Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.

/pdf/palliative-care-needs-assessment-and-measurement-tools-used-1n3vrfte9l.pdf

Palliative care needs-assessment and measurement tools used in patients with heart failure: a systematic mixed-studies review with narrative synthesis.

Background:Despite evidence demonstrating the utility of using Person-Centred Outcome Measures within palliative care settings, implementing them into routine practice is challenging. Most research...

https://journals.sagepub.com/doi/pdf/10.1177/0269216320972049

Implementing person-centred outcome measures in palliative care: An exploratory qualitative study using Normalisation Process Theory to understand processes and context:

AimThe aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart fai...

Utility of the integrated palliative care outcome scale (IPOS): a cross-sectional study in hospitalised patients with heart failure

Purpose Our purpose was to report outcomes of a novel palliative radiation therapy protocol that omits computed tomography simulation and prospectively collects electronic patient-reported outcomes (ePROs). Methods and Materials Patients receiving extracranial, nonstereotactic, linear accelerator-based palliative radiation therapy who met inclusion criteria (no mask-based immobilization and a diagnostic computed tomography within 4 weeks) were eligible. Global pain was scored with the 11-point numerical pain rating scale (NPRS). Patients were coded as having osseous or soft tissue metastases and no/mild versus severe baseline pain (NPRS ≥ 5). Pain response at 4 weeks was measured according to the international consensus (no analgesia adjustment). Transition to ePRO questionnaires was completed in 3 phases. Initially, pain assessments were collected on paper for 11 months, then pilot ePROs for 1 month and then, after adjustments, revised ePROs from 1 year onwards. ePRO feasibility criteria were established with reference to the paper-based process and published evidence. Results Between May 2018 and November 2019, 542 consecutive patients were screened, of whom 163 were eligible (30%), and 160 patients were successfully treated. The proportion of patients eligible for the study improved from approximately 20% to 50% by study end. Routine care pain monitoring via ePROs was feasible. One hundred twenty-seven patients had a baseline NPRS recording. Ninety-five patients had osseous (61% severe pain) and 32 had soft tissue (25% severe pain) metastases. Eighty-four patients (66%) were assessable for pain response at 4 weeks. In the 41 patients with severe osseous pain, overall and complete pain response was 78% and 22%, respectively. Conclusions By study completion, 50% of patients receiving palliative extracranial radiation therapy avoided simulation, streamlining the treatment process and maximizing patient convenience. Pain response for patients with severe pain from osseous lesions was equivalent to published evidence.

Introducing Computed Tomography Simulation-Free and Electronic Patient-Reported Outcomes-Monitored Palliative Radiation Therapy into Routine Care: Clinical Outcomes and Implementation Experience.

Symptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients’ main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments. Within 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT). Between 01.01.2016–30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) whereof 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain (ƙ = 0.438) and dyspnea (ƙ = 0.503), fair for other physical (ƙ = 0.297 to 0.394) and poor for psychological symptoms (ƙ = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care. Admissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.

/pdf/systematic-symptom-and-problem-assessment-at-admission-to-44b61qcva4.pdf

Systematic symptom and problem assessment at admission to the palliative care ward – perspectives and prognostic impacts

Outcome measurement is becoming increasingly important in palliative care both in research as well as clinical care. Regular ongoing assessments in palliative care clinical practice have the potential to enable monitoring of the patient's situation, assess the effectiveness of interventions, assess symptoms accurately and focus on patients' priorities. Implementing routine outcome measurement into clinical practice remains a challenge. Therefore, the aim of this article is to describe the process of implementing routine outcome measurement into daily clinical work in a university palliative care unit. According to the recommendations of Antunes, the following steps were used to implement routine outcome measurement in clinical care in a university palliative care unit. (I) Selection of outcomes of interest by the clinical leads and head of department: most prevalent symptoms; psychological, practical and spiritual concerns, functional status, carer burden; (II) selection of outcome measures: Integrated Palliative Care Outcome Scale (IPOS), phase of illness, Australian Karnofsky Performance Status; (III) educational component about the measure and how to use results: team meetings and team retreat with introduction of outcome measurement in palliative care, chosen measures and role plays with use of measures; (IV) selection of responsible consultant on the ward as coordinator and facilitator for outcome measurement; (V) who applies the measure and its periodicity. Implementation of outcome measurement in clinical routine is feasible following a structured process. Nevertheless, it is a time consuming and long-lasting process which needs continuous attention. However, the benefits outweigh the burden of implementation and it is a task worthwhile undertaking.

Starting from scratch: implementing outcome measurement in clinical practice

Breathlessness is a common and distressing symptom in advanced stages of malignant and non-malignant disease [1–4]. Breathlessness is highly prevalent, occurring in up to 80% of patients with advanced cancer, in around 56–98% of patients with chronic obstructive pulmonary disease (COPD) and in up to 90% of patients with chronic heart failure (CHF) [5, 6]. Patients with chronic breathlessness resulting from advanced disease report high symptom burden, palliative care needs [7–9] and suffer from anxiety and depression [10]. Negative consequences on health and quality of life (QoL) have been shown, e.g. for COPD patients [11]. Breathlessness is one of the most common reasons for emergency department visits and hospital admissions in cancer patients [12–14].

Footnotes 

This manuscript has recently been accepted for publication in the European Respiratory Journal . It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article.

Conflict of interest: Dr. Schunk reports grants from BMBF (German Federal Ministry of Education and Research), during the conduct of the study;.

Conflict of interest: Dr. Le has nothing to disclose.

Conflict of interest: Dr. Syunyaeva has nothing to disclose.

Conflict of interest: Dr. Haberland has nothing to disclose.

Conflict of interest: Dr. Dr. med. Tanzler has nothing to disclose.

Conflict of interest: Dr. Mansmann has nothing to disclose.

Conflict of interest: Dr. Schwarzkopf has nothing to disclose.

Conflict of interest: Dr. Seidl has nothing to disclose.

Conflict of interest: Dr. Streitwieser has nothing to disclose.

Conflict of interest: M. Hofmann has nothing to disclose.

Conflict of interest: Dr. Mueller has nothing to disclose.

Conflict of interest: Dr. Weis has nothing to disclose.

Conflict of interest: Dr. Morawietz has nothing to disclose.

Conflict of interest: Dr. Rehfuess has nothing to disclose.

Conflict of interest: Dr. Huber reports grants from German Ministry of Education and Research, during the conduct of the study;.

Conflict of interest: Dr. Berger reports grants from Federal Ministry of Education and Research Germany (BMBF), during the conduct of the study;.

Conflict of interest: Dr. Bausewein reports grants from German Ministry of Research and Education, during the conduct of the study;.

Effectiveness of a specialised breathlessness service for patients with advanced disease in Germany: a pragmatic fast-track randomised controlled trial (BreathEase).

Symptomkontrolle und Krankheitsbewältigung aus Sicht von Patienten und Angehöriger mit therapierefraktärer Atemnot

Abstract Background The COVID-19 pandemic impacts on working routines and workload of palliative care (PC) teams but information is lacking how resource use and associated hospital costs for PC changed at patient-level during the pandemic. We aim to describe differences in patient characteristics, care processes and resource use in specialist PC (PC unit and PC advisory team) in a university hospital before and during the first pandemic year. Methods Retrospective, cross-sectional study using routine data of all patients cared for in a PC unit and a PC advisory team during 10–12/2019 and 10–12/2020. Data included patient characteristics (age, sex, cancer/non-cancer, symptom/problem burden using Integrated Palliative Care Outcome Scale (IPOS)), information on care episode, and labour time calculated in care minutes. Cost calculation with combined top-down bottom-up approach with hospital’s cost data from 2019. Descriptive statistics and comparisons between groups using parametric and non-parametric tests. Results Inclusion of 55/76 patient episodes in 2019/2020 from the PC unit and 135/120 episodes from the PC advisory team, respectively. IPOS scores were lower in 2020 (PCU: 2.0 points; PC advisory team: 3.0 points). The number of completed assessments differed considerably between years (PCU: episode beginning 30.9%/54.0% in 2019/2020; PC advisory team: 47.4%/40.0%). Care episodes were by one day shorter in 2020 in the PC advisory team. Only slight non-significant differences were observed regarding total minutes/day and patient (PCU: 150.0/141.1 min., PC advisory team: 54.2/66.9 min.). Staff minutes showed a significant decrease in minutes spent in direct contact with relatives (PCU: 13.9/7.3 min/day in 2019/2020, PC advisory team: 5.0/3.5 min/day). Costs per patient/day decreased significantly in 2020 compared to 2019 on the PCU (1075 Euro/944 Euro for 2019/2020) and increased significantly for the PC advisory team (161 Euro/200 Euro for 2019/2020). Overhead costs accounted for more than two thirds of total costs. Direct patient cost differed only slightly (PCU: 134.7 Euro/131.1 Euro in 2019/2020, PC advisory team: 54.4 Euro/57.3 Euro). Conclusions The pandemic partially impacted on daily work routines, especially on time spent with relatives and palliative care problem assessments. Care processes and quality of care might vary and have different outcomes during a crisis such as the COVID-19 pandemic. Direct costs per patient/day were comparable, regardless of the pandemic. 

/pdf/the-impact-of-the-covid-19-pandemic-on-processes-resource-1lj2trmf.pdf

The impact of the COVID-19 pandemic on processes, resource use and cost in palliative care

https://bmcpalliatcare.biomedcentral.com/counter/pdf/10.1186/s12904-023-01178-5

S Tänzler

Papers

Starting from scratch: implementing outcome measurement in clinical practice

Effectiveness of a specialised breathlessness service for patients with advanced disease in Germany: a pragmatic fast-track randomised controlled trial (BreathEase).

Symptomkontrolle und Krankheitsbewältigung aus Sicht von Patienten und Angehöriger mit therapierefraktärer Atemnot

The impact of the COVID-19 pandemic on processes, resource use and cost in palliative care

Correction to: The impact of the COVID-19 pandemic on processes, resource use and cost in palliative care