Clinical Care Conditions and Needs of Palliative Care Patients from Five Italian Regions: Preliminary Data of the DEMETRA Project

In order to plan the right palliative care for patients and their families, it is essential to have detailed information about patients’ needs. To gain insight into these needs, we analyzed five Italian local palliative care networks and assessed the clinical care conditions of patients facing the complexities of advanced and chronic disease. A longitudinal, observational, noninterventional study was carried out in five Italian regions from May 2017 to November 2018. Patients who accessed the palliative care networks were monitored for 12 months. Sociodemographic, clinical, and symptom information was collected with several tools, including the Necesidades Paliativas CCOMS-ICO (NECPAL) tool, the Edmonton Symptom Assessment System (ESAS), and interRAI Palliative Care (interRAI-PC). There were 1013 patients in the study. The majority (51.7%) were recruited at home palliative care units. Cancer was the most frequent diagnosis (85.4%), and most patients had at least one comorbidity (58.8%). Cancer patients reported emotional stress with severe symptoms (38.7% vs. 24.3% in noncancer patients; p = 0.001) and were less likely to have clinical frailty (13.3% vs. 43.9%; p < 0.001). Our study confirms that many patients face the last few months of life with comorbidities or extreme frailty. This study contributes to increasing the general knowledge on palliative care needs in a high-income country.

Download Full-text

Identification of Patient-Reported Outcome Phenotypes Among Oncology Patients With Palliative Care Needs

JCO Oncology Practice ◽

10.1200/op.20.00849 ◽

2021 ◽

pp. OP.20.00849

Author(s):

Tara L. Kaufmann ◽

Kelly D. Getz ◽

Jesse Y. Hsu ◽

Antonia V. Bennett ◽

Samuel U. Takvorian ◽

...

Keyword(s):

Palliative Care ◽

Latent Profile Analysis ◽

Clinical Care ◽

Patient Reported Outcome ◽

Assessment System ◽

Moderate Pain ◽

Care Needs ◽

Oncology Patients ◽

Patient Reported ◽

Palliative Care Needs

PURPOSE: Despite evidence-based guidelines recommending early palliative care, it remains unclear how to identify and refer oncology patients, particularly in settings with constrained access to palliative care. We hypothesize that patient-reported outcome (PRO) data can be used to characterize patients with palliative care needs. To determine if PRO data can identify latent phenotypes that characterize indications for specialty palliative care referral. METHODS: We conducted a retrospective study of self-reported symptoms on the Edmonton Symptom Assessment System collected from solid tumor oncology patients (n = 745) referred to outpatient palliative care. Data were collected as part of routine clinical care from October 2012 to March 2018 at eight community and academic sites. We applied latent profile analysis to identify PRO phenotypes and examined the association of phenotypes with clinical and demographic characteristics using multinomial logistic regression. RESULTS: We identified four PRO phenotypes: (1) Low Symptoms (n = 295, 39.6%), (2) Moderate Pain/Fatigue + Mood (n = 180, 24.2%), (3) Moderate Pain/Fatigue + Appetite + Dyspnea (n = 201, 27.0%), and (4) High Symptoms (n = 69, 9.3%). In a secondary analysis of 421 patients, we found that two brief items assessing social and existential needs aligned with higher severity symptom and psychological distress phenotypes. CONCLUSION: Oncology patients referred to outpatient palliative care in a real-world setting can be differentiated into clinically meaningful phenotypes using brief, routinely collected PRO measures. Latent modeling provides a mechanism to use patient-reported data on a population level to identify distinct subgroups of patients with unmet palliative needs.

Download Full-text

A systematic review of classifications systems to determine complexity of patient care needs in palliative care

Palliative Medicine ◽

10.1177/0269216321996983 ◽

2021 ◽

pp. 026921632199698

Author(s):

Matthew Grant ◽

Everlien de Graaf ◽

Saskia Teunissen

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Patient Care ◽

Clinical Care ◽

Health Care Team ◽

Service Planning ◽

Classification Systems ◽

Care Needs ◽

The Right ◽

Palliative Care Needs

Background: Providing the right care for each individual patient is a key element of quality palliative care. Complexity is a relatively new concept, defined as the nature of patients’ situations and the extent of resulting needs. Classifying patients according to the complexity of their care needs can guide integration of services, anticipatory discussions, health service planning, resource management and determination of needs for specialist or general palliative care. However, there is no consistent approach to interpreting and classifying complexity of patient needs. Aim: The aim of this article is to identify and describe classification systems for complexity of patient care needs in palliative care. Design: Narrative systematic review (PROSPERO registration number CRD42020182102). Data sources: MEDLINE, Embase, CINAHL and PsychINFO databases were searched without time limitations. Articles were included that described classification systems for complexity of care requirements in populations with palliative care needs. Results: In total, 4301 records were screened, with nine articles identified reporting the use of patient classification systems in populations with palliative care needs. These articles included the use of six classification systems: HexCom, Perroca Scale, AN-SNAP, Hui Major Criteria, IDC-Pal and PALCOM. These systems were heterogenous in the manner they determined complexity of care needs. The HexCom and IDC-Pal systems contained items that covered all domains of complexity as described by Hodiamont; personal, social support, health care team and environment. Conclusion: Although six classification systems have been developed, they access differing aspects of care needs and their application has been limited. The HexCOM and IDC-Pal systems offer the broadest determinations of complexity from an individual perspective. Further research is needed to apply these systems to populations external to those in which they were developed, and to appreciate how they may integrate with, and impact, clinical care.

Download Full-text

Pilot randomized trial of a transdisciplinary geriatric intervention for older adults with cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.11549 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 11549-11549

Author(s):

Paul Kay ◽

Areej El-Jawahri ◽

Charn-Xin Fuh ◽

Brandon Temel ◽

Sophia Landay ◽

...

Keyword(s):

Older Adults ◽

Palliative Care ◽

Usual Care ◽

Symptom Burden ◽

Symptom Assessment ◽

Assessment System ◽

Care Needs ◽

Care Intervention ◽

Geriatric Intervention ◽

Palliative Care Needs

11549 Background: Oncologists often struggle with managing the unique care needs of older adults with cancer. We sought to determine the feasibility of delivering a transdisciplinary geriatric intervention designed to address the geriatric (physical function & comorbidity) and palliative care (symptoms & prognostic understanding) needs of older adults with cancer. Methods: We randomly assigned patients age ≥65 with newly diagnosed incurable gastrointestinal (GI) or lung cancer to receive a transdisciplinary geriatric intervention or usual care. Intervention patients received two visits with a geriatrician who was trained to address patients’ palliative care needs in addition to conducting a geriatric assessment. We defined the intervention as feasible if > 70% of patients enrolled in the study and > 75% completed study visits and surveys. At baseline and week 12, we assessed patients’ quality of life (QOL, Functional Assessment of Cancer Therapy General), symptoms (Edmonton Symptom Assessment System), and communication confidence (Perceived Efficacy in Patient Physician Interactions). As this was a pilot study, we calculated mean change scores in outcomes and estimated intervention effect sizes (ES). Results: From 2/2017-6/2018, we randomized 62 patients (55.9% enrollment rate [most common reason for refusal was feeling too ill]; median age = 72.3 [range 65.2-91.8]; 45.2% female; cancer types: 56.5% GI, 43.5% lung). Among intervention patients, 82.1% attended the first visit and 76.2% attended both. Overall, 77.8% completed all study surveys. Compared to usual care, intervention patients had less decrement in QOL scores (-0.77 vs -3.84, ES = .21), greater reduction in the number of moderate/severe symptoms (-0.69 vs +1.04, ES = .58), and more improvement in communication confidence (+1.06 vs -0.80, ES = .38). Conclusions: In this trial of older adults with advanced cancer, more than half enrolled in the study and over 75% of those who enrolled completed all study visits and surveys. Our effect size estimates suggest that a transdisciplinary intervention targeting patients’ geriatric and palliative care needs may be a promising approach to improve patients’ QOL, symptom burden, and communication confidence. Clinical trial information: NCT02868112.

Download Full-text

The “ARIANNA” Project: An Observational Study on a Model of Early Identification of Patients with Palliative Care Needs through the Integration between Primary Care and Italian Home Palliative Care Units

Journal of Palliative Medicine ◽

10.1089/jpm.2017.0404 ◽

2018 ◽

Vol 21 (5) ◽

pp. 631-637 ◽

Cited By ~ 7

Author(s):

Gianlorenzo Scaccabarozzi ◽

Emanuele Amodio ◽

Giacomo Pellegrini ◽

Fabrizio Limonta ◽

Pierangelo Lora Aprile ◽

...

Keyword(s):

Primary Care ◽

Palliative Care ◽

Observational Study ◽

Early Identification ◽

Care Needs ◽

Palliative Care Units ◽

Palliative Care Needs

Download Full-text

The impact of routine ESAS use on receiving palliative care services: Results of a population-based retrospective matched cohort analysis.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.30_suppl.191 ◽

2018 ◽

Vol 36 (30_suppl) ◽

pp. 191-191 ◽

Cited By ~ 3

Author(s):

Lisa Catherine Barbera ◽

Rinku Sutradhar ◽

Craig Earle ◽

Nicole Mittmann ◽

Hsien Seow ◽

...

Keyword(s):

Palliative Care ◽

Cancer Patients ◽

Clinical Care ◽

Symptom Assessment ◽

Assessment System ◽

Matched Cohort ◽

Risk Of Death ◽

Care Services ◽

Palliative Care Services ◽

The Impact

191 Background: In 2007 Cancer Care Ontario began standardized symptom assessment as part of routine clinical care using the Edmonton Symptom Assessment System (ESAS). The purpose of this project was to evaluate the impact of this program on referrals to palliative care. We hypothesized that patients exposed to ESAS would be more likely to be referred. Methods: A retrospective matched cohort study was conducted to examine the impact of ESAS screening on the initiation of palliative care services provided by physician or homecare nurse among newly diagnosed cancer patients in Ontario, Canada. The study included all adult patients who were diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using four hard matched variables and propensity-score matching with 14 variables, cancer patients exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or the end of study at Mar 31, 2017. Results: The final cohort consisted of 204,688 matched patients with no prior palliative care consult. The pairs were well matched. The probability of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared to those who were not (20.6% vs. 15.2%, p < .0001). The risk of death without receipt of palliative care within the same period was low in both groups. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04-1.08). Conclusions: Cancer patients who completed ESAS were more likely to initiate palliative care services than those who didn’t. ESAS screening may help identify patients who would benefit from a palliative approach to care earlier in their clinical course.

Download Full-text

Palliative Care in the Intensive Care Unit

Hospice and Palliative Medicine and Supportive Care Flashcards ◽

10.1093/med/9780190633066.003.0040 ◽

2018 ◽

Author(s):

Margaret L. Isaac ◽

J. Randall Curtis

Keyword(s):

Intensive Care Unit ◽

Palliative Care ◽

Intensive Care ◽

Information Quality ◽

Life Support ◽

Symptom Assessment ◽

Care Needs ◽

Prognostic Information ◽

Screening Criteria ◽

Palliative Care Needs

Palliative care is increasingly recognized as an important component of care for all critically ill patients and should include both improving the primary palliative care skills of all clinicians working in the intensive care unit (ICU) as well as incorporating palliative care specialists for patients and families with unmet palliative care needs. This chapter highlights the key issues related to palliative care in ICU and evidence-based strategies to manage these issues. Topics covered include screening criteria to help identify patients with a high likelihood of unmet palliative care needs, withdrawal of life support (checklist and communication), providing prognostic information, quality indicators for end-of-life care in the ICU, and symptom assessment and management in the ICU.

Download Full-text

The Importance of Early Identifications of Palliative Care Needs in Emergency Wards

10.26226/morressier.5c76c8bde2ea5a7237612860 ◽

2019 ◽

Author(s):

Mia Grillfors Mård

Keyword(s):

Palliative Care ◽

Care Needs ◽

Palliative Care Needs

Download Full-text

What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

BMC Palliative Care ◽

10.1186/s12904-020-00700-3 ◽

2021 ◽

Vol 20 (1) ◽

Cited By ~ 1

Author(s):

Anne M. Finucane ◽

Connie Swenson ◽

John I. MacArtney ◽

Rachel Perry ◽

Hazel Lamberton ◽

...

Keyword(s):

Palliative Care ◽

Focus Groups ◽

Healthcare Professionals ◽

Psychological Needs ◽

Care Providers ◽

Specialist Palliative Care ◽

Care Needs ◽

Complex Needs ◽

Sequential Explanatory ◽

Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

Download Full-text