Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

BACKGROUND: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability. AIM: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease. DESIGN: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care). Transcripts were coded and thematically analyzed through a combination of team-based inductive and deductive coding. SETTING/PARTICIPANTS: Twenty-eight patients and 33 care partners purposively sampled from participants in a randomized clinical trial of a palliative care intervention for Parkinson's disease and related disorders conducted at nine sites. RESULTS: Benefits of the intervention included management of a wider range of non-motor symptoms, facilitation of conversations about the future, greater engagement with the health care team, and increased referrals to resources. Participants identified areas of improvement, including uptake of palliative care training by community neurologists, additional prognostic counseling, and clarity and timeliness of communication with the multidisciplinary team. CONCLUSIONS: Clinicians caring for people with Parkinson's disease and related disorders should screen for non-motor symptoms, provide regular prognostic counseling, and refer to specialty palliative care services earlier in the course of illness. Future interventions should be designed to promote uptake of palliative care training by community neurologists and further optimize referral to and coordination with in-person or remote specialty palliative teams.

Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives.

BACKGROUND: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19's impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. AIM: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. DESIGN: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. SETTING/PARTICIPANTS: Data was collected from 108 patients with Parkinson's disease, Alzheimer's disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). RESULTS: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. CONCLUSIONS: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.

Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

Background and Objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

Parkinson disease patients' and carepartners' perceptions of palliative care.

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation. Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings. Design, Setting, and Participants: This pragmatic, stepped-wedge comparative effectiveness trial enrolled and observed participants from 19 community neurology practices supported by PC teams at 2 academic centers from March 8, 2017, to December 31, 2020. Participants were eligible if they had PDRD and moderate to high PC needs. A total of 612 persons with PDRD were referred; 253 were excluded. Patients were excluded if they had another diagnosis meriting PC, were receiving PC, or were unable or unwilling to follow study procedures. Patients received usual care or the intervention based on when their community neurologist was randomized to start the intervention. Data were analyzed from January 2021 to September 2023. Intervention: The intervention included (1) PC education for community neurologists and (2) team-based PC support via telehealth. Main Outcomes and Measures: The primary outcomes were differences at 6 months in patient quality of life (QOL; measured by the Quality of Life in Alzheimer Disease Scale [QOL-AD]) and caregiver burden (Zarit Burden Interview) between the intervention and usual care. Results: A total of 359 patients with PDRD (233 men [64.9%]; mean [SD] age, 74.0 [8.8] years) and 300 caregivers were enrolled. At 6 months, compared with usual care, participants receiving the intervention had better QOL (QOL-AD score, 0.09 [95% CI, -0.63 to 0.82] vs -0.88 [95% CI, -1.62 to -0.13]; treatment effect estimate, 0.97; 95% CI, 0.07-1.86; P = .03). No significant difference was observed in caregiver burden (Zarit Burden Interview score, 1.19 [95% CI, 0.16 to 2.23] vs 0.55 [95%, -0.44 to 1.54]; treatment effect estimate, 0.64; 95% CI, -0.62 to 1.90; P = .32). Advance directive completion was higher under the intervention (19 of 38 [50%] vs 6 of 31 [19%] among those without directives at the beginning of the study; P = .008). There were no differences in other outcomes. Conclusions and Relevance: PC education for community neurologists and provision of team-based PC via telehealth is feasible and may improve QOL and advance care planning. Overall treatment effects were small and suggest opportunities to improve both the intervention and implementation. Trial Registration: ClinicalTrials.gov Identifier: NCT03076671.

Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.

Aim: To understand Parkinson's Disease (PD) care partners' a) specific challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. Method: Using a qualitative descriptive design, semi-structured interviews with family care partners (n = 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural). Interviews were audio-recorded, de-identified, transcribed verbatim, and coded in a phased manner. The research team analyzed the data and identified themes. Results: During the pandemic, the already difficult task of caregiving was made worse by having to choose between poor options. Five themes exemplified PD care partner experiences: (1) Managing risks and benefits of medical care in settings outside the home vs meeting these needs at home; (2) Struggling to maintain employment benefits with the costs of care and risks of bringing in outside caregivers; (3) Struggling to balance caregiving and self-care; (4) Struggling to be supportive and taking on new caregiving roles in the face of less support services; and (5) Wanting social connections and feeling pressured to maintain isolation. Care partners wanted timely access to, and guidance from healthcare teams to help them. Conclusions: Care partner burden was worsened by lack of guidance when confronted by choices that could lead to negative outcomes. Movement disorder and palliative care providers may be able to alleviate some care partner burden through building systems for timely access and guidance.

Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

Background and Objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC. Methods: PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate. Results: A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness. Discussion: Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.

Experience of Community Neurologists Providing Care for Patients With Neurodegenerative Illness During the COVID-19 Pandemic.

OBJECTIVE: Health care delivery systems transformed rapidly at the beginning of the coronavirus disease 2019 (COVID-19) pandemic to slow the spread of the virus while identifying novel methods for providing care. In many ways, the pandemic affected both persons with neurologic illness and neurologists. This study describes the perspectives and experiences of community neurologists providing care for patients with neurodegenerative illnesses during the COVID-19 pandemic. METHODS: We conducted a qualitative study with 20 community neurologists from a multisite comparative-effectiveness trial of outpatient palliative care from July 23, 2020, to November 11, 2020. Participants were interviewed individually about the impact of the coronavirus disease 2019 (COVID-19) pandemic on their professional and personal lives. Interviews were analyzed with matrix analysis to identify key themes. RESULTS: Four main themes illustrated the impact of the pandemic on community neurologists: (1) challenges of the current political climate, (2) lack of support for new models of care, (3) being on the frontline of suffering, and (4) clinician self-care. Taken together, the themes capture the unusual environment in which community neurologists practice, the lack of clinician trust among some patients, patient and professional isolation, and opportunities to support quality care delivery. CONCLUSIONS: The COVID-19 pandemic and pandemic politics created an environment that made care provision challenging for community neurologists. Efforts to improve care delivery should proactively work to reduce clinician burnout while incorporating support for new models of care adopted due to the pandemic. TRIAL REGISTRATION INFORMATION: ClinicalTrials.gov identifier: NCT03076671.