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.

Constricting Life Space and Likelihood of Neurodegenerative Disease in Community-Dwelling Older Men.

Importance: Life space is a measure of the frequency, range, and independence of movement through the environment. There is increasing interest in life space as a holistic measure of function in older adults, but the association between change in life space and incident neurodegenerative disease is unknown. Objective: To evaluate the association between change in life space and cognitive decline or incident neurodegenerative disease over 7 years among community-dwelling older men. Design, Setting, and Participants: In this cohort study, logistic regression analyses were used to examine the association of baseline and change in life space with change in cognition unadjusted and adjusted for demographics, cardiovascular risk factors, depression, gait speed, and physical activity. Mixed linear effects models were used to evaluate the association between change in life space and change in cognition. Men were recruited from 6 US sites to participate in a prospective, community-based cohort study of aging and followed-up from 2007 to 2014. Individuals with prevalent dementia or Parkinson disease (PD) at baseline were excluded. Data were analyzed from May 2022 to September 2023. Exposure: Life space, assessed using the University of Alabama at Birmingham Life Space Assessment and divided into tertiles. Main Outcomes and Measures: Participants completed the Modified Mini-Mental State (3MS) Test, and Trail-Making Test Part B at baseline and 7 years later. At follow-up, participants were asked about a new physician diagnosis of dementia and PD. Results: A total of 1684 men (mean [SD] age, 77.1 [4.2] years) were recruited and over 7 years of follow-up, 80 men (4.8%) developed dementia and 23 men (1.4%) developed PD. Mean (SD) life space score was 92.9 (18.7) points and mean (SD) change was -9.9 (22.3) points over follow up. In the adjusted model, each 1-SD decrement in life space was associated with increased odds of dementia (odds ratio [OR], 1.59; 95% CI, 1.28-1.98) but not PD (OR, 1.48; 95% CI, 0.97-2.25). For each 1-SD decrement in life space, men worsened by 20.6 (95% CI, 19.8-21.1) seconds in their Trails B score (P < .001) and declined by 1.2 (95% CI, 1.0-1.3) points in their 3MS score (P < .001) over 7 years. Conclusions and Relevance: In this study of 1684 men followed up over 7 years, change in life space was associated with faster cognitive decline and increased likelihood of neurodegenerative illness. Future studies should examine the role of clinician assessments or wearable electronics in tracking life space in older adults at risk of cognitive decline and neurodegenerative illness.

Cognitive and Functional Trajectories in Older Adults With Prediagnostic Parkinson Disease.

BACKGROUND AND OBJECTIVES: There is increasing interest in characterizing the earliest phases of Parkinson disease (PD). However, few studies have investigated prediagnostic trajectories of cognition and function. Our objective was to describe prediagnostic cognitive and functional trajectories in PD in older women and men. METHODS: We studied 9,595 women and 5,795 men from 2 prospective cohort studies of community-dwelling elders followed up to 20 years. In individuals without prevalent PD, we estimated the associations of incident PD diagnosis with rates of change in cognition and function before and after diagnosis compared with healthy older adults using multivariate mixed-effects models. RESULTS: Over follow-up, 297 individuals developed incident PD. Interactions between the terms in our model and sex were statistically significant for the 3 outcomes (p < 0.001 for all), so we stratified results by sex. Compared with older men without PD, men who developed PD exhibited faster decline in global cognition (0.04 SD more annual change, p < 0.001), executive function (0.05 SD more annual change, p < 0.001), and functional status (0.06 SD more annual change, p < 0.001) in the prediagnostic period. Women who developed PD compared with women without PD displayed faster decline in executive function (0.02 SD more annual change, p = 0.006) and functional status in the prediagnostic period (0.07 SD more annual change, p < 0.001). DISCUSSION: Individuals with incident PD exhibit cognitive and functional decline during the prediagnostic phase that exceeds rates associated with normal aging. Better understanding heterogeneity in prodromal PD is essential to enable earlier diagnosis and identify impactful nonmotor symptoms in all subgroups.

Association of Motor and Nonmotor Symptoms With Health-Related Quality of Life in a Large Online Cohort of People With Parkinson Disease.

BACKGROUND AND OBJECTIVES: There is growing interest in health-related quality of life (HRQOL) as a comprehensive view of the patient's well-being, guiding concept for the treating clinician, and therapeutic trial outcome measure for patients with Parkinson disease (PwPD). The key determinants of HRQOL have not been investigated in large populations of PwPD. Our objective was to evaluate correlates of HRQOL in a large, online cohort of PwPD. METHODS: As part of an ongoing online cohort study, we performed a cross-sectional analysis at enrollment of 23,058 PwPD. We conducted univariate and stepwise multivariate linear regression analyses of HRQOL as measured by the EQ-5D-5L tool. In addition, we performed an interaction analysis to evaluate heterogeneity of the effect of motor symptoms on HRQOL and Spearman correlation analysis to evaluate the association of nonmotor symptoms with HRQOL. RESULTS: In the multivariate linear regression model, participants with moderate or severe depression, more severe motor symptoms, and a higher burden of medical comorbidities had the most substantially decreased HRQOL as measured by the EQ index (ß -0.11, -0.18, -0.02, -0.01, respectively; p < 0.001 for all). An interaction analysis showed that more severe motor symptoms had a higher effect on individuals with female sex, lower educational level, lower income, more severe depression, or more severe cognitive impairment (p ≤ 0.01 for interaction terms). Neuropsychiatric symptoms and falls had the most negative associations with HRQOL (ρ -0.31 to 0.37; p < 0.0001). DISCUSSION: Potentially treatable motor and nonmotor symptoms, particularly neuropsychiatric symptoms, account for a large amount of the variation in HRQOL in PwPD. Motor symptoms may have differential effects on HRQOL in different demographic and clinical subpopulations, highlighting important areas for future health disparities research. Our findings provide targets for clinician intervention and future research on symptom management to optimize HRQOL in PD. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that motor and neuropsychiatric symptoms are associated with HRQOL in PwPD.

The epidemiology of cognitive function in Parkinson's disease.

Epidemiology is the study of the distribution of disease in human populations, which is important in evaluating burden of illness, identifying modifiable risk factors, and planning for current and projected needs of the health care system. Parkinson's disease (PD) is the second most common serious neurodegenerative illness and is expected to further increase in prevalence. Cognitive changes are increasingly viewed as an integral non-motor feature in PD, emerging even in the prodromal phase of the disease. The prevalence of PD-MCI ranges from 20% to 40% depending on the population studied. The incidence of PD-dementia increases with duration of disease, with estimates growing from 3% to 30% of individuals followed for 5 years or less to over 80% after 20 years. There are several challenges in estimating the frequency of cognitive change, including only recently standardized diagnostic criteria, variation depending on exact neuropsychological evaluations performed, and differences in population sampling. Clinical features associated with cognitive decline include older age, increased disease duration and severity, early gait dysfunction, dysautonomia, hallucinations and other neuropsychiatric features, the presence of REM behavior disorder, and posterior predominant dysfunction on neuropsychological testing. There is increasing evidence that genetic risk factors, in particular GBA and MAPT mutations, contribute to cognitive change. Possible protective factors include higher cognitive reserve and regular exercise. Important sequelae of cognitive decline in PD include higher caregiver burden, decreased functional status, and increased risk of institutionalization and mortality. Many remaining uncertainties regarding the epidemiology of cognitive change in PD require future research, with improved biomarkers and more sensitive and convenient outcome measures.

Apathy and risk of probable incident dementia among community-dwelling older adults.

OBJECTIVE: To evaluate the association between baseline apathy and probable incident dementia in a population-based sample of community-dwelling older adults. METHODS: We studied 2,018 white and black community-dwelling older adults from the Health, Aging, and Body Composition (Health ABC) study. We measured apathy at year 6 (our study baseline) with the modified Apathy Evaluation Scale and divided participants into tertiles based on low, moderate, or severe apathy symptoms. Incident dementia was ascertained over 9 years by dementia medication use, hospital records, or clinically relevant cognitive decline on global cognition. We examined the association between apathy and probable incident dementia using a Cox proportional hazards model adjusting for demographics, cardiovascular risk factors, APOE4 status, and depressed mood. We also evaluated the association between the apathy group and cognitive change (as measured by the modified Mini-Mental State Examination and Digit Symbol Substitution Test over 5 years) using linear mixed effects models. RESULTS: Over 9 years of follow-up, 381 participants developed probable dementia. Severe apathy was associated with an increased risk of dementia compared to low apathy (25% vs 14%) in unadjusted (hazard ratio [HR] 1.9, 95% confidence interval [CI] 1.5-2.5) and adjusted models (HR 1.7, 95% CI 1.3-2.2). Greater apathy was associated with worse cognitive score at baseline, but not rate of change over time. CONCLUSION: In a diverse cohort of community-dwelling adults, apathy was associated with increased risk of developing probable dementia. This study provides novel evidence for apathy as a prodrome of dementia.

SIS.NET: a randomized controlled trial evaluating a web-based system for symptom management after treatment of breast cancer.

BACKGROUND: As cancer survivorship increases, health care systems will be challenged to meet patient needs. With the limited availability of clinician time and resources, novel methods of using patient-reported outcomes may improve the quality and efficiency of follow-up care in patients with breast cancer. METHODS: The authors conducted a randomized trial in patients with TNM stage I to III breast cancer comparing standard care with SIS.NET (System for Individualized Survivorship Care, based on patient self-reported data, with review by Nurse practitioners, targeted Education, and Triage), a follow-up protocol including integration of online health questionnaires at 3-month intervals and the evaluation of self-reported symptoms monitored and addressed remotely by a nurse practitioner (NP). The primary endpoint was to quantify the time between symptom reporting and remote evaluation of symptoms. The secondary endpoint was to compare use of health care resources (breast cancer-related visits, total medical appointments, and laboratory and imaging studies) over an 18-month period. RESULTS: A total of 102 participants were enrolled; 2 patients were excluded due to cancer recurrence. In the SIS.NET arm, 74% of new or changed self-reported symptoms were reviewed by a NP in <3 days. SIS.NET patients reported more new or changed symptoms compared with standard care patients (7.36 vs 3.2; P = .0045). During the 18-month trial, there were no statistically significant differences noted between the SIS.NET and standard care arms with regard to oncology-related appointments (mean, 4.2 vs 4.1 appointments), number of physician visits (mean, 10.8 vs 9.6 visits), or medical tests (mean, 5.5 vs 5 tests). CONCLUSIONS: Integration of online health questionnaires with remote review by a NP facilitated symptom reporting and may provide a means of convenient symptom assessment, but it did not appear to reduce health care resource use.