PEACEを用いた緩和ケア研修会受講による臨床での取り組みかたの変化について

Objective The early integration of palliative care into standard cancer treatment has become a global standard. The Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) has been conducted in Japan, and previous studies have reported that the PEACE workshop was able to improve various palliative care skills of participants. However, whether or not the effects of the program are long-lasting and if the program consequently changed physicians’ practice with regard to lung cancer patients have been unclear. Methods Web-based surveys, including the palliative care knowledge test (PEACE-Q), the Palliative Care self-reported Practice Scale (PCPS), and the Palliative Care Difficulties Scale (PCDS), were conducted among lung cancer physicians in Japan. The differences in the survey results between participants and non-participants of the PEACE workshop were examined. Results Among 923 respondents (455 respiratory physicians, 345 pulmonary surgeons, and 123 others), 519 had participated in the PEACE workshop. The total PEACE-Q score was significantly higher in the PEACE workshop participants than in non-participants (28.0 versus 24.5, p＜0.0001). The score was significantly higher in respiratory physicians than in pulmonary surgeons (27.4 versus 25.5). The total PCPS and PCDS scores were also significantly better in workshop participants than in non-participants (71.8 versus 67.1 and 34.3 versus 36.9, respectively), although some domains of PCDS were similar between the groups. Conclusion The PEACE program improved the knowledge and practices with regard to palliative care and resolved difficulties associated therewith among lung cancer physicians. In regions where palliative care specialists are insufficient, such educational programs may be effective.

In Japan, a nationwide palliative care education program for primary palliative care (the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education: PEACE) was established in 2008. Effective delivery of such programs relies on adequate evaluations of program efficacy; however, such an instrument does not exist. This study aimed to develop and validate a measurement tool to quantify knowledge level of physicians about broader areas of palliative care, by which the effect of an education program could be measured. We conducted a cross-sectional, anonymous, self-administered questionnaire survey with a group of 801 conveniently sampled physicians in October 2010. To examine the test-retest reliability of items and domains, the questionnaire was reissued two weeks after the first survey was completed. This study used psychometric methods, including item response theory, intraclass correlation coefficients, and known-group validity. The response rate was 54% (n=434). We included 33 items across the following 9 domains: (1) philosophy of palliative care, (2) cancer pain, (3) side effects of opioids, (4) dyspnea, (5) nausea and vomiting, (6) psychological distress, (7) delirium, (8) communication regarding palliative care, and (9) community-based palliative care. For these items, the intraclass correlation was 0.84 and the Kuder-Richardson Formula 20 (KR-20) test of internal consistency was 0.87. There was a significant difference in the scores between palliative care specialists and other physicians. We successfully validated a newly developed palliative care knowledge questionnaire to evaluate PEACE effectiveness (PEACE-Q). The PEACE-Q could be useful for evaluating both palliative care knowledge among physicians and education programs in primary palliative care.

Background:In clinical practice, several strategies and pharmacological options are available to treat neuropsychiatric symptoms of Huntington disease (HD). However, there is currently insufficient data for evidence-based guidelines on the management of these common symptoms.Objective:We aimed to develop expert-based recommendations regarding the management of agitation, anxiety, apathy, psychosis, and sleep disorders.Methods:Guideline development was based on a modified Institute of Medicine guideline process that accounted for a lack of evidence base. An international committee of 11 multidisciplinary experts proposed a series of statements regarding the description and management of each symptom. Statement assessment and validation was performed using a web-based survey tool and 84 international HD experts (neurologists and psychiatrists) who assessed the statements and indicated their level of agreement.Results:High-level agreement (≥85% experts strongly agreed or agreed) was reached for 107 of the 110 statements that have been incorporated into the expert-based clinical recommendations presented herein.Conclusions:Clinical statements to guide the routine management of agitation, anxiety, apathy, psychosis, and sleep disorders in HD have been developed. Although not specifically tested in the HD population, clinical experience has shown that most of the neuropsychiatric symptoms discussed, when considered in isolation are treatable using pharmacologic and non-pharmacologic strategies developed for use in other populations. However, the management of neuropsychiatric symptoms in HD can be complex because neuropsychiatric symptoms often co-exist and treatment decisions should be adapted to cover all symptoms while limiting polypharmacy.

Palliative care (PC) is holistic care that encompasses prevention, assessment, and treatment of symptoms, and addresses the psychological, social, and spiritual problems of ill people and their relatives with the goal of improving quality of life and, finally, dying. It is not an alternative but a supplement to curative treatment, making symptom alleviation and quality of life equally important goals for management and care as healing along the whole disease trajectory. The SENSE model describes elements of PC: Symptom management, dEcision-making, Networking, Support, and End-of-life care. People with heart disease, particularly those with advanced heart failure (HF), benefit from PC care. Pain, breathlessness, tiredness, depression, anxiety, and dry mouth are frequent symptoms among people with HF and could be effectively alleviated with PC. Many of these symptoms, almost constantly present in HF patients, are usually not specifically targeted by medical interventions. Preparedness for anticipatory death improves quality of life during dying for patients and their relatives, and improves satisfaction with care. The greatest challenge still lies in recognizing unmet PC needs and involving a PC team appropriately early, not simply in the very last hours of life. A number of specific issues, such as the modification of implantable cardioverter defibrillator activity or withdrawal of ventricular assist device support, can be addressed by preparing advance directives leading to protecting patients from unwished, usually futile, therapies when they become imminently dying and/or incompetent for decision-making. PC also gives support to cardiology teams in difficult communications on end-of-life issues. Modern PC manages or prevents suffering in people with advanced diseases, independent of diagnosis and prognosis and care for their relatives. It can be provided additionally to disease-specific management as a parallel care, or sometimes as the main care pathway in people close to death as end-of-life care. Parallel PC care should be needs driven; end-of-life care can additionally be prognosis driven. In the majority of cardiological patients PC can/should be delivered by the cardio team that has been treating the person to date and who applies the general PC rules (symptom and distress assessment and management). The PC specialist should ensure consultations in case of difficult/resistant problems, and take the lead in treatment only rarely, if needed. PC acknowledges four dimensions influencing a person’s quality of life: physical, psychological/emotional, spiritual, and social. Each of them needs to be addressed effectively which may require the involvement of a multidisciplinary team. A PC team can provide important support to the treatment team in analysing/solving complex management-related ethical issues.

Understanding and Addressing the Informational Needs of Radiation Therapists Concerning the Management of Anxiety and Depression in Patients Receiving Radiation Therapy Treatment

United States: Overview of Cancer Pain and Palliative Care

Effect of Education on Symptom Management and Control in Cancer Patients Receiving Palliative Care

295 Background: Patients with advanced cancer often experience frequent and prolonged hospitalizations, and the transition from hospital to home represents a critical period for these individuals, as they prefer to maximize time at home and avoid readmissions. We sought to demonstrate the feasibility and acceptability of a Supportive Oncology Care at Home intervention to address the post-discharge needs of recently hospitalized patients with advanced cancer. Methods: We conducted a single-arm pilot trial at Massachusetts General Hospital (MGH). We enrolled English-speaking adults with advanced solid tumors experiencing their second or later unplanned hospitalization, who were being discharged home without hospice services and residing within a 50 mile radius of MGH. The three-week intervention consisted of: 1) hospital in the home care model for proactive symptom assessment and management, including clinician visits to assess patients, draw labs, administer intravenous medications and hydration, and ensure optimal symptom management; 2) remote monitoring of daily patient-reported symptoms, vital signs, and body weight; and 3) structured communication with the oncology team. The primary endpoint of the study was feasibility, defined as ≥60% of approached and eligible patients enrolling and ≥60% of participants completing daily symptom assessments. After intervention completion, patients rated the helpfulness and convenience of the intervention and symptom monitoring technology. Results: From 12/2021-6/2022, we enrolled 40 out of 66 approached patients (60.6% enrollment rate). Enrolled patients (median age = 58.5 years, 50% female, 75% white, 68% married, 50% gastrointestinal cancers) completed 93.8% of daily symptom assessments. 12 patients (30%) did not complete the intervention due to withdrawal (5), hospice transfer (4), or death (3). Among enrolled patients, 20.0% were enrolled in hospice and 15.4% died at 30 days after hospital discharge. In exit interviews, 100% and 75% rated the intervention and symptom monitoring as helpful, respectively. 83% of patients found the in-home monitoring technology convenient. Conclusions: We found that a three-week Supportive Oncology Care at Home intervention is a feasible approach to providing post-discharge care for high acuity, seriously ill hospitalized patients with advanced cancer. These patients also found the intervention highly acceptable. Future studies will test the efficacy of the intervention for reducing hospital readmissions, improving symptom management and quality of life, and increasing days spent at home near the end of life. Clinical trial information: NCT04637035.

BackgroundPatients receiving chemotherapy require ongoing symptom monitoring and management to optimize their outcomes. In recent years, digital remote monitoring interventions have emerged to provide enhanced cancer care delivery experiences to patients and clinicians. However, patient and clinician experiential evaluations of these technologies are rare. Therefore, we explored user experiences and perceptions of one such intervention—Advanced Symptom Management System (ASyMS)—after its scaled deployment in the context of the Electronic Symptom Management System Remote Technology (eSMART) trial. The eSMART trial was a large, multicenter randomized controlled trial to evaluate the efficacy of ASyMS in 12 clinical sites in 5 European countries.ObjectiveIn this qualitative study, both patients’ and clinicians’ experiences of using ASyMS for up to 6 cycles of chemotherapy were explored to understand the impact of ASyMS on patients’ experiences, clinical practice, and supportive care delivery.MethodsFor this analysis, individual, semistructured, one-to-one interviews with 29 patients with breast, colorectal, and hematological cancers and 18 clinicians from Austria, Greece, Ireland, Norway, and the United Kingdom were conducted. Interviews focused on patients’ and clinicians’ experiences of using ASyMS, care organization and changes in practice following the introduction of ASyMS, perceived changes in care associated with the use of ASyMS, and its potential for future integration into routine chemotherapy care pathways.ResultsThematic analysis identified several themes that describe patients’ and clinicians’ experiences using ASyMS. One central orienting theme—ASyMS as a facilitator of change—was supported by 5 key themes associated with human and technology monitoring: reassurance, enhanced communications and relationships, knowing what is “normal” and what is to be expected, enhancing cancer care experiences, and informing future cancer care.ConclusionsThis study is the first to evaluate both patients’ and clinicians’ experiences of using a digital health intervention to remotely monitor chemotherapy symptoms across 5 countries. Experiences with ASyMS were positive from both patients’ and clinicians’ perspectives, although some improvements to support the wider-scale rollout and sustained implementation were identified. Overall, this study demonstrates that real-time remote monitoring systems can help patients feel more reassured during their chemotherapy treatments and can help clinicians provide the right care, at the right time, and in the right place.Trial RegistrationClinicalTrials.gov NCT02356081; https://clinicaltrials.gov/study/NCT02356081International Registered Report Identifier (IRRID)RR2-10.1136/bmjopen-2016-015016

Public Awareness and Perceptions of Palliative and Comfort Care

Abstracts from theCenter to Advance Palliative Care National Seminar Pathways to Quality Palliative Care<i>November 13–15, 2014</i><i>Orlando, Florida</i>

Guidelines by the European Federation of Neurological Societies (EFNS) subcommittee for Continuing Medical Education (CME) – modification 2003

IntroductionIdiopathic multicentric Castleman disease (iMCD) is a rare, chronic, debilitating lymphoproliferative disorder where the mainstay of treatment is symptom management. Our recent international patient survey showed that patients with iMCD have a high symptom burden that has a significant negative patient-reported impact on several aspects of daily life. As part of our ongoing work towards the development of an iMCD symptom burden scale, assessing the survey’s psychometric properties is a critical step in understanding its adequacy, relevance, and usefulness. As iMCD is a rare disease, there are challenges to conducting such psychometric analyses which we describe.MethodsAs part of the exploratory psychometric analysis, three a priori hypothesis sets (HS) were generated by interviewing an iMCD-experienced clinician, a patient, and a caregiver to explore the iMCD patient survey’s internal construct validity, given no gold standard iMCD measure exists for external construct validation. HS-1 hypothesized that a convergent or discriminant relationship exists with the patients’ self-assessment of symptom effect on daily life between two potentially related or unrelated symptoms, respectively. HS-2 hypothesized that having a greater number of symptoms has a positive convergent relationship with the patients’ assessment of symptoms’ effect on daily life. Finally, HS-3 hypothesized that patients receiving treatment versus no treatment was associated with patients reporting less effect of symptom burden on their daily life. Spearman’s rank absolute correlation strength (ACS) was used for HS-1 and HS-2 (convergent relationship, ACS ≥ 0.3 and p value < 0.05; divergent relationship, ACS < 0.3), and Cohen’s d to quantify standardized absolute effect sizes (AES) for HS-3 (AES ≥ 0.5 and p value < 0.05).ResultsOur analyses partially supported HS-1. None of the three positive convergent relationships were supported. Of the six discriminant relationships, only dizziness with impaired cognitive function and tiredness with dizziness were supported. HS-2 analyses showed there was convergent validity between the number of symptoms and their effect on aspects of daily life. HS-3 analyses did not provide evidence to support the hypothesis.ConclusionThese internal psychometric construct analyses provide initial support for the bespoke iMCD patient survey and will guide additional work towards the development of the first iMCD-specific symptom burden scale.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40487-024-00293-4.

Neurologists address diagnosis, modification of disease course and management of symptoms of people with long-term neurological conditions such as Parkinson’s disease, multiple sclerosis, motor neuron disease and sequelae of stroke. Neurorehabilitation specialists focus on management of symptoms and alleviation of activity limitations. Palliative care specialists are involved in end-of-life care of these patients. Guidance and protocols of palliative care services have been directed towards the care of patients with cancer. While it may be possible to extrapolate some of these to people with long-term neurological conditions, there are obvious differences between the two groups. The time course of progressive neurological conditions varies widely between and within the disorders which make timing of initiation of these discussions challenging. Common issues during end-of-life care are when to start discussions about end-of-life care, advanced care planning, management of common symptoms, withdrawal of life-sustaining treatments, support for family and caregivers and when to involve specialist palliative care team. The unique social, economic and cultural aspects of India influence these decisions. End-of-life care cannot be seen in isolation and as such close collaboration between neurology, neurorehabilitation and specialist palliative care is imperative. In this article, we will discuss the end-of-life care of people with long-term neurological condition in India.

56 Background: The goal of the collaborative is to improve the quality and consistency of physical and emotional symptom management across the cancer journey. Objectives are: (a) promote the adoption of electronic symptom assessment using a standardized tool and (b) increase the clinical use of evidence based guidelines to effectively manage patient identified symptoms. Methods: The actions taken for this initiative are to manage cancer symptoms through a patient reported measurement tool; improve the quality of symptom management through the uptake of symptom management guides and algorithms for care; and drive improvement through the adoption of an electronic symptom assessment platform The following aims were established for this work: (1) Aim for symptom screening and assessment (70% of ambulatory cancer clinic patients are screened for symptom severity using ESAS at least once/month) (2) aim for symptom management (evidence from chart audits show intervention as per evidence based guidelines for patients reported symptom scores) (3) aim for patient satisfaction (90% of target population indicates that their health care team took their scores into consideration when developing a care plan) and (4) aim for evidence of use (90% of patients state that their doctor or nurse spoke with them about their symptom screen). Results: 60% of cancer patients are screened each month representing over 28,000 people. Six of fourteen cancer regions are above the provincial target of 70%, with some close to 90%. 92% of patients felt ESAS was important to complete to help health care providers know how they are feeling. Conclusions: Cancer Care Ontario has been able to drive improvements in symptom management through the implementation of system wide electronic symptom assessment. For other jurisdictions interested in adopting this approach, the following areas are critical for success. (a.) Leadership at all levels of the system; (b.) clinical tools at the point of care; (c) engagement of patients in the design of care; (d) communications support to spread information to all stakeholders; and (e) using to data to drive performance improvement and accountability.