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Background:Palliative care (PC) is recommended for people with amytrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS.Methods:Observational cohort study of patients with ALS referred to outpatient PC and seen for at least three PC visits October 2017-July 2020.Results:Fifty-five patients met inclusion criteria. Three-quarters (74.5%) were Caucasian and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%).Patients had a mean of five scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), non-pain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%).With PC, the rate of completion of advance directives increased from 16.4% to 36.4% (p=0.001) and Physician Orders for Life-Sustaining Treatment forms from 10.9% to 63.6% (pConclusions:Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on ALS patients, families, and clinicians.

Background: The morbidity and mortality of interstitial lung disease (ILD) is high, despite novel therapeutics. Recognizing unmet needs for symptom management, advance care planning (ACP), and supp...

Background: Telemedicine visits reduce the physical and financial burdens associated with in-person appointments, especially for patients with serious illness. Little is known about patient and caregiver preferences regarding telemedicine visit timing and the discussion of sensitive topics by telemedicine. Objective: To characterize the experience of patients with serious illness and their caregivers receiving palliative care (PC) by telemedicine. Design: Mixed-methods telephone survey. Setting/Subjects: Patients and family caregivers who had at least one telemedicine visit with the outpatient PC team at our urban academic medical center. Results: A total of 35 patients and 15 caregivers were surveyed. Patient mean age was 61 years, 49% had cancer, and 86% were Caucasian. Caregiver mean age was 62 years. Mean satisfaction with PC telemedicine visits was 8.9 out of 10 for patients; 8.8 for caregivers. Patients (97%) and caregivers (100%) felt comfortable discussing sensitive topics over video. Participants felt telemedicine was an acceptable format to discuss most sensitive topics but 53% of caregivers preferred to receive bad news in person. Participants valued the convenience of telemedicine; they had concerns about rapport building and desired a more user-friendly telemedicine platform. Conclusions: Patients with serious illness and their caregivers rated telemedicine visits highly and felt comfortable discussing sensitive topics by video. Concerns included rapport building and telemedicine platform setup and quality. The rapid growth of telemedicine during coronavirus disease 2019 creates an imperative for research to understand the impact on the quality of care and mitigate any negative effects of telemedicine within a diverse population of patients.

Background: Patients with hematologic malignancies are less likely to be referred to palliative care (PC) compared to those with solid malignancies. There is little that is known about the healthcare utilization of patients with hematologic malignancies who receive outpatient PC concurrently with cancer-directed therapy. The aim of this study was to describe the demographic and clinical characteristics and health care utilization of patients with hematologic malignancies who received longitudinal, concurrent outpatient PC. Methods: We conducted a single-center, retrospective cohort study of all patients with hematologic malignancies who received embedded outpatient PC at the malignant hematology clinic between April 1, 2017 and December 31, 2018. Patients were referred to PC by their primary oncologist or hematology nurse practitioner (NP). Patients referred to PC were seen by a PC NP with expertise in hematologic malignancies. Follow-up visits with the outpatient PC NP were scheduled as needed. Demographics, clinical characteristics, and reasons for referral were extracted from the electronic health record. For patients who were followed by PC for at least 6 months, the number of hospitalizations and emergency department (ED) visits, as well as inpatient costs were compared from the 6 months prior to enrollment in PC to the 6 months after enrollment in PC. Approval for this study was obtained from the UCSF IRB. Results: Overall, 80 patients who were seen in the malignant hematology clinic were referred for embedded PC during our study period. Of these patients, 45% (n= 36) were female. Median age was 57 years (range: 27-89). Common primary diagnoses were myeloma (47.3%, n= 38), lymphoma (18.8%, n= 15), and acute myeloid leukemia (15%, n= 12). The most frequent reasons for referral to PC were pain (32.7%, n= 34), fatigue (16.3%, n= 17), and mood disorders (11.5%, n= 12). There were 9 referrals (8.7%) for advance care planning prior to bone marrow transplant (BMT). One quarter of the patients (n= 20) were referred to PC for two or more reasons. Patients were followed in the PC clinic for a median of 3.18 months (mean 8.03 months, range 0 - 36 months, SD 9.6 months) and patients had a median of 3 PC visits (mean 5, range 1-27, SD 6). The median overall survival of the patient population was 36.5 months (SD 35.8 months). There were 31 patients who were followed in the PC clinic for at least 6 months and were included in our healthcare utilization analyses. The total number of hospital encounters decreased from 1.48 inpatient admissions/ED visits in the 6-months before enrollment in PC to 0.71 per patient in the 6-months after enrollment in PC (p=0.04). Total inpatient direct costs per patient were $52,250.65 in the 6 months before PC enrollment and $30,360.90 in the 6 months after enrollment (p=0.18). The cost of inpatient medical hospitalizations went from $23,457.68 to $4,621.26 per patient (p=0.05), the cost of procedure-based hospitalizations, which included hospitalization for BMT, went from $27,667.84 to $25,434.48 (p=0.90), and the cost of ED visits went from $1,125.13 to $305.16 (p=0.25). Conclusion: Our study suggests that outpatient PC has an important role for patients with hematologic malignancies far upstream of the end-of-life period. Patients were referred for a wide variety of reasons, including management of various symptoms and advance care planning prior to BMT. There was a statistically significant and substantial decrease in the number of hospital and ED encounters per patient after enrollment in PC. There was also a trend towards overall cost savings, although this did not reach statistical significance. Further research is warranted to explore the effects of outpatient PC co-management on symptoms, rates of advance care planning, and patient/family experience for patients with hematologic malignancies. Disclosures Schoenbeck: American Society of Hematology: Research Funding. Mannis:Glycomimetics, Forty Seven, Inc, Jazz Pharmaceuticals: Research Funding; AbbVie, Agios, Bristol-Myers Squibb, Genentech: Consultancy.

Objective: To determine the amount of care (measured in time) required by patients discharged from an inpatient rehabilitation unit. Design: A total of 103 consecutive patients discharged from an inpatient rehabilitation unit to home were contacted 1 mo after discharge and asked to report the amount of help that they required at home. Correlations were made between the time of help that the subjects reported needing and their age, sex, living situation, marital status, diagnosis, and the score on the FIM at the time of discharge from the rehabilitation unit. Results: The score on the FIM correlated with the time of help reported by the patients. Linear regression analysis showed that each 5-point decrement in FIM score correlates with the need for about 1 hr per day of help with mobility, basic activities of daily living, and instrumental activities of daily living. Conclusions: The FIM can be used to provide an estimate of the amount of time it will take families to provide help for patients discharged from a rehabilitation unit.