607, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38548142

RESUMO

BACKGROUND: Pulmonary inhaler therapy is a core treatment modality for >600 million individuals affected by obstructive airways disease globally. Poor inhaler technique is associated with reduced disease control and increased health care utilization; however, many patients rely on the internet as a technical resource. This study assesses the content and quality of online resources describing inhaler techniques. METHODS: A Google search was conducted in April 2023 capturing the top 5 search results for 12 common inhaler devices. Websites were compared to product monographs for preparation/first use, inhalational technique, and post-usage/device care. They were also assessed using accepted quality metrics (GQS, DISCERN, JAMA Benchmark scores) and clinically relevant aspects based on the literature and consensus statements. RESULTS: Websites regularly excluded critical steps important for proper inhaler technique. They performed best on information related directly to inhalation technique (average median score 78%), whereas steps related to preparation/first use (58%) or post-usage/device care (50%) were less frequently addressed. Median GQS, DISCERN, and JAMA Benchmark scores were 3 [IQR 3-4], 3 [IQR 2-4], and 1 [IQR 1-3], respectively. Clinically relevant factors were only addressed in about one-fifth of websites with no websites addressing smoking cessation, environmental considerations, or risk factors for poor technique. CONCLUSIONS: This study highlights gaps in online resources describing inhaler technique, particularly related to preparation/first use and post-usage/device care steps. Clinically relevant factors were rarely addressed across websites. Improvements in these areas could lead to enhanced inhaler technique and clinical outcomes.


Assuntos
Internet , Nebulizadores e Vaporizadores , Humanos , Administração por Inalação , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Pneumopatias Obstrutivas/tratamento farmacológico
16.
Chest ; 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38901488

RESUMO

TOPIC IMPORTANCE: Cognitive and physical limitations are common in individuals with chronic lung diseases, but their interactions with physical function and activities of daily living are not well characterized. Understanding these interactions and potential contributors may provide insights on disability and enable more tailored rehabilitation strategies. REVIEW FINDINGS: This review summarizes a 2-day meeting of patient partners, clinicians, researchers, and lung associations to discuss the interplay between cognitive and physical function in people with chronic lung diseases. This report covers four areas: (1) cognitive-physical limitations in patients with chronic lung diseases; (2) cognitive assessments; (3) strategies to optimize cognition and motor control; and (4) future research directions. Cognitive and physical impairments have multiple effects on quality of life and daily function. Meeting participants acknowledged the need for a standardized cognitive assessment to complement physical assessments in patients with chronic lung diseases. Dyspnea, fatigue, and age were recognized as important contributors to cognition that can affect motor control and daily physical function. Pulmonary rehabilitation was highlighted as a multidisciplinary strategy that may improve respiratory and limb motor control through neuroplasticity and has the potential to improve physical function and quality of life. SUMMARY: There was consensus that cognitive function and the cognitive interference of dyspnea in people with chronic lung diseases contribute to motor control impairments that can negatively affect daily function, which may be improved with pulmonary rehabilitation. The meeting generated several key research questions related to cognitive-physical interactions in individuals with chronic lung diseases.

17.
Ann Palliat Med ; 12(2): 324-335, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37019641

RESUMO

BACKGROUND: Lung transplant (LTx) candidates experience significant respiratory symptoms often necessitating palliative care (PC) support. We aimed to describe symptoms experienced by interstitial lung disease (ILD) and chronic obstructive pulmonary disease (COPD) LTx candidates referred for PC using the Edmonton Symptom Assessment System (ESAS) and to assess the change in ESAS in relation to pre-LTx exercise capacity, oxygen requirements, and respiratory exacerbations. Understanding symptom trajectory of these two patient groups will help inform PC management. METHODS: Single centre, retrospective cohort of 102 ILD and 24 COPD LTx candidates who were assessed in the Toronto Transplant PC Clinic (TPCC) from 2014-2017. Chi-square and t-tests were used to compare clinical characteristics, physiological parameters, and ESAS scores. RESULTS: The most common symptom in ILD and COPD patients was dyspnea (median score of 8, cough 7, fatigue 6). ILD patients reported higher cough scores (7 vs. 4, P<0.001). There was no association between the change in ESAS domains and six-minute walk distance (6MWD), oxygen requirements, or respiratory exacerbations, despite increased oxygen requirements and a greater decline in 6MWD in ILD compared to COPD pre-LTx (-47 vs. -8 meters, P=0.01). ILD candidates who were delisted/died compared to those transplanted, experienced worse depression (median ESAS; 4.5 vs. 1), anxiety (5.5 vs. 2) and dyspnea (9.5 vs. 8); P<0.05. CONCLUSIONS: ILD patients had similar symptoms as COPD patients, despite increased oxygen requirements and decreasing 6MWD pre-LTx. This study highlights the importance of symptom management of LTx candidates co-managed with PC, independent of traditional measures of disease severity.


Assuntos
Doenças Pulmonares Intersticiais , Transplante de Pulmão , Doença Pulmonar Obstrutiva Crônica , Humanos , Cuidados Paliativos , Tosse , Estudos Retrospectivos , Dispneia , Gravidade do Paciente , Oxigênio
18.
J Palliat Med ; 26(8): 1121-1127, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37103488

RESUMO

Objectives: To describe the delivery of palliative care by primary providers (PP) and specialist providers (SP) to hospitalized patients with COVID-19. Methods: PP and SP completed interviews about their experiences providing palliative care. Results were analyzed using thematic analysis. Results: Twenty-one physicians (11 SP, 10 PP) were interviewed. Six thematic categories emerged. Care provision: PP and SP described their support of care discussions, symptom management, managing end of life, and care withdrawal. Patients provided care: PP described patients at end of life, with comfort-focused goals; SP included patients seeking life-prolonging treatments. Approach to symptom management: SP described comfort, and PP discomfort in providing opioids with survival-focused goals. Goals of care: SP felt these conversations were code status-focused. Supporting family: both groups indicated difficulties engaging families due to visitor restrictions; SP also outlined challenges in managing family grief and need to advocate for family at the bedside. Care coordination: internist PP and SP described difficulties supporting those leaving the hospital. Conclusion: PP and SP may have a different approach to care, which may affect consistency and quality of care.


Assuntos
COVID-19 , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Pesquisa Qualitativa , Morte
19.
CMAJ Open ; 11(1): E110-E117, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36750247

RESUMO

BACKGROUND: Little is understood of the consequences of restrictive visitor policies that were implemented in hospitals to minimize risk of infection during the COVID-19 pandemic. The objective of this study was to describe physician experiences with these policies and reflections of their effects. METHODS: We conducted semistructured phone interviews from September 2020 to March 2021 with physicians practising in Ontario hospitals, recruited via professional networks and snowball sampling. We audio-recorded, transcribed and analyzed interviews to describe and interpret overarching themes by thematic analysis. RESULTS: We interviewed 21 physicians (5 intensivists, 5 internists, 11 specialists in palliative care). Four main thematic categories emerged, including provider, system, patient and caregiver effects. Provider-related factors included increased time and effort on communication with a need to establish limits; increased effort to develop rapport with caregivers; lack of caregiver input on patient care; the need to act as a caregiver surrogate; and the emotional toll of being a gatekeeper or advocate for visitors, exacerbated by lack of evidence for restrictions and inconsistent enforcement. System effects included the avoidance of hospital admission and decreased length of stay, leading to readmissions, increased deaths at home and avoidance of transfer to other facilities with similar policies. Patient-related factors included isolation and dying alone; lack of caregiver advocacy; and prioritization of visitor presence that, at times, resulted in a delay or withdrawal of aspects of care. Caregiver-related factors included inability to personally assess patient health, leading to poor understanding of patient status and challenging decision-making; perceived inadequate communication; difficulty accessing caregiver supports; and increased risk of complicated grief. Participants highlighted a disproportionate effect on older adults and people who did not speak English. INTERPRETATION: Our study highlights substantial negative consequences of restrictive visitor policies, with heightened effects on older adults and people who did not speak English. Research is required to identify whether the benefits of visitor restrictions on infection control outweigh the numerous deleterious consequences to patients, families and care providers.


Assuntos
COVID-19 , Humanos , Idoso , Pandemias , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Políticas
20.
J Pain Symptom Manage ; 66(2): 93-101, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37084825

RESUMO

CONTEXT: Early palliative care (EPC) is widely recommended but its implementation may be challenging. OBJECTIVES: We conducted a qualitative analysis of Canadian palliative care physicians' opinions about conditions necessary to provide EPC. METHODS: A survey assessing attitudes and opinions regarding EPC was distributed to physicians providing primary or specialized palliative care, as identified by the Canadian Society of Palliative Care Physicians. The survey included an optional final section for respondents' general comments; we screened these for relevance to our study aims and conducted a thematic analysis of relevant comments. RESULTS: Of 531 completed surveys, 129 (24%) respondents provided written comments, of whom 104 mentioned conditions they felt to be necessary to provide EPC. Four key themes were identified: 1) Clear delineation of roles of primary and specialized palliative care physicians-all physicians should be empowered to provide primary palliative care, with specialists providing additional support; 2) Shared care with needs-dependent referral-primary and specialized palliative care physicians should work collaboratively, with referral to specialized palliative care based on need rather than on prognosis; 3) Adequate resources to support primary palliative care-education, financial incentives, and collaboration with interdisciplinary team members such as nurses and specialized providers were specifically mentioned; 4) Addressing the misconception that palliative care equals end-of-life care-there was particular emphasis on education of both healthcare providers and the public. CONCLUSION: Changes are necessary at the level of palliative care referral systems, providers, resources, and policy to enable implementation of EPC.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Médicos , Assistência Terminal , Humanos , Cuidados Paliativos , Canadá , Atitude do Pessoal de Saúde
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