Improving access to palliative care for people experiencing socioeconomic inequities: findings from a community-based pilot research study. / Améliorer l'accès aux soins palliatifs pour les personnes confrontées à des iniquités socioéconomiques : conclusions d'une étude pilote de recherche communautaire.

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.

Comprehensive assessment during palliative radiotherapy consultation optimizes supportive care for patients with advanced breast cancer.

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.

Advance Care Planning Preferences and Readiness in Cirrhosis: A Prospective Assessment of Patient Perceptions and Knowledge.

Background: In 2014, the province of Alberta launched a campaign to promote public awareness of advance care planning (ACP) and its associated two-part documentation-a Goals of care designation (GCD, a medical order written by a health care practitioner detailing wishes for care) and a personal directive (PD, a document naming a surrogate decision maker). Notably, unlike the GCD, the PD can be self-initiated independent of a health practitioner. Objective: Two years after the campaign, we aimed to assess knowledge and recall of participation in ACP among cirrhosis patients. Design/Setting: Consecutive adult cirrhosis patients attending one of two specialty cirrhosis clinics in Edmonton, Alberta, were surveyed. Results: Ninety-seven patients were included. Mean model for end-stage liver disease was 12. Although 97% of patients indicated it was extremely important to know the reality of their illness, only 53% understood that cirrhosis would affect their future quality of life. Thirty-three percent of patients had completed a PD and 14% had completed a GCD. Seventy-eight percent of patients believed a GCD was important to them and 85% preferred to complete it in an outpatient clinic setting. Only a minority of patients who had taken the initiative to complete a PD in the community also had a GCD. Conclusions: Despite efforts to raise awareness of and educate Albertans about ACP, <20% of cirrhosis patients have a completed GCD. Additional strategic prioritization is required in both patients and providers to ensure that health practitioner-facilitated ACP is carried out as standard-of-care in all patients with cirrhosis.

Automatic referral to standardize palliative care access: an international Delphi survey.

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.

Development of a French Version of the Edmonton Symptom Assessment System-Revised: A Pilot Study of Palliative Care Patients' Perspectives.

BACKGROUND: The Edmonton Symptom Assessment System-revised (ESAS-r) is a nine-item self-report symptom intensity tool developed for palliative care patients, with the option of adding a 10th patient-specific symptom. Due to growing international uptake, the ESAS-r has been translated into different languages. There has not been agreement, however, regarding a standard process for translation into multiple languages, which also includes patients' perspectives. OBJECTIVE: The purpose of this study was to develop a French version of the ESAS-r, using a standardized translation protocol, and to obtain palliative care patients' perspectives regarding this translated tool. DESIGN: We developed a French version of the ESAS-r, using a standard translation method, involving both professional translators (n = 2) and bilingual palliative care experts (n = 3). Fifteen Francophone participants recruited from palliative care sites in two urban centers in Canada completed the ESAS-r and provided feedback on the translation, in the presence of a trained interviewer. Descriptive statistics and thematic analysis were used to analyze the quantitative and qualitative data, respectively. SETTING/SUBJECTS: Fifteen Francophone participants were recruited from palliative care sites in two urban centers in Canada. MEASUREMENTS: Participants completed the ESAS-r and provided feedback on the translation in the presence of a trained interviewer. Descriptive statistics and thematic analysis were used to analyze the quantitative and qualitative data, respectively. RESULTS: Based on participants' concerns, translations for four of the nine symptoms were revised: drowsiness, nausea, lack of appetite, and shortness of breath. Concerns expressed for three additional symptoms (depression, anxiety, and well-being) were related to overall difficulty rating these symptoms, not specific to the translation. CONCLUSION: The French version of the ESAS-r is a credible tool for symptom assessment in Francophone patients. The study findings provide a vital step in the development of a standardized translation protocol, including patients' perspectives, which can be applied to other languages.

Improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: report of a pilot project.

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.

The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement.

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.

A multicenter study comparing two numerical versions of the Edmonton Symptom Assessment System in palliative care patients.

CONTEXT: The Edmonton Symptom Assessment System (ESAS) is a widely used, self-report symptom intensity tool for assessing nine common symptoms in palliative care, with ratings ranging from 0 (none, best) to 10 (worst). Based on a "think-aloud" study of 20 advanced cancer patients, the ESAS was revised (ESAS-r). OBJECTIVES: To compare the consistency of patients' symptom ratings and obtain patient perspectives regarding ease of understanding and completion between the ESAS and ESAS-r. METHODS: Cognitively intact patients (n=160) were recruited from eight palliative care sites in Canada and Switzerland, using cross-sectional sampling (20 per site). Consenting patients completed the ESAS, ESAS-r, and a structured interview. Intraclass correlation coefficients (ICCs) were calculated to assess rating consistency. RESULTS: In total, 1046 patients were screened. One hundred sixty were enrolled and evaluable (female 51%, median age 61 [range 34-92], lung cancer 26%, gastrointestinal cancer 22%). Mean ESAS scores ranged from 1.2 (nausea, standard deviation [SD] 2.1) to 4.3 (appetite, SD 3.3). ICCs ranged from 0.65 to 0.83, with lowest scores (<0.8) for drowsiness, appetite, and well-being. Although most patients rated both versions as very easy or easy to understand and complete, the ESAS-r was significantly easier to understand than the ESAS (P=0.008). Significantly, more patients preferred the ESAS-r (39%) than the ESAS (14%, P<0.001) because of its definitions, clarity, and format. CONCLUSION: The ESAS-r retains core elements of the ESAS, with improved interpretation and clarity of symptom intensity assessment. It represents the next generation of ESAS development, with further validation recommended for drowsiness, appetite, and well-being.