Objective: To document and assess the needs, experiences, and self-reported challenges among patients and care partners that impact optimal care for Parkinson’s disease (PD) during hospitalization.

Background: People with PD (PwP) have increased risk of hospitalization and related complications. Previous studies on PD hospital care have focused on review of clinical features, complications, and timely provision of medications [1,2]. A holistic understanding of the perspectives of PwP and family care partners (CPs) on hospitalization is a critical step in the patient-centered approach to improve hospital care and outcomes for PD [3].

Method: Seven 2-hour focus groups were hosted virtually. Participants met eligibility criteria for PD or CP of PwP and experienced an inpatient hospital stay for more than 48 hours, excluding deep brain stimulation surgery implantation, between 2018 and 2021. Structured discussion was centered on care for PD, from time the decision was made for hospitalization through discharge. Qualitative data was analyzed thematically.

Results: Seven focus groups included 12 PwP (69% in 65-74 age range; mean disease duration 9.05 yrs) and 13 CPs (44% in 65-74 age range), including 5 PwP-CP dyads, for a total of 25 participants. Non-white constituted 28% of all participants and 84% had unplanned hospitalizations. Three primary factors influenced the hospitalization experience: composition of/interaction with the care team, management of PD medications and the role of CPs. The importance of integrated care was apparent, including involvement of nurses, consultation with neurology and rehabilitation services, clarity of discharge instructions, and PwP inclusion in decision-making. PwP and CPs commonly felt that care teams were not knowledgeable about PD. Thematic analysis further revealed frequent CP advocacy, particularly when  PwP had cognitive impairment, as well as motivation among PwP and CP to actively educate providers about PD.

Conclusion: This study is a novel and patient-centered approach to understanding PD hospital care. Results reinforce the importance of education among healthcare teams on unique considerations for PD care and of the need to provide tools for self-advocacy in the hospital setting. Disease-specific challenges and PwP/CP perspectives must be considered in further assessment of PD hospitalization and the formulation of guidelines for inpatient care of PD patients.

References: [1] Chou KL, Zamudio J, Schmidt P, Price CC, Parashos SA, Bloem BR, Lyons KE, Christine CW, Pahwa R, Bodis-Wollner I, Oertel WH, Suchowersky O, Aminoff MJ, MalatyIA, Friedman JH, Okun MS: Hospitalization in Parkinson disease: A survey of National Parkinson Foundation Centers. Parkinsonism Relat Disord. 2011, 17: 440-445
[2] Aslam S, Simpson E, Baugh M, Shill H. Interventions to minimize complications in hospitalized patients with Parkinson disease. Neurology: Clinical Practice. 2020;10:23-28.
[3] Aminoff MJ, Christine CW, Friedman JH, Chou KL, Lyons KE, Pahwa R, Bloem BR, Parashos SA, Price CC, Malaty IA, Iansek R, Bodis-Wollner I, Suchowersky O, Oertel WH, Zamudio J, Oberdorf J, Schmidt P, Okun MS: Management of the hospitalized patient with Parkinson’s disease: Current state of the field and need for guidelines. Parkinsonism Relat Disord. 2011, 17: 139-145

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MDS Abstracts - https://www.mdsabstracts.org/abstract/more-than-medications-patient-and-care-partner-perspectives-on-care-for-parkinsons-during-hospitalization/