Highlights
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Screening for all recommended quality measures in Parkinson’s disease is poor.
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Apathy and impulse control disorders have a particularly low frequency of assessment.
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Primary care providers contribute substantially to advance care planning, depression screening, and exercise counseling.
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Systematic approaches to screening, and leveraging partnerships with primary care providers, may improve quality of life.
Abstract
Background
Patients with Parkinson’s Disease (PWPs) often have both motor and non-motor manifestations requiring specialized care. Neurologists typically lead their care; however, the population of PWPs is exceeding the supply of neurologists. Primary care providers (PCPs) may need to contribute to improve care.
Objective
To measure American Academy of Neurology quality metric (QM) adherence between neurologists and PCPs for PWPs.
Methods
We conducted a single-center retrospective, descriptive analysis assessing 14 QMs in the past year for PWPs established with a neurologist and PCP. McNemar’s test assessed statistical differences between groups. Logistic regression models explored the impact of age, sex, and visit frequency on QM adherence
Results
On average, 8.9 QMs were addressed among 89 PWPs. Motor complications, rehabilitation referrals, falls, and autonomic dysfunction were the most often addressed while apathy and impulse control disorder were the least. Neurologists alone met motor complications, psychosis, impulse control disorder, and sleep disturbance significantly more than PCPs alone while PCPs assessed depression and advance care planning more often. PCP involvement improved adherence throughout. Depression, apathy, and advance care planning metric adherence were significantly impacted by age and/or visit frequency.
Conclusions
A team-based approach to quality metric adherence may reduce the burden on providers and improve care for PWPs.
The United States sees up to 90,000 new diagnoses of Parkinson’s disease (PD) annually, with the World Health Organization estimating a doubling in disease burden over the last 25 years [1]. The constellation of symptoms for those affected is large, including both motor and non-motor manifestations, ranging from tremor and falls to mood disorders and sleep disturbances.
Due to the heterogeneity in clinical presentation, patients with Parkinson’s disease (PWPs) are cared for in a variety of outpatient settings, typically led by a neurologist. It has been previously shown that PWPs in the care of a neurologist, compared to a primary care provider (PCP) alone, have better outcomes: lower rates of hospitalization, delayed admission to skilled nursing facilities, and reduced mortality [[2], [3]]. While this is encouraging, the reality remains that there is limited access to neurologists within the United States. This care deficit is especially stark in Oregon, the location of this study, where the majority of counties have no neurologist of any kind [4]. Although the problem is multifaceted, it is clear the supply of neurologists has not increased commensurately with the rising demand for neurodegenerative disease care, leading to lack of care utilization by patients with neurological conditions and widening of the gap worldwide [5]. This trend is expected to worsen with most neurologists subspecializing, leaving fewer to care for the rising prevalence of chronic neurologic conditions [6].
Though it is crucial for a neurologist to be a leading advocate for PWPs, optimal care still requires a multidisciplinary team often including a PCP. More so, the holistic approach taken by PCPs positions them well to manage the plethora of non-motor manifestations of disease, including depression, constipation, sleep disturbances, cognitive dysfunction, and neuropsychiatric disorders. These aspects of disease are often not addressed adequately, even at neurology specialist centers [7]. With the expanding population of PWPs and low supply of neurologists, there is an urgency for streamlined guidelines to inform delivery of high-quality care for the myriad of PD symptoms.
One solution proposed by the American Academy of Neurology (AAN) is following a published checklist of quality metrics (QMs) to aid practitioners in addressing important domains of care for PD [8]. Since this proposal, it is unknown how successful providers have been at screening for and addressing these quality measures. The act of screening is critical as recent work has shown that it can directly improve care, even in challenging areas like depression, with one study showing increased quality of life scores at one-year follow-up [9].
This study conducted a current state analysis to identify how often neurologists and PCPs were meeting the QMs published from AAN. We selected QMs that were included in AAN’s 2020 guidelines, along with others felt to be pertinent to the care of PWPs, including two retired from the 2015 guidelines [10]. This study aimed to reveal areas of strengths and weaknesses for neurologists and PCPs in the care of PWPs.
1 Methods
This retrospective, descriptive analysis utilized data from the electronic health record (EHR), Epic, and chart review. Patients from an internal medicine clinic in Oregon with a documented encounter or problem list diagnosis of Parkinson’s disease (ICD-10 code: G20.x) and at least one PCP visit and one neurology visit from July 1, 2023-June 30, 2024 were included. Diagnoses of PD were confirmed by a movement disorders specialist (L.E.N.).
We assessed 14 quality metrics of care among PWPs as outlined in the 2015 and 2020 AAN Parkinson’s Disease Quality Measurement sets: prescription of dopamine-blocking medications, motor complications, rehabilitative therapy referral, exercise counseling, anxiety, apathy, depression, psychosis, impulse control disorder (ICD), sleep disturbance, cognitive screening, autonomic dysfunction, falls, and advance care planning. Two physicians (L.E.N. and S.N.) reviewed patient records for documentation of each QM to assess whether they were met within a 12-month period by a neurologist and/or PCP. We utilized the AAN guidelines to create a protocol to ensure a structured chart review was conducted (see Supplemental Table 1 for chart review criteria). Discrepancies were reviewed until a consensus was reached.
Frequencies were calculated for the number of metrics met overall and by provider type for each quality metric. We used McNemar’s test to determine any statistically significant differences between provider type for each metric. Logistic regression models were used to explore the impact of factors including age, sex, and visit frequency on quality metric adherence. All statistical analyses were conducted in R version 4.1.3 with a p-value of 0.05 considered significant.
2 Results
Out of 107 patients meeting inclusion criteria, 89 were confirmed to have PD. Our sample was 55.1% male, 91.0% white, and had an average age of 76.8 ± 8.0 years. Patients had a mean of 3.7 ± 3.6 neurology visits and 4.0 ± 3.3 PCP visits. Overall, the mean number of QMs assessed was 8.9, out of a possible 14, in the one-year period. No patient had greater than 10 QMs assessed, and 36% had fewer than half of the QMs assessed in the one-year period (Fig. 1).
Fig. 1.
Distribution of QMs for PWP. Histogram showing the counts of quality metrics (QMs) met for each patient with Parkinson’s disease (PWP).
As shown in Table 1, the most common metrics met by PCP and neurologists combined were motor complications (90%), rehab referrals (93%), falls (94%), and autonomic dysfunction (92%) whereas the lowest were apathy (13%), ICD (13%), anxiety (55%), and psychosis (56%). Neurologists adequately documented a mean of 7.0 quality metrics, significantly assessing motor complications (61.8% v. 4.5%), psychosis (28.1% v. 5.6%), sleep disturbance (44.9% v. 15.7%), cognitive dysfunction (31.5% v. 11.2%), and impulse control disorder (12.4% v. 0%) to a greater degree than PCPs. PCPs, on average, documented an additional 1.9 unique QMs. The biggest gains from PCP involvement, compared to neurologists alone, were made in advance care planning (50.6% v. 4.5%) and depression (40.5% v. 14.6%). PCPs also improved overall adherence for exercise counseling, but the difference with neurologists was not statistically significant.
Table 1.
Quality metric adherence overall, by provider type alone, and by involved provider type.
|
Parkinson's Disease(n=89) |
Metric MetN (%) | NeurologistOnly MetN (%) | PCP OnlyMetN (%) | Both MetN (%) | p-value |
|---|---|---|---|---|---|
| Quality Metric | |||||
| Motor Complications | 80 (89.89) | 55 (61.80) | 4 (4.49) | 21 (23.60) | <0.001* |
| Rehabilitation | 83 (93.26) | 26 (29.21) | 19 (21.35) | 38 (42.70) | 0.37 |
| Exercise Counseling | 59 (66.29) | 17 (19.10) | 20 (22.47) | 22 (24.72) | 0.74 |
| Mood & Psychosis | 85 (95.51) | ||||
| Anxiety | 49 (55.06) | 14 (15.73) | 16 (17.98) | 19 (21.35) | 0.86 |
| Apathy | 12 (13.48) | 5 (5.62) | 5 (5.62) | 2 (2.25) | 0.99 |
| Depression | 77 (86.52) | 13 (14.61) | 36 (40.45) | 28 (31.46) | 0.002* |
| Psychosis | 50 (56.18) | 25 (28.09) | 5 (5.62) | 20 (22.47) | <0.001* |
| Impulse Control Disorder | 12 (13.48) | 11 (12.36) | 0 (0.00) | 1 (1.12) | 0.003* |
| Sleep Disturbance | 75 (84.27) | 40 (44.94) | 14 (15.73) | 21 (23.60) | <0.001* |
| Cognitive Dysfunction | 73 (82.02) | 28 (31.46) | 10 (11.24) | 35 (39.33) | 0.006* |
| Autonomic Dysfunction | 82 (92.13) | 22 (24.72) | 16 (17.98) | 44 (49.44) | 0.42 |
| Falls | 84 (94.38) | 12 (13.48) | 15 (16.85) | 57 (64.04) | 0.70 |
| Advance Care Planning | 54 (60.67) | 4 (4.49) | 45 (50.56) | 5 (5.62) | <0.001* |
indicates statistical significance with α set to 0.05 according to McNemar’s test comparing adherence rates of ‘neurologist only’ and ‘PCP only’; PCP: Primary Care Provider
Logistic regression models identified patient populations that were more likely to meet certain quality metrics. Three models had factors significantly impacting the outcome – depression, advance care planning, and apathy. The odds of meeting the depression metric increased by 46% for every one unit increase in number of PCP visits and decreased by 10% for every one unit increase in age. For every one unit increase in age, the odds of meeting the advance care planning metric increased by 12%. The odds of meeting the apathy metric increased by 20% for every one unit increase in number of neurology visits.
3 Discussion
PWPs suffer from several motor and non-motor symptoms that increase their disease burden and adversely impact their quality of life. This burden is exacerbated by limited access to neurologists and inconsistency in care delivered between clinical environments. Our study assessed the number of QMs met during patient visits with a neurologist versus a PCP at a single academic site. On average in a single 12-month period, 63.5% of pre-defined QMs were assessed. Neurologists adequately documented several measures; however, we found that PCPs improved all but one measure, with the largest gains occurring in advance care planning and depression screening, while overall contributing to a gain of two QMs on average.
While designed as a current state analysis, additional logistic regression analysis offered some exploratory insights into demographic factors that may drive QM adherence. Notably, younger patients were more likely to meet the depression metric. This finding is problematic, although not surprising, as barriers to mental health care are known to exist for PWPs [11], and in a broad older population, depression is often underdiagnosed [12]. Normalization of depression in older adults and increased awareness of its prevalence in PWP present opportunities for improvement. Encouragingly, screening for depression was more likely with increased visit frequency. Previous research indicates depression correlates strongest with quality of life in PWPs [[13], [14]]; therefore, better screening is a logical first step. Moreover, one prospective study suggested that increasing screening was possible and improved overall quality of life, driven mostly by improved emotional sub-scores [9].
In contrast, older patients were more likely to meet the advanced care planning metric. While this finding is somewhat expected – an age cutoff can easily trigger an alert in an EHR – PWPs are likely to deal with cognitive impairment and eliciting care preferences prior to the development of such may have a meaningful impact on goal concordant care. Time constraints are likely also a contributor to the low frequency of advance care planning discussions in our study, but given these discussions have been shown to directly improve quality of life [15] and that other neurological conditions with higher advance care planning rates show care improvement [16], creative solutions to discuss this subject during the appointment are needed and possible.
Time constraints likely also inhibit a recommendation to exercise; however, studies show that PWPs who receive exercise counseling during initial visits with their physician are more likely to participate in exercise [17]. The benefits of aerobic exercise in PWPs are well-characterized, with improvements made in balance, gait, and motor function [18]. Other forms of exercise, including dance and tai chi, also show promise in slowing disease-progression and improving quality of life among PWPs [19]. Therefore, we encourage providers to consider early exercise counseling that encourages a range of exercise forms.
It is encouraging to note that only four of the 89 patients reviewed were taking a potentially inappropriate medication (one each for Lithium, rabeprazole, compazine, and cariprazine). The patient on compazine was only taking it during an inpatient stay and the other three patients had explicit shared decision-making discussions documented. More disconcerting is the low frequency of screening for impulse control disorders (ICDs; e.g., compulsive gambling, buying, binge eating, and sexual behavior), especially since three patients were taking dopamine agonists but were not queried. This can be problematic, as a large cross-sectional study of 3,090 PD patients showed a point prevalence of 13.6% for ICD symptoms, almost entirely driven by dopamine agonist use, and is a big driver of poor quality of life. [20] Moreover, interventions are limited [21], and early detection is paramount.
Limitations of this study include being a relatively small, non-diverse patient population from a single academic site, potentially limiting generalizability. A more inclusive data set could provide valuable insight into the health inequities that exist among PWPs, as previous work demonstrates African-American PWPs are four times less likely to receive treatment for their disease [22]. Likewise, more rigorous collection of objective data (e.g. standardized motor assessments, non-motor symptom severity scales, or caregiver burden scales) and qualitative interviews with both neurologists and PCPs could help identify specific clinical, demographic or other variables which contribute to suboptimal assessment of these QMs.
Implementation of an EHR template addressing all quality metrics could improve adherence and potentially improve outcomes for PWPs. Studies have found that highest rates of documentation and compliance across the 10 quality metrics proposed by the AAN are seen when there was a standardized protocol [23]. Establishing a defined protocol for institutions to evaluate their own achievement of these quality measures will encourage equitable care across all clinical environments, and a prospective observational study can determine if this adherence translates to improved patient-level outcomes.
In conclusion, at a single academic center, we observed that clinicians routinely address rehabilitation referrals, falls, and autonomic dysfunction (>90%); in contrast, screening was low for ICD, anxiety, apathy, and psychosis. PCPs made the biggest gains in screening for depression, counseling on exercise, and discussing advance care directives suggesting a team-based model may deliver optimal care to PWPs. Future studies are needed to determine the best methods of tracking these measures and evaluating if screening leads to meaningful improvements in patient-level outcomes.
Ethical Compliance: The OHSU Institutional Review Board approved this study (#26186). Informed patient consent was not necessary for this work. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this work is consistent with those guidelines.
Authors’ Roles: Design: B.D., S.N., and L.E.N.; Execution: B.D., K.S., M.B., S.N., and L.E.N.; Analysis: T.B., B.D., K.S., M.B., S.N., and L.E.N.; Writing: T.B., B.D., K.S., M.B., and L.E.N.; Editing of final version of the manuscript: T.B., B.D., S.N., and L.E.N.
Financial Disclosures
None.
CRediT authorship contribution statement
Tanner Bradford: Writing – original draft, Formal analysis. Bryanna De Lima: Writing – review & editing, Software, Methodology, Formal analysis, Data curation. Kahley Milauskas: Writing – review & editing, Writing – original draft, Formal analysis, Data curation. Mary Brooks: Writing – review & editing, Data curation. Suvi Neukam: Writing – review & editing, Data curation, Conceptualization. Lee E. Neilson: Conceptualization.
Funding
This work was supported by the Veterans Affairs (VA) Clinical Science Research and Development (CDA2 IK2 CX00253-01A1; Dr. Neilson) and the Parkinson’s Disease Research, Education, Clinical Center (PADRECC) at the VA Portland Health Care System.
Declaration of competing interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Footnotes
Supplementary data to this article can be found online at https://doi.org/10.1016/j.prdoa.2025.100337.
Appendix A. Supplementary data
The following are the Supplementary data to this article:
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