Identifying the Unmet Needs of People Living With Amyotrophic Lateral Sclerosis: A National Survey to Inform Interdisciplinary Palliative Care.

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy.

Trends in Specialty Palliative Care Service Utilization and In-Hospital Outcomes for Patients With Amyotrophic Lateral Sclerosis.

Background: Hospitalized people with amyotrophic lateral sclerosis (ALS) may benefit from specialty palliative care services (sPCS). Objective: To describe access to in-hospital sPCS for people with ALS (pALS). Methods: We compared years 2010-2011 to 2018-2019, and conducted trend analyses of sPCS from 2010 to 2019 stratified by race. Results: Of 103,193 pALS admitted during the study period, 13,885 (13.4%) received sPCS. Rates of sPCS increased over time (2010-2011: 8.9% vs. 2018-2019: 16.6%; p < 0.01). From 2010 to 2019, there was an increase in sPCS (p-trend<0.01) for all studied racial groups. Conclusions: Access to palliative care has increased over time for pALS admitted to hospitals in the United States.

Quality-of-life assessment instruments used across ALS clinics.

INTRODUCTION/AIMS: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. METHODS: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS members. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. RESULTS: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. DISCUSSION: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.

Neuroprognostication for Patients with Amyotrophic Lateral Sclerosis: An Updated, Evidence-Based Review.

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive neurodegenerative disorder that presents and progresses in various ways, making prognostication difficult. Several paradigms exist for providers to elucidate prognosis in a way that addresses not only the amount of time a patient has to live, but also a patient's quality of their life moving forward. Prognostication, with regard to both survivability and quality of life, is impacted by several features that include, but are not limited to, patient demographics, clinical features on presentation, and over time, access to therapy, and access to multidisciplinary clinics. An understanding of the impact that these features have on the life of a patient with ALS can help providers to develop a better and more personalized approach for patients related to their clinical prognosis after a diagnosis is made. The ultimate goal of prognostication is to empower patients with ALS to take control and make decisions with their care teams to ensure that their goals are addressed and met.

Palliative Care Education in US Physical Medicine and Rehabilitation Residency Programs: Current Practices, Perceived Needs, and Barriers.

Background: Physical medicine and rehabilitation (PM&R) clinicians commonly care for patients with serious illness/injury and would benefit from primary palliative care (PC) training. Objective: To assess current practices, attitudes, and barriers toward PC education among U.S. PM&R residencies. Design: This is a cross-sectional study utilizing an electronic 23-question survey. Setting/Subjects: Subjects were program leaders from U.S. PM&R residency programs. Results: Twenty-one programs responded (23% response). Only 14 (67%) offered PC education through lectures, elective rotations, or self-directed reading. Pain management, communication, and nonpain symptom management were identified as the most important PC domains for residents. Nineteen respondents (91%) felt residents would benefit from more PC education, but only five (24%) reported undergoing curricular change. Lack of faculty availability/expertise and teaching time were the most endorsed barriers. Conclusion: PC education is heterogeneous across PM&R programs despite its perceived value. PC and PM&R educators can collaborate to build faculty expertise and integrate PC principles into existing curricula.

Top Ten Tips Palliative Care Clinicians Should Know about Multiple Sclerosis.

Multiple sclerosis (MS) is a chronic, immune-mediated, neurodegenerative condition of the central nervous system, with distinct challenges due to its heterogeneous presentation, prognostic uncertainty, and variable clinical course of neurological and non-neurological symptoms and disability. Although there have been significant advances in management of MS, many patients experience disability progression. Despite MS being a frequent cause of neurological disability, particularly in young persons, involvement of palliative care physicians in the care of patients with MS has been limited. This article provides ten tips for palliative clinicians for caring for patients with MS and their care partners.

The use of natural language processing in palliative care research: A scoping review.

BACKGROUND: Natural language processing has been increasingly used in palliative care research over the last 5 years for its versatility and accuracy. AIM: To evaluate and characterize natural language processing use in palliative care research, including the most commonly used natural language processing software and computational methods, data sources, trends in natural language processing use over time, and palliative care topics addressed. DESIGN: A scoping review using the framework by Arksey and O'Malley and the updated recommendations proposed by Levac et al. was conducted. SOURCES: PubMed, Web of Science, Embase, Scopus, and IEEE Xplore databases were searched for palliative care studies that utilized natural language processing tools. Data on study characteristics and natural language processing instruments used were collected and relevant palliative care topics were identified. RESULTS: 197 relevant references were identified. Of these, 82 were included after full-text review. Studies were published in 48 different journals from 2007 to 2022. The average sample size was 21,541 (median 435). Thirty-two different natural language processing software and 33 machine-learning methods were identified. Nine main sources for data processing and 15 main palliative care topics across the included studies were identified. The most frequent topic was mortality and prognosis prediction. We also identified a trend where natural language processing was frequently used in analyzing clinical serious illness conversations extracted from audio recordings. CONCLUSIONS: We found 82 papers on palliative care using natural language processing methods for a wide-range of topics and sources of data that could expand the use of this methodology. We encourage researchers to consider incorporating this cutting-edge research methodology in future studies to improve published palliative care data.

Appetite and quality of life in amyotrophic lateral sclerosis: A scoping review.

Loss of appetite is related to undesirable loss of weight in amyotrophic lateral sclerosis (ALS) and affects up to two thirds of people with this disease. Little is known about the instruments used to measure appetite loss, its impact on quality of life (QoL), or strategies used to improve loss of appetite. In this study we aim to characterize the existing literature on the symptom of appetite loss in ALS through a systematic scoping review following the framework by Arksey and O'Malley and PRISMA guidelines. Studies assessing appetite in people with ALS (pALS) published in English and indexed on Web of Science, PubMed, and Scopus databases were included. A total of 156 full references were identified, of which 10 articles met the inclusion criteria and were eligible for data synthesis after screening. Seven unique instruments were used to assess appetite across the included studies, most commonly the Council of Nutrition Appetite Questionnaire. No studies included a subjective assessment of appetite loss. A total of 12 unique potential associated factors across five studies were identified. QoL was measured in seven studies using nine different QoL measurement tools. Few studies measure appetite in pALS and there is no consensus on the assessment tool used. Few studies evaluated the impact of appetite as a symptom on QoL. Furthermore, the heterogeneity of outcomes and risk factors of the existing data limit the clinical application of these findings. Future studies are needed to guide clinical management and interventions for people with ALS and appetite loss.

Top Ten Tips Palliative Care Clinicians Should Know About Disorders of Consciousness: A Focus on Traumatic and Anoxic Brain Injury.

Palliative care (PC) teams commonly encounter patients with disorders of consciousness (DOC) following anoxic or traumatic brain injury (TBI). Primary teams may consult PC to help surrogates in making treatment choices for these patients. PC clinicians must understand the complexity of predicting neurologic outcomes, address clinical nihilism, and appropriately guide surrogates in making decisions that are concordant with patients' goals. The purpose of this article was to provide PC providers with a better understanding of caring for patients with DOC, specifically following anoxic or TBI. Many of the tips acknowledge the uncertainty of DOC and provide strategies to help tackle this dilemma.

Defining Clinical Excellence for Palliative Care Specialists: A Concept Whose Time Has Come.

Experts in the field of palliative care in the United States (U.S.) have defined competence, or "good," mainly for programs, trainees, or providers of primary palliative care. Our interprofessional workgroup of palliative care specialists proposes that setting a standard for clinical excellence, or "great," applicable to palliative care specialists of all professions will elevate the field in the U.S. by providing an aspirational target usable for individual assessment and self-assessment, highlighting the common ground between team roles, and promoting a deeper understanding of teamwork, utilization, and productivity. We call for research that utilizes inclusive methods and broad representation of diverse voices to design a vivid, practical, and evidence-based definition of clinical excellence for palliative care specialists.

Top Ten Tips Palliative Care Clinicians Should Know About Strokes.

Stroke is a common cause of long-term disability and death, which leaves many patients with significant and unique palliative care (PC) needs. Shared decision-making for patients with stroke poses distinct challenges due to the sudden nature of stroke, the uncertainty inherent in prognostication around recovery, and the common necessity of relying on surrogates for decision-making. Patients with stroke suffer from frequently underrecognized symptoms, which PC clinicians should feel comfortable identifying and treating. This article provides 10 tips for palliative clinicians to increase their knowledge and comfort in caring for this important population.

Top Ten Tips Palliative Care Clinicians Should Know About Seizures at the End of Life.

Seizures are physically burdensome and emotionally distressing for patients, families, caregivers, and clinicians. Patients with neurological diseases are at increased risk of having complex, difficult-to-control seizures at the end of life. Palliative care (PC) clinicians asked to provide management of these seizures may not be familiar or comfortable with more complex seizures or epilepsy. A team of neurologists and PC specialists have compiled a list of tips to guide clinicians on how to care for patients having seizures and to support their families/caregivers.

Assessment of feasibility and utility of universal referral to specialty palliative care in a multidisciplinary amyotrophic lateral sclerosis clinic: A cohort study.

INTRODUCTION: Although the value of palliative care integration in multidisciplinary amyotrophic lateral sclerosis (ALS) clinics has been increasingly recognized, limited data are available demonstrating the feasibility and utility of a palliative care specialist embedded in an ALS clinic. The purpose of this study is to describe the feasibility and utility of a universal outpatient referral model for specialty palliative care for patients with amyotrophic lateral sclerosis. METHODS: This is a retrospective cohort study of initial patient visits with a palliative care physician in a multidisciplinary ALS clinic at an academic institution. All patients were referred to an embedded palliative care physician from January to December 2019. RESULTS: Within the study period, 52 of 69 (75%) patients with a confirmed diagnosis of ALS were seen by the palliative care physician. The most common reason patients were not seen by palliative care was a lack of insurance authorization (n = 5). At the visit, 94% of patients discussed at least one advance care planning or goals of care topic. The most common advance care planning topic discussed was code status (40%). The most common goals of care topic discussed was meaning and values (57%). Symptom management was discussed with 40 patients (77%). The most common symptom addressed was pain and/or muscle spasms (33%). DISCUSSION: These data support the feasibility and utility of universal, outpatient palliative care referral for patients with ALS. Further research is necessary to determine the long-term effect on outcomes for this population.

Narrative Approach to Goals of Care Discussions: Adapting the 3-Act Model Training to an Online Format.

CONTEXT: The three-Act Model, a narrative approach to goals of care (GOC) discussions centered on patients' individual stories, has proven to be effective as measured by objective skill improvement among medical trainees. This study describes the adaptation of the in-person curriculum to a streamlined, online format, in the setting of the Covid19 pandemic. We hypothesized that high levels of skill proficiency and learner satisfaction observed in previous in-person cohorts would be sustained amongst trainees in the online setting. OBJECTIVE: Our primary aim was to assess the skills proficiency of a cohort of internal medicine interns undergoing online training for GOC discussions with the three-Act Model. Our secondary goal was to assess learners' satisfaction with the prerecorded didactic video and online role plays. METHODS: Our team used REDCap for the data collection, and as the user-facing hub for learners to access didactic video content and for submitting surveys. We used Zoom to host synchronous discussions and role-play sessions. Trainers used the previously validated Goals of Care Assessment Tool (GCAT) to objectively rate intern proficiency in two role plays each. RESULTS: Twenty-one internal medicine interns began the training; 20 completed the training and were assessed using the GCAT. All but one intern who completed the training (19 of 20, 95%) achieved proficiency in leading a GOC discussion as measured objectively using the GCAT. Learner satisfaction was high: 1) 100% of respondents recommended the training to others as a "good" (26.7%) or "outstanding" experience (73.3%); 2) 93.3% were "satisfied" or "very satisfied" using a online, distance-learning format for the prerecorded didactic component; 3) 80% were "satisfied" or "very satisfied" using an online, distance-learning format for the role-play component; and 4) 93.3% were content with the number of role plays. The amount of time dedicated to this training decreased compared to prior years when done in person (six hours) - to four hours and 40 minutes for learners and under four hours for trainers. CONCLUSION: After completing the adapted online three-Act Model training, nearly all learners were scored to be proficient in GOC communication skills and reported high satisfaction with the online curriculum. Achieving high quality more efficiently represents genuine educational value. Further, these online teaching results show that the three-Act Model training can be delivered to geographically distanced learners.

Needs assessment of current palliative care education in U.S. hematology/oncology fellowship programs.

BACKGROUND: Palliative care (PC) education for fellows in hematology/oncology (H/O) training programs is widely accepted, but no studies to date have assessed PC education practices and values among program leadership. METHODS: Program Directors and Associate Program Directors of active H/O fellowship programs in the U.S.A. were surveyed. RESULTS: Of 149 programs contacted, 84 completed the survey (56% response rate), of which 100% offered some form of PC education. The most frequently utilized methods of PC education were didactic lectures/conferences (93%), required PC rotations (68%), and simulation/role-playing (42%). Required PC rotations were ranked highest, and formal didactic seminars/conferences were ranked fifth in terms of perceived effectiveness. The majority felt either somewhat (60%) or extremely satisfied (30%) with the PC education at their program. Among specific PC domains, communication ranked highest, addressing spiritual distress ranked lowest, and care for the imminently dying ranked second lowest in importance and competency. Solid tumor oncologists reported more personal comfort with pain management (p = 0.042), non-pain symptom management (p = 0.014), ethical/legal issues (p = 0.029), reported their fellows were less competent in pain assessment/management (p = 0.006), and communication (p = 0.011), and were more satisfied with their program's PC education (p = 0.035) as compared with hematologists. CONCLUSIONS: Significant disparities exist between those modalities rated most effective for PC education and those currently in use. Clinical orientation of program leadership can affect both personal comfort with PC skills and estimations of PC curriculum effectiveness and fellows' competency. H/O fellowship programs would benefit from greater standardization and prioritization of active PC education modalities and content.