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BACKGROUND: Cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. Patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancer patients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.
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Neoplasias , Cuidados Paliativos , Humanos , América Latina , Canadá , Saúde Pública , Neoplasias/terapiaRESUMO
PURPOSE: Palliative radiotherapy (PRT) in advanced cancer improves symptom control and quality of life. PRT consultations take place in various clinical settings, including through dedicated rapid access clinics. We examined holistic assessment and PRT delivery by consultation setting. METHODS: We analyzed patients with breast cancer who died (01/04/2013-31/03/2014), after at least one lifetime PRT consultation. Data abstracted included Karnofsky Performance Status (KPS), Edmonton Symptom Assessment System Revised (ESAS-r) ratings, and PRT timelines. Descriptive statistics, t tests of proportions, independent t tests, and chi-square tests were calculated. RESULTS: One hundred thirty patients were assessed for PRT over 224 consults, 28/224 (12.5%) in the rapid access clinic. In non-rapid access versus rapid access visits, KPS was documented in 30.1% versus 89.3%, and medication history in 53.6% versus 96.4%, respectively (both p < 0.0001). Baseline ESAS-r scores were available for 67.9% of rapid access visits, versus no non-rapid access visit. Rapid access consults had a higher proportion of subsequent supportive care referrals (46.4% versus 8.2%; p < 0.0001). Same day PRT start occurred in 37% of rapid access versus 23.4% of non-rapid access visits (p = 0.13). CONCLUSIONS: Assessment for PRT by a dedicated multidisciplinary team provides a comprehensive picture of patient needs and streamlines PRT delivery, essential to personalizing supportive care.
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Neoplasias da Mama , Neoplasias , Neoplasias da Mama/radioterapia , Feminino , Humanos , Avaliação de Estado de Karnofsky , Neoplasias/radioterapia , Cuidados Paliativos , Qualidade de Vida , Encaminhamento e ConsultaRESUMO
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.
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Neoplasias , Cuidados Paliativos , Adulto , Canadá , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Encaminhamento e Consulta , Estudos Retrospectivos , Dados de Saúde Coletados RotineiramenteRESUMO
Disparities in access to palliative care services for populations with social disparities have been reported in Western countries. Studies indicate that these populations tend to report higher symptom distress than other population groups. We need to further investigate how social disparities influence symptom burden to improve symptom relief in these populations. PURPOSE: To examine the perspectives of specialist palliative care providers concerning the relationship between social disparities and symptom burden in populations with advanced cancer. METHODS: Two sequential qualitative studies that followed a combination of interpretive and critical methodologies. The interpretive approach was outlined by van Manen's hermeneutic phenomenology while the critical component was informed by the works of Paulo Freire. Participants involved two specialist palliative care teams from a large acute care hospital and a large cancer center in Western Canada. Participants included 11 palliative care providers including registered nurses, nurse practitioners, physicians, and pharmacists. RESULTS: Participants perceived that social conditions that might aggravate symptom burden included low income, low education, lack of social support, language barriers, and rurality. The relationship between income and symptom burden reflected diverse views. Participants identified populations prone to complex symptom burden including homeless individuals, Indigenous people, people with a history of addictions, and people with mental health or psychosocial issues. CONCLUSION: Participants perceived that social disparities may increase symptom complexity in populations with advanced cancer. Participants did not identify ethnicity and gender as influencing symptom burden. Further research is needed to examine the interactions of social disparities, patient individuality, and symptom burden.
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Acessibilidade aos Serviços de Saúde , Disparidades em Assistência à Saúde , Neoplasias/economia , Neoplasias/terapia , Cuidados Paliativos/economia , Canadá , Feminino , Pessoal de Saúde , Humanos , Masculino , Neoplasias/patologia , Cuidados Paliativos/métodos , Pesquisa Qualitativa , Classe Social , Apoio SocialRESUMO
PURPOSE: Palliative care referral is primarily based on clinician judgment, contributing to highly variable access. Standardized criteria to trigger automatic referral have been proposed, but it remains unclear how best to apply them in practice. We conducted a Delphi study of international experts to identify a consensus for the use of standardized criteria to trigger automatic referral. METHODS: Sixty international experts stated their level of agreement for 14 statements regarding the use of clinician-based referral and automatic referral over two Delphi rounds. A consensus was defined as an agreement of ≥70% a priori. RESULTS: The response rate was 59/60 (98%) for the first round and 56/60 (93%) for the second round. Twenty-six (43%), 19 (32%), and 11 (18%) respondents were from North America, Asia/Australia, and Europe, respectively. The panel reached consensus that outpatient palliative care referral should be based on both automatic referral and clinician-based referral (agreement = 86%). Only 18% felt that referral should be clinician-based alone, and only 7% agreed that referral should be based on automatic referral only. There was consensus that automatic referral criteria may increase the number of referrals (agreement = 98%), facilitate earlier palliative care access, and help administrators to set benchmarks for quality improvement (agreement = 86%). CONCLUSIONS: Our panelists favored the combination of automatic referral to augment clinician-based referral. This integrated referral framework may inform policy and program development.
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Acessibilidade aos Serviços de Saúde , Cuidados Paliativos/métodos , Encaminhamento e Consulta , Consenso , Técnica Delphi , Feminino , Humanos , Masculino , Pacientes Ambulatoriais , Cuidados Paliativos/normas , Melhoria de Qualidade , Inquéritos e QuestionáriosRESUMO
Although outpatient specialty palliative-care clinics improve outcomes, there is no consensus on who should be referred or the optimal timing for referral. In response to this issue, we did a Delphi study to develop consensus on a list of criteria for referral of patients with advanced cancer at secondary or tertiary care hospitals to outpatient palliative care. 60 international experts (26 from North America, 19 from Asia and Australia, and 11 from Europe) on palliative cancer care rated 39 needs-based criteria and 22 time-based criteria in three iterative rounds. Nearly all experts responded in each round. Consensus was defined by an a-priori agreement of 70% or more. Panellists reached consensus on 11 major criteria for referral: severe physical symptoms, severe emotional symptoms, request for hastened death, spiritual or existential crisis, assistance with decision making or care planning, patient request for referral, delirium, spinal cord compression, brain or leptomeningeal metastases, within 3 months of advanced cancer diagnosis for patients with median survival of 1 year or less, and progressive disease despite second-line therapy. Consensus was also reached on 36 minor criteria for specialist palliative-care referral. These criteria, if validated, could provide guidance for identification of patients suitable for outpatient specialty palliative care.
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Neoplasias/terapia , Cuidados Paliativos , Encaminhamento e Consulta , Consenso , Técnica Delphi , Humanos , Medicina , Pacientes AmbulatoriaisRESUMO
BACKGROUND: Physical activity has been shown to positively impact cancer-related fatigue, physical functioning and quality of life outcomes in early stage cancer patients, however its role at the end stage of cancer has yet to be determined. Brain metastases are amongst the most common neurological complications of advanced cancer, with significant deterioration in fatigue and quality of life. The purpose of the present study was to examine the physical activity interests and preferences of cancer patients with brain metastases initiating palliative whole brain radiotherapy. METHODS: Thirty-one patients aged 18 years or older, cognitively intact, diagnosed with brain metastases, and with Palliative Performance Scale scores of greater than 30%, were recruited from a multidisciplinary outpatient brain metastases clinic. An interviewer-administered survey was used to assess physical activity interests and preferences of participants who were embarking upon palliative whole brain radiotherapy. RESULTS: 87% (n = 27) of participants felt that physical activity was important, however there was limited interest in participating in a structured program at the onset of palliative whole brain radiotherapy. Lung cancer diagnosis was associated with being less interested in participating in a physical activity program, and feeling less able to participate in a physical activity program at the onset of palliative whole brain radiotherapy. CONCLUSIONS: Cancer patients with brain metastases demonstrate limited interest and varied preferences for physical activity during palliative whole brain radiotherapy. Additional pilot work with this patient population is needed before physical activity interventions can be tested in clinical research.
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Neoplasias Encefálicas/psicologia , Atividade Motora , Metástase Neoplásica/terapia , Preferência do Paciente/psicologia , Adulto , Idoso , Atitude Frente a Saúde , Neoplasias Encefálicas/radioterapia , Estudos Transversais , Fadiga/psicologia , Fadiga/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Qualidade de VidaRESUMO
OBJECTIVE: The aim of this study is to examine the demographic, medical, and social-cognitive correlates of objectively measured sedentary behavior in advanced cancer patients with brain metastases. METHODS: Advanced cancer patients diagnosed with brain metastases, aged 18 years or older, cognitively intact, and with palliative performance scale greater than 30%, were recruited from a Rapid Access Palliative Radiotherapy Program multidisciplinary brain metastases clinic. A cross-sectional survey interview assessed the theory of planned behavior variables and medical and demographic information. Participants wore activPAL™ (PAL Technologies Ltd, Glasgow, United Kingdom) accelerometers recording time spent supine, sitting, standing, and stepping during 7 days encompassing palliative whole brain radiotherapy treatments. RESULTS: Thirty-one patients were recruited. Correlates of median time spent supine or sitting in hours per day were instrumental attitude (i.e., perceived benefits) of physical activity (r = -0.42; p = 0.030) and affective attitude (i.e., perceived enjoyment) of physical activity (r = -0.43; p = 0.024). Moreover, participants who sat or were supine for greater than 20.7 h per day reported significantly lower instrumental attitude (M = 0.7; 95% CI = 0.0-1.4; p = 0.051) and affective attitude (M = 0.7; 95% CI = 0.0-1.4; p = 0.041). Finally, participants who were older than 60 years of age spent more time sitting or being supine. CONCLUSIONS: Instrumental attitude and affective attitude were the strongest correlates of objectively measured sedentary behavior. This information could inform intervention studies to increase physical activity in advanced cancer patients with brain metastases.
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Afeto , Atitude Frente a Saúde , Neoplasias Encefálicas/secundário , Intenção , Atividade Motora , Comportamento Sedentário , Acelerometria , Fatores Etários , Atitude , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Teoria Psicológica , AutoeficáciaRESUMO
Background: Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. Objectives: To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Design: Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. Methods: The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Results: Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Conclusion: Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.
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Objective: In Canada, populations experiencing socioeconomic inequality have lower rates of access to screening and diagnosis and higher mortality rates than people from higher-income areas. Limited evidence exists concerning their experiences when living with advanced cancer. We explored how socioeconomic inequality shapes the experiences of patients with advanced cancer. Methods: We utilized a qualitative study design that combined tenets of hermeneutic phenomenological inquiry and critical theory. Four individuals with advanced cancer from low-income neighborhoods, three family members, and six cancer care providers were accrued through a tertiary cancer center in a western Canadian city. One-on-one interviews and brief notes were used for data collection. Data were analyzed through thematic analysis. Results: Three interrelated themes were identified: 'Lack of access to socioeconomic supports,' 'Gaps in access to health care resources and services,' and 'Limited access to symptom relief.' Patients experienced inadequate finances, housing, and transportation. Most patients lived alone and had limited family and social support. Patients reported lack of knowledge of available resources and health system navigation issues, including communication problems with providers and among levels of care. Cancer care providers and patients described issues achieving symptom relief as well as challenges associated with extensive disease. Conclusions: Study findings suggest that socioeconomic inequality interferes with the ability of persons with advanced cancer to access health care and contributes to less optimal cancer outcomes. Socioeconomic inequality may increase symptom severity. Findings call for the development of tailored interventions for populations with advanced cancer and socioeconomic inequality.
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(1) Background: This observational cohort study describes the frequency, content, and satisfaction with advance care planning (ACP) conversations with healthcare providers (HCPs), as reported by patients with advanced colorectal cancer. (2) Methods: The patients were recruited from two tertiary cancer centers in Alberta, Canada. Using the My Conversations survey with previously validated questions, the patients were asked about specific ACP elements discussed, with which HCPs these elements were discussed, their satisfaction with these conversations, and whether they had a goals of care designation (GCD) order. We surveyed and analyzed data from the following four time points: enrollment, months 1, 2, and 3. (3) Results: In total, 131 patients were recruited. At enrollment, 24% of patients reported discussing at least one ACP topic. From enrollment to month 3, patients reported a high frequency of discussions (80.2% discussed fears, 71.0% discussed prognosis, 54.2% discussed treatment preferences at least once); however, only 44.3% of patients reported discussing what is important to them in considering health care preferences. Patients reported having ACP conversations most often with their oncologists (84.7%) and cancer clinic nurses (61.8%). Patients reported a high level of satisfaction with their ACP conversations, with over 80% of patients reported feeling heard and understood. From enrollment to month 3, there was an increase in the number of patients with a GCD order from 53% to 74%. (4) Conclusions: Patients reported more frequent conversations compared to the literature and clinical documentation. While the satisfaction with these conversations is high, there is room for quality improvement, particularly in eliciting patients' personal goals for their treatment.
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Planejamento Antecipado de Cuidados , Neoplasias Colorretais , Humanos , Alberta , Satisfação do PacienteRESUMO
PURPOSE: Palliative care (PC) and palliative radiotherapy (RT) consultation are integral to the care of patients with advanced cancer. These services are not universally available in rural areas, and travel to urban centers to access them can be burdensome for patients and families. The objectives of our study were to assess the feasibility of using videoconferencing to provide specialist multidisciplinary PC and palliative RT consultation to cancer patients in rural areas and to explore symptom, cost, and satisfaction outcomes. METHODS: The Virtual Pain and Symptom Control and Palliative Radiotherapy Clinic was piloted from January 2008 to March 2011. Cancer patients in rural northern Alberta attended local telehealth facilities, accompanied by nurses trained in symptom assessment. The multidisciplinary team at the Cross Cancer Institute in Edmonton was linked by videoconference. Team recommendations were sent to the patients' family physicians. Data were collected on referral, clinical, and consultation characteristics and symptom, cost, and satisfaction outcomes. RESULTS: Forty-four initial consultation and 28 follow-up visits took place. Mean Edmonton Symptom Assessment Scale scores for anxiety and appetite were statistically significantly improved at the first follow-up visit (p < 0.01 and p = 0.03, respectively). Average per visit savings for patients seen by telehealth versus attending the CCI were 471.13 km, 7.96 hours, and Cdn $192.71, respectively. Patients and referring physicians indicated a high degree of satisfaction with the clinic. CONCLUSION: Delivery of specialist multidisciplinary PC consultation by videoconferencing is feasible, may improve symptoms, results in cost savings to patients and families, and is satisfactory to users.
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Acessibilidade aos Serviços de Saúde , Neoplasias/radioterapia , Cuidados Paliativos , Consulta Remota/métodos , Serviços de Saúde Rural , Comunicação por Videoconferência , Adulto , Idoso , Idoso de 80 Anos ou mais , Alberta , Cuidadores/psicologia , Estudos de Viabilidade , Feminino , Humanos , Comunicação Interdisciplinar , Masculino , Pessoa de Meia-Idade , Neoplasias/patologia , Satisfação do Paciente , Projetos Piloto , Inquéritos e Questionários , Telemedicina , Adulto JovemRESUMO
BACKGROUND: Although meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care. METHODS: Nine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels. RESULTS: Of the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention. CONCLUSIONS: This case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population. TRIAL REGISTRATION: This study is registered under ClinicalTrials.gov as NCT00438620.
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Literature assessing the impact of palliative care (PC) consultation on aggressive care at the end of life (EOL) within a comprehensive integrated PC program is limited. We retrospectively reviewed patients with advanced cancer who received oncological care at a Canadian tertiary center, died between April 2013 and March 2014, and had access to PC consultation in all healthcare settings. Administrative databases were linked, and medical records reviewed. Composite score for aggressive EOL care was calculated, assigning a point for each of the following: ≥2 emergency room visits, ≥2 hospitalizations, hospitalization >14 days, ICU admission, and chemotherapy administration in the last 30 days of life, and hospital death. Multivariable logistic regression was adjusted for age, sex, income, cancer type and PC consultation for ≥1 aggressive EOL care indicator. Of 1414 eligible patients, 1111 (78.6%) received PC consultation. In multivariable analysis, PC consultation was independently associated with lower odds of ≥1 aggressive EOL care indicator (OR 0.49, 95% CI 0.38−0.65, p < 0.001). PC consultation >3 versus ≤3 months before death had a greater effect on lower aggressive EOL care (mean composite score 0.59 versus 0.88, p < 0.001). We add evidence that PC consultation is associated with less aggressive care at the EOL for patients with advanced cancer.
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Neoplasias , Assistência Terminal , Humanos , Cuidados Paliativos , Estudos Retrospectivos , Canadá , Neoplasias/terapia , Encaminhamento e ConsultaRESUMO
INTRODUCTION: In Canada, people experiencing socioeconomic inequities have higher rates of late diagnosis and lower survival rates than the general population. Palliative care services focussed on this population are scarce. We developed a community-based nursing intervention to improve access to palliative care for people experiencing socioeconomic inequities and living with life-limiting illnesses in an urban Canadian setting. METHODS: This community-based, qualitative research study combined critical and participatory research methodologies. The study was conducted in partnership with the Palliative Care Outreach Advocacy Team (PCOAT) based in Edmonton, Alberta, a team dedicated to serving populations experiencing socioeconomic inequities who require palliative care. Following an exploratory phase that served to delineate the intervention, we undertook a one-year pilot implementation during which a part-time registered nurse (RN) joined PCOAT. The RN engaged in trust building, resolution of health and practical needs and complex care coordination. Twenty-five patients participated in the intervention. Participants were interviewed at least once to explore their experiences with the intervention. Data were analyzed through thematic analysis. RESULTS: Most participants were men, were Indigenous and had advanced cancer. Participants had significant financial concerns, lived or had lived in precarious housing situations and had previously faced serious challenges accessing health care. Participants reported social and health needs including housing, finances, transportation, symptom control, harm reduction and end-of-life care. Participants reported improved access to health and social services and expressed satisfaction with the study intervention. CONCLUSION: Study findings suggest the study intervention may have contributed to improved access to palliative care, improved experiences for participants and increased equity in the delivery of care.
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Cuidados Paliativos , Assistência Terminal , Masculino , Humanos , Feminino , Atenção à Saúde , Pesquisa Qualitativa , Fatores Socioeconômicos , AlbertaRESUMO
OBJECTIVE: The Edmonton Symptom Assessment System (ESAS) has been proposed as one element of a distress screening strategy in cancer patients. It consists of 11-point numerical rating scales for self-report of nine common symptoms of cancer, with a 10th scale for a patient-specific symptom. The ESAS has undergone widespread adoption internationally for clinical, research and administrative purposes. Despite its rapid uptake, validity evidence has lagged behind, and concerns have been raised about feasibility and usefulness. The objective of this paper is to provide a synthesis of a program of research focusing on the psychometric properties of the ESAS. METHODS: We describe and discuss a series of three ESAS studies undertaken by our group: (i) a review of ESAS validation studies (1991-2006); (ii) a think-aloud study conducted in 20 advanced cancer patients; and (iii) a prospective multicenter study conducted in 160 patients in different palliative care settings, comparing the ESAS with a revised version (ESAS-r). RESULTS: The review identified 13 articles focusing on gathering reliability and/or validity evidence; the need to standardize the ESAS and conduct further validation research was apparent. The think-aloud study elucidated the complex cognitive processes by which patients arrive at symptom ratings and areas of potential difficulty in understanding and completing the ESAS. The multicenter study demonstrated that the ESAS-r was significantly easier for patients to understand. CONCLUSIONS: Overall, our findings support consideration of the ESAS and its successor, the ESAS-r, for use in distress screening in cancer patients. Areas for future research will be presented. Copyright © 2011 John Wiley & Sons, Ltd.
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Neoplasias/psicologia , Psicometria/instrumentação , Psicometria/normas , Estresse Psicológico/diagnóstico , Inquéritos e Questionários/normas , Humanos , Idioma , Neoplasias/complicações , Satisfação do Paciente , Pacientes/psicologia , Qualidade de Vida , Reprodutibilidade dos Testes , Autorrelato , Índice de Gravidade de Doença , Perfil de Impacto da Doença , Estudos de Validação como AssuntoRESUMO
BACKGROUND: Increasing evidence points to the theory of planned behavior as a useful framework to understand physical activity behavior in cancer patients. OBJECTIVE: Our primary aim was to examine the demographic, medical, and social-cognitive correlates of physical activity in palliative cancer patients. METHODS: A cross-sectional survey was administered to advanced cancer patients aged 18 years or older with a clinician-estimated life expectancy of less than 12 months and Palliative Performance Scale >30%, from outpatient palliative care, oncology clinics, and palliative home care. RESULTS: Fifty participants were recruited. Correlates of total physical activity levels were affective attitude (r = 0.36, P = .011), self-efficacy (r = 0.36, P = .010), and intention (r = 0.30, P = .034). Participants who reported 60 minutes or more of total physical activity daily reported significantly higher affective attitude (M = 0.9, 95% confidence interval [CI] 0.26-1.6, P = .008) and self-efficacy (M = 0.8, 95% CI 0.0-1.5, P = .046). Participants <60 years of age (M = 343, 95% CI -7 to 693, P = .054) and who were normal or underweight (M = 333, 95% CI -14 to 680, P = .059) reported higher weekly minutes of total physical activity. LIMITATIONS: Our small sample may not be representative of the total palliative cancer population. CONCLUSIONS: Affective attitude, self-efficacy, and intention were the strongest correlates of total physical activity levels, and younger and normal/underweight participants did more physical activity.
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Exercício Físico/psicologia , Comportamentos Relacionados com a Saúde , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Atitude , Estudos Transversais , Feminino , Humanos , Intenção , Masculino , Pessoa de Meia-Idade , Autoeficácia , Índice de Gravidade de Doença , Apoio Social , Fatores SocioeconômicosRESUMO
BACKGROUND: Early integration of Specialist Palliative Care (SPC) with oncological care improves quality of life (QOL) of patients with advanced cancer; however, patients tend to access SPC late in their disease trajectory, if at all. Routine referral of all patients to SPC would quickly overwhelm available resources, suggesting a need for widespread accessibility of generalist PC competencies. This has been increasingly facilitated by dedicated palliative radiotherapy (PRT) clinics, such as the multidisciplinary Palliative Radiation Oncology (PRO) program at the Cross Cancer Institute (CCI). Our objectives were to estimate the proportion of patients dying with breast cancer seen in consultation for PRT, and the interaction between PRT delivery and SPC referral. METHODS: This secondary analysis of routinely collected health data examined female adults with breast cancer who died between 04/01/2013 and 03/31/2014, and had advanced disease while under the care of a CCI oncologist. Alberta Cancer Registry, electronic medical records, and Edmonton Zone Palliative Care Program data were linked. During the study period, referrals for SPC, and setting of assessment for PRT, were at the attending physicians' discretion. Clinical data were abstracted including summaries of intervals between PRT and SPC consultations, as well as from consults to death. Kaplan-Meier survival estimates, independent samples median tests, t tests of proportions, independent t tests and Chi-square tests compared groups. RESULTS: Of 194 patients, median age at cancer diagnosis was 59 years (range 24-95yrs), median one-way distance from the CCI was 18.8km, and overall median survival (MS) was 4.4 years. 130/194 (67.0%) and 110/194 (56.7%) were assessed for PRT and by SPC respectively; 22/194 (11.3%) saw neither prior to death. Median time between first PRT consultation and death was 11.7 months (interquartile range 3.7-22.2 mos). Median time between first SPC consult and death was 2.9 mos (IQR 1-6.2 mos). 65.6% of those who never had PRT ultimately required SPC involvement, versus 52.3% of those receiving PRT. Of the 68/130 who had both, 91.2% were seen for PRT first, a median of 7.9 mos prior to seeing SPC. Patients who had SPC consultation without previous PRT were seen by PC a median 1.5 mos prior to death (IQR 0.6-4.9 mos). Patients seen for PRT outside of the PRO clinic had SPC consultation a median of 3.3 mos before death (IQR 1.2-6.2 mos), versus those seen by the PRO clinic team, who were referred a median of 6.2 mos prior (IQR 2.4-8.1 mos). CONCLUSIONS: Fewer advanced breast cancer patients who received PRT ultimately required SPC consultation, but those who did were referred earlier in their disease course, especially if PRT assessment and delivery had taken place in the setting of a dedicated multidisciplinary team.
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Neoplasias da Mama , Radioterapia (Especialidade) , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/radioterapia , Feminino , Humanos , Pessoa de Meia-Idade , Cuidados Paliativos , Equipe de Assistência ao Paciente , Qualidade de Vida , Dados de Saúde Coletados Rotineiramente , Adulto JovemRESUMO
OBJECTIVE: To assess the prevalence and association of depression among Canadian adults with cancer in a population-based context. METHODS: The Canadian Community Health Survey (CCHS) (2015-2016) was accessed and adult participants with cancer who completed the Personal Health Questionnaire (PHQ9) were included in the current analysis. Multivariable logistic regression was conducted to elucidate the factors associated with the development of depression. An additional multivariable logistic regression analysis was conducted to evaluate the association of depression with ever contemplating suicide (suicidal ideation). RESULTS: A total of 867 participants with cancer have completed PHQ9 were included in the current analysis (including 603 participants (69.6%) without depression (PHQ9 ≤ 4) and 264 participants (30.4%) with depression (PHQ9 > 4)). Moreover, 92 participants (10.6%) fulfill the criteria for moderate/severe depression (PHQ9 > 9). The following factors were associated with the presence of depression (PHQ9 > 4), female sex (OR for males versus females: 0.56; 95% CI: 0.34-0.93; P = 0.02); poor self-perceived health (OR for excellent health versus poor health: 0.12; 95% CI: 0.02-0.62; P = 0.01) and poor self-perceived mental health (OR for excellent mental health versus poor mental health: 0.02; 95% CI: <0.01-0.24; P < 0.01). Additional multivariable logistic regression analysis showed that depression (PHQ9 > 4) was associated with a higher probability of suicidal ideation (OR for no depression versus depression: 0.43; 95% CI: 0.21-0.91; P = 0.02). CONCLUSIONS: Depression seems to be an underdiagnosed and possibly undertreated comorbid condition among Canadian adults with cancer.
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Depressão/epidemiologia , Saúde Mental , Neoplasias/psicologia , Ideação Suicida , Adulto , Idoso , Canadá/epidemiologia , Estudos Transversais , Depressão/psicologia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Índice de Gravidade de Doença , Fatores SexuaisRESUMO
Despite the known benefits, healthcare systems struggle to provide early, integrated palliative care (PC) for advanced cancer patients. Understanding the barriers to providing PC from the perspective of oncology clinicians is an important first step in improving care. A 33-item online survey was emailed to all oncology clinicians working with all cancer types in Alberta, Canada, from November 2017 to January 2018. Questions were informed by Michie's Theoretical Domains Framework and Behaviour Change Wheel (BCW) and queried (a) PC provision in oncology clinics, (b) specialist PC consultation referrals, and (c) working with PC consultants and home care. Respondents (n = 263) were nurses (41%), physicians (25%), and allied healthcare professionals (18%). Barriers most frequently identified were "clinicians' limited time/competing priorities" (64%), "patients' negative perceptions of PC" (63%), and clinicians' capability to manage patients' social issues (63%). These factors mapped to all three BCW domains: motivation, opportunity, and capability. In contrast, the least frequently identified barriers were clinician motivation and perceived PC benefits. Oncology clinicians' perceptions of barriers to early PC were comparable across tumour types and specialties but varied by professional role. The main challenges to early integrated PC include all three BCW domains. Notably, motivation is not a barrier for oncology clinicians; however, opportunity and capability barriers were identified. Multifaceted interventions using these findings have been developed, such as tip sheets to enhance capability, reframing PC with patients, and earlier specialist PC nursing access, to enhance clinicians' use of and patients' benefits from an early PC approach.