End of life care of hospitalized patients with Parkinson disease: a retrospective analysis and brief review

BackgroundTowards the end of life (EOL), persons with parkinsonism (PwP) have complex needs and can present with unique palliative care (PC) challenges. There are no widely accepted guidelines to aid neurologists, hospitalists, or PC clinicians in managing the symptoms of PwP at EOL. We examined a population of PwP at EOL, aiming to describe trends of in-hospital management and utilization of PC services.MethodsAll PwP admitted to two hospitals during 2018 (N = 727) were examined retrospectively, assessing those who died in hospital or were discharged with hospice (EOL group, N = 35) and comparing them to the main cohort. Their demographics, clinical data, engagement of multidisciplinary and palliative services, code status changes, invasive care, frequency of admissions, and medication administration were assessed.ResultsAmong the EOL group, 8 expired in hospital, and 27 were discharged to hospice. Forty-six percent of EOL patients received a PC consultation during their admission. The median interval from admission to death was 37 days. Seventy-seven percent had a full code status on admission. Compared to hospice patients, those who expired in hospital had higher rates of invasive procedures and intensive care unit transfers (41% vs. 75%, in both variables), and lower rates of PC involvement (52% vs. 25%). The transition of code status change for the EOL group from Full code to Do Not Resuscitate (DNR) occurred at a median 4–5 days from admission. For patients that passed in the hospital, the median days from transition of code status to death was 0(IQR 0–1). Levodopa dose deviations were frequent in both EOL and non-EOL group, but contraindicated medications were infrequently administered (11% in EOL group vs. 9% in non-EOL group).ConclusionOur data suggest a low utilization of PC services and delayed discussions of goals of care. More work is needed to raise awareness of inpatient teams managing PwP regarding the unique but common challenges facing PwP with advanced disease. A brief narrative review summarizing the suggested management of symptoms common to hospitalized PwP near EOL is provided

Primary Care Practice Workplace Social Capital: A Potential Secret Sauce for Improved Staff Well-Being and Patient Experience

Patient experiences with the health-care system are increasingly seen as a vital measure of health-care quality. This study examined whether workplace social capital and employee outcomes are associated with patients’ perceptions of care quality across multiple clinic sites in a diverse, urban safety net care setting. Data from clinic staff were collected using paper and pencil surveys and data from patients were collected via a telephone survey. A total of 8392 adult primary care patients and 265 staff (physicians, nurses, allied health, and support staff) were surveyed at 10 community health clinics. The staff survey included brief measures of workplace social capital, burnout, and job satisfaction. The patient-level outcome was patients’ overall rating of the quality of care. Factor analysis and reliability analysis were conducted to examine measurement properties of the employee data. Data were aggregated and measures were examined at the clinic site level. Workplace social capital had moderate to strong associations with burnout ( r = −0.40, P < .01) and job satisfaction ( r = 0.59, P < .01). Mean patient quality of care rating was 8.90 (95% confidence interval: 8.86-8.94) ranging from 8.57 to 9.18 across clinic sites. Pearson correlations with patient-rated care quality were high for workplace social capital ( r = 0.88, P = .001), employee burnout ( r = −0.74, P < .05), and satisfaction ( r = 0.69, P < .05). Patient-perceived clinic quality differences were largely explained by differences in workplace social capital, staff burnout, and satisfaction. Investments in workplace social capital to improve employee satisfaction and reduce burnout may be key to better patient experiences in primary care

Impact of behavioral side effects on the management of Parkinson patients treated with dopamine agonists

Dopamine agonists are one of the main stay of treatment option for Parkinson disease (PD). Side effects that develop from their use are generally categorized into behavioral and non-behavioral. Behavioral side effects include: impulse control behavior disorder (ICD), psychosis and cognitive impairment. Non-behavioral side effects include: nausea/vomiting, “sleep attacks”, leg swelling, weight gain and orthostasis. The aim of this study is to evaluate the clinicians’ response to PD patients who developed behavioral side effects from dopamine agonists, in comparison to those patients who developed only non-behavioral side effects. We performed a retrospective chart review of all patients diagnosed with PD over a two year period. Among 313 patients who were on a dopamine agonist, 156 reported side effects. Sixty-five patients reported behavioral (with or without non-behavioral) side effects, while 91 experienced only non-behavioral side effects. Forty-nine out of the 65 patients (75.3%) who experienced behavioral side effects had their dopamine agonist dose decreased compared to 53 out of 91patients (58.2%) who experienced only non-behavioral side effects (Chi square = 4.92, p < 0.05). Patients with behavioral side effects were 3 times more likely have their dose decreased (OR = 3.3; 95%CI = 1.442–7.551; P = 0.005). However, neither taper speed nor the occurrence of dopamine agonist withdrawal syndrome (DAWS) differed between the two groups. Amongst PD patients treated with dopamine agonists, the presence of behavioral side effects independently increased the chance of dopamine agonist dose reduction. Prospective studies are needed to confirm these findings

Non- Motor Fluctuations in Parkinson’s Disease: Validation of the Non- Motor Fluctuation Assessment Questionnaire

BackgroundIn patients with Parkinson’s disease (PD), sleep, mood, cognitive, autonomic, and other non- motor symptoms may fluctuate in a manner similar to motor symptoms.ObjectivesTo validate a final version of a patient- rated questionnaire that captures the presence and severity of non- motor fluctuations in levodopa- treated PD patients (NoMoFA).MethodsWe recruited PD subjects from five movement disorders centers across the US and Canada. We assessed the internal consistency, floor and ceiling effects, test- retest reliability, and concurrent validity of NoMoFA. Classical test theory and item response theory methods informed item reduction and Delphi process yielded a final questionnaire.ResultsTwo hundred subjects and their care- partners participated in the study (age: 66.4- ±- 9.6- years; disease duration: 9- ±- 5.5- years; median Hoehn and Yahr [H&Y] OFF: 3 [range 1- 5]; mean Unified Parkinson’s Disease Rating Scale (UPDRS) III ON score: 27.4- ±- 14.9). Acceptability of the scale was adequate. There were floor effects in 8/28 items. Cronbach’s alpha was 0.894. While eight items had - item- to- total- correlations below the cutoff of 0.4, removing these items did not improve Cronbach’s alpha. Test- retest reliability was acceptable (intraclass correlation coefficient [ICC] 0.73; 95% confidence interval, 0.64- 0.80). Concurrent validity was adequate with all Spearman’s rho values comparing NoMoFA score to other measures of parkinsonian severity showing significance and in the expected direction. A final Delphi panel eliminated one item to avoid redundancy.ConclusionsThe final 27- item self- administered NoMoFA is a valid and reliable questionnaire, capturing both static and fluctuating non- motor symptoms in PD. © 2021 International Parkinson and Movement Disorder SocietyPeer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/168292/1/mds28507-sup-0001-Supinfo01.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/168292/2/mds28507_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/168292/3/mds28507-sup-0002-Supinfo02.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/168292/4/mds28507.pd