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Abstract

Parkinson’s Disease (PD) is a progressive neurological disorder marked by motor and non-motor symptoms. Deep Brain Stimulation (DBS) is a proven surgical treatment for advanced PD, yet access and utilization remain unequal—particularly along gender lines. Patient education plays a vital role in optimizing DBS outcomes and addressing these disparities. This review analyzes existing literature on educational practices related to DBS in PD, focusing on their impact on patient outcomes, engagement, and healthcare equity. It also examines the role of gender and the contributions of nursing staff in delivering education and support. While structured educational programs do not directly improve clinical outcomes, they significantly enhance patient satisfaction and informed decision- making. Tailored counseling and nurse-led psychoeducation reduce anxiety and address informational gaps. Gender disparities persist, with women less likely to undergo DBS, partly due to lack of awareness and biased referral patterns. Patient-centered education and psychoeducational interventions—particularly those led by nursing staff—are essential to improving care quality and satisfaction in DBS for PD. Addressing gender-based barriers and standardizing education delivery can promote more equitable and effective treatment outcomes.

Keywords

Deep Brain Stimulation Parkinson’s Disease Patient Education

1 Introduction

Parkinson’s Disease (PD) is a progressive neurodegenerative disorder primarily marked by the degeneration of dopaminergic neurons, leading to a characteristic triad of motor symptoms: tremor, rigidity, and bradykinesia. However, PD extends beyond motor impairments and encompasses a wide range of non-motor symptoms, including cognitive decline, sleep disturbances, and emotional dysregulation [1]. The prevalence of PD is rising rapidly, making it the fastest-growing neurological disorder. In the United States alone, over one million individuals are currently affected, with projections estimating an increase to approximately 1.2 million cases by 2030, largely driven by an aging population [2].

The management of PD involves a multidisciplinary therapeutic strategy, combining pharmacological treatments—most notably levodopa—with adjunctive interventions such as Deep Brain Stimulation (DBS). Additional supportive therapies, including physical, occupational, and speech therapy, play a critical role in alleviating symptoms, preserving function, and enhancing quality of life. Although levodopa provides substantial symptomatic relief initially, its therapeutic dosage window narrows with disease progression, often leading to complications such as motor fluctuations, dystonia, and dyskinesias, which significantly hinder disease management [3, 4]. Despite the breadth of current treatments, there remains a notable lack of disease- modifying therapies, highlighting a major unmet need in PD care [5].

DBS has emerged as a promising neuro- modulatory intervention, involving the surgical implantation of electrodes in targeted brain regions to deliver controlled electrical stimulation. It is particularly effective in advanced PD, offering substantial improvements in motor symptoms unresponsive to pharmacological therapy. Clinical studies report symptom resolution rates of 60–70% within the first-year post-implantation, with benefits often sustained over time [6, 7]. Beyond its motor effects, DBS has also shown positive impacts on non-motor symptoms such as mood, cognitive function, and sleep, collectively contributing to improved quality of life in patients with advanced PD [7].

Despite its clinical efficacy, the adoption of DBS is hindered by several challenges. Chief among these is the need for accurate patient selection and referral, as up to 30% of DBS failures are attributed to inappropriate referrals [8]. Moreover, discrepancies often arise between patients ‘preoperative expectations and the discussions held during clinical consultations, which may adversely affect postoperative outcomes and satisfaction [9]. Gender disparities further complicate access to DBS: women are less likely to be recommended for surgery, potentially due to subjective preferences, reluctance, or biases in the decision-making process. Notably, studies such as that by Jost et al. have revealed that women, despite having longer disease durations and more severe dyskinesias, are significantly underrepresented in DBS referrals and are 11% less likely than men to undergo surgery when clinically indicated [10].

To address these disparities, a multidisciplinary and patient-centered approach is essential—one that prioritizes education, informed decision- making, and advocacy. Enhancing awareness and understanding of DBS among patients could play a key role in promoting equitable access to this therapy. However, existing literature offers limited evaluation of the impact of patient education initiatives on DBS accessibility and outcomes [11]. This review aims to highlight disparities in DBS care and underscores the critical role of patient education and perioperative counseling in improving equity of access and postoperative quality of life.

In this perspective review, outcomes of interest include: (1) access-related outcomes (referral rates, proportion of eligible patients undergoing DBS); (2) objective clinical outcomes (UPDRS improvement, motor and non-motor effects, adverse events); (3) subjective outcomes (quality of life, psychological distress, patient satisfaction).

2 Methods

This article is a narrative perspective review with elements of systematic search, aimed at synthesizing the role of patient education as a means to address disparities in access to DBS and postoperative care in PD. The inclusion criteria encompass full-text articles written in English, spanning from 2000 to 2023, ensuring coverage of established practices and recent advancements in the field. To conduct a thorough literature search, various databases were utilized, including PubMed, EMBASE, Google Scholar, the Cochrane Library, and Scopus. Key search terms such as “DBS,” “PD,” and “patient education” were employed, along with terms related to healthcare disparities and access. In addition to database searches, manual searches of references cited in relevant reviews were conducted to identify additional sources. Rigorous exclusion criteria were applied, excluding abstracts, case reports, posters, and unpublished or non-peer-reviewed studies to maintain the reliability and quality of evidence included in the review. The review did not impose a predetermined limit on the number of studies to be included, aiming for a comprehensive understanding of the role of patient education in DBS access and postoperative care in PD. Various study designs were considered, including descriptive studies, cohort studies, and observational studies, providing insights from both pre-clinical and clinical settings. Figure 1 summarizes the methodology employed in this review, outlining the systematic approach to literature selection and analysis to elucidate the significance of patient education in optimizing DBS outcomes and addressing healthcare disparities in PD management.

Figure 1

Summary of Methodology for this Review and flowchart of study selection for inclusion in the review.

3 Review

3.1 Principles of Deep Brain Stimulation and Patient Selection Criteria

Deep Brain Stimulation (DBS) is a therapeutic modality involving the continuous delivery of electrical impulses to specific brain regions via precisely implanted electrodes. It is postulated to exert its therapeutic effects by modulating both local and widespread electrical and neurochemical activity, thereby influencing oscillatory dynamics, enhancing synaptic plasticity, offering neuroprotective effects, and promoting neurogenesis – neuroprotective effects remain controversial; early preclinical studies suggested benefits, but clinical translation is uncertain [12 –15 ]. Unlike ablative procedures, DBS represents a minimally invasive neuromodulatory approach that preserves brain tissue integrity, allows for individualized treatment through parameter adjustments, and offers the potential for reversibility [16].

The subthalamic nucleus (STN) is the primary and most widely accepted target for DBS, considered the gold standard. However, the globus pallidus internus (GPi) serves as an important alternative, particularly in patients with certain motor complications or intolerance to STN stimulation. The GPi plays a pivotal role in modulating thalamic output and motor control [17].

Pre-surgical planning for DBS relies heavily on advanced computational models that simulate neural circuits and predict the effects of stimulation on targeted pathways. These models help optimize electrode placement and tailor stimulation parameters—such as frequency, amplitude, and pulse width—to the individual patient’s profile, minimizing side effects. The surgical procedure is performed under general anesthesia using a stereotactic head frame to ensure precise electrode placement, guided by neuroimaging techniques such as MRI or CT scans. Electrodes are inserted into the targeted brain region and connected to a pulse generator, implanted subcutaneously in the chest or abdomen, which delivers programmed electrical impulses. Postoperatively, a neurologist gradually activates and fine-tunes the system to achieve optimal symptom control, closely monitoring patient responses and adjusting parameters as needed [18].

Selecting appropriate candidates for DBS in Parkinson’s disease (PD) is essential for maximizing outcomes. Ideal candidates are those with significant motor fluctuations (“on-off” states) or levodopa-induced dyskinesias not adequately managed by optimized medical therapy [7]. A favorable response to levodopa, indicating dopaminergic responsiveness, further strengthens the candidacy for DBS [19, 20]. In contrast, patients with significant cognitive decline or severe comorbidities are generally excluded [18]. A multidisciplinary approach—encompassing neurologists, neurosurgeons, and other healthcare professionals—is crucial in the selection process. The criteria for patient selection are summarized in Table 1.

Table 1

Patient Selection Criteria for Deep Brain Stimulation in Parkinson’s Disease

Inclusion Criteria	Exclusion Criteria	Supportive Criteria
Diagnosis of Idiopathic PD [8]	Uncontrolled psychiatric illness (Severe mood disorders, Psychosis) [19]	Age<69 [18]
Response to Levodopa (>30% improvement of UPDRS III score) [19]	Severe Cognitive Decline [18]	Realistic expectations from the procedure [19]
Intolerance of medication adverse effects (L-DOPA-induced Dyskinesias) [8]	Severe Medical Comorbidities limiting the quality of life more than Parkison’s [18]	Patient’s motivation [19]
Medically intractable Motor fluctuations, Intractable tremors [8]	Not available	Not available

3.2 Post-Deep Brain Stimulation Evaluated Outcomes

DBS provides substantial short-term relief of core motor symptoms in PD, such as tremor, rigidity, and bradykinesia [21]. Patients often experience prolonged “on” periods, reduced “off” time, and improved mobility and independence [22]. Nonetheless, the procedure is not devoid of risks, including surgical complications, infections, and hardware-related issues [21]. Other frequently reported adverse effects include paresthesias, involuntary muscle contractions, disturbances in balance and gait, speech difficulties, cognitive decline, and mood changes such as depression or apathy [23]. Importantly, some patients experience insufficient improvement despite optimal electrode placement, underscoring the variability of response and the importance of careful patient selection.

In the long term, DBS continues to offer significant benefits. Studies report sustained reductions in Unified Parkinson’s Disease Rating Scale (UPDRS) scores, with improvements in motor function lasting several years [21, 24]. For instance, Krack et al. documented a 66% improvement at one year, with 54% of the benefit maintained after five years [21]. Similarly, Castrioto et al. reported a 25.3% reduction in the overall motor score, with specific reductions of 85% in resting tremor, 87.5% in action tremor, and 23.1% in bradykinesia over ten years [24]. The study had a small sample size (n=18) and potential attrition bias, as patients with less favorable outcomes may have dropped out.

DBS also enhances long-term quality of life, primarily through the alleviation of motor symptoms, increased independence, and reduced reliance on dopaminergic medications, thereby lowering the risk of medication-induced side effects [22]. However, some patients may experience diminishing efficacy over time or the emergence of psychiatric symptoms, such as depression or apathy [6].

3.3 Gaps in access to Deep Brain Stimulation and the potential of patient education in bridging them

3.3.1 Patient Selection and Decision-making Process

Appropriate patient selection is critical to ensuring favorable DBS outcomes. Alarmingly, over 30% of DBS failures are linked to inappropriate referrals [8]. A recent multinational survey of DBS practices in the Americas revealed significant variability in patient selection criteria: 22% of centers performed DBS without a minimum disease duration threshold, and 7.5% did not require formal neuropsychological assessments before surgery—an essential step in evaluating cognitive risk. Furthermore, only 42.4% of centers adhered to a standardized follow-up schedule post-surgery, highlighting the lack of uniformity in practice [25]. Such inconsistencies may lead to the selection of patients at early disease stages, who may derive limited benefit from the intervention.

Another key barrier is patient reluctance. Despite careful selection, only 28% of eligible patients ultimately consent to surgery, often due to uncertainty or unrealistic expectations— frequently influenced by media or anecdotal reports [26]. Therefore, comprehensive preoperative education is paramount. Knoop et al. found that while over 96% of patients recalled receiving information from PD specialists, only 61% remembered receiving details from neurosurgeons—a gap likely due to limited preoperative interaction. Addressing this shortfall is crucial, particularly given the neurosurgeon’s role in managing surgical complications, including infections [9].

3.3.2 Gender Disparities in Undergoing Deep Brain Stimulation Care

Gender disparities in DBS access remain a pressing concern. Although PD affects men and women equally, men are twice as likely to undergo DBS [27]. In Setiawan et al.’s study, women represented only 31% of DBS referrals. This trend is consistent across multiple studies, with underrepresentation of women and a higher tendency to decline surgery due to personal concerns [28 –30 ]. Hamberg et al. further revealed gender-specific decision-making patterns: women were more likely to express concerns about complications and to seek advice from their social networks before deciding on DBS [31].

Importantly, these differences are not solely attributable to structural barriers of access, but also reflect gender-specific ways of evaluating risks and benefits. Literature indicates that women may exhibit a lower tolerance for surgical risk and a heightened concern for potential complications, which directly influences their decision-making. In contrast, men are often more inclined to weigh potential motor improvements more heavily than surgical risks. Sociocultural factors further shape these patterns: women frequently bear greater caregiving responsibilities within the family, rely more strongly on advice from their social networks, and may be influenced by cultural perceptions that discourage elective brain surgery.

Improving the quality and reach of patient education—especially in the physician-patient dialogue—may help reduce these disparities. Targeted community outreach and better inclusion of women in the decision-making process are essential to achieving more equitable access to care.

3.3.3 Influence of Perioperative Patient Education in Social Maladjustment and Psychological Care Post Deep Brain Stimulation

Although DBS significantly improves motor function, it may be associated with psychological maladjustment in approximately one-third of patients [32]. Patients often experience negative changes in personality and self-image, which can impair quality of life and social relationships [33 –35 ]. These issues are frequently linked to the “burden of normality syndrome,” a phenomenon where patients struggle with the psychological transition from chronic illness to post-treatment expectations. Unrealistic preoperative expectations are a major contributor to postoperative dissatisfaction [32]. Breit et al. emphasized how unmet goals can undermine DBS outcomes, particularly when expectations exceed the likely benefits [36].

Figure 2 outlines the principal barriers to DBS access and underscores the role of patient education in addressing these challenges.

Figure 2

Overview of gaps in Deep Brain Stimulation access and the pivotal role of patient education.

4 Discussions and Prospects for Further Integration of Patient Education in Perioperative Counseling for Deep Brain Stimulation

4.1 Effectiveness of Patient Education Resources

Patient education resources are crucial in equipping individuals with Parkinson’s Disease (PD) and their families with the knowledge necessary to make informed decisions about Deep Brain Stimulation (DBS). Understanding these aspects empowers patients to take an active role in their treatment journey. Comprehensive, well-structured information from healthcare providers enables patients to weigh the benefits and risks of DBS in alignment with their values and preferences.

Dinkelbach et al. found that approximately 78% of patients deemed educational resources helpful, with a significant correlation to informed decision-making [25]. Similarly, Salinas et al. explored patient preferences for educational formats, highlighting the importance of a multimodal approach. Among surveyed patients, electronic video materials (13.7%) and reading materials (20.0%) were moderately popular, while more traditional formats such as annual symposia (20.0%) and lunch lectures (28.4%) remained most favored [37].

Providing realistic expectations is vital to managing patient perceptions—clarifying that while DBS can significantly improve motor symptoms, it is not a cure [38]. Patients should also be informed about potential complications, such as infection, hemorrhage, or device-related issues. Since DBS systems often require ongoing adjustment due to disease progression, the long-term nature of management should be emphasized to maintain patient engagement.

Personal narratives and peer support further enhance educational efforts, fostering a sense of community. Organizations such as Parkinson’s UK, Stanford Parkinson’s Community Outreach, and Medtronic offer valuable content and support tools to guide patients and families throughout the DBS process. Leveraging such resources improves decision-making and helps patients better navigate the complexities of treatment options.

4.2 Utilization of Online Resources and Community Support and Their Integration into Pre-operative Process

Beyond printed booklets, online resources like DBS and Me provide accessible, comprehensive tools that empower patients considering DBS [39]. These platforms offer several advantages, including around-the-clock accessibility and interactive features that allow for personalized learning and decision-making [40].

Online communities also play a pivotal role by connecting patients with others who have undergone DBS, thereby providing emotional support and shared lived experiences. Virtual educational sessions can cover a range of topics—from device implantation and recovery expectations to lifestyle changes—making them convenient and practical for patients preparing for surgery.

Digital tools also enhance shared decision- making among patients, families, and clinicians. Interactive platforms present treatment options with associated pros and cons, facilitating informed conversations. Digital consent forms and preoperative health questionnaires further streamline the process, ensuring that clinicians receive comprehensive patient data for individualized treatment planning.

In line with findings from the CARE Monitor study and preselection tools like STIMULUS, incorporating robust patient education into preoperative DBS counseling significantly improves outcomes [26]. A systematic review by Mameli et al. underscored the importance of setting realistic expectations to enhance post-treatment satisfaction [41]. Tools such as the DBS-Edmonton app enable patients to align expectations with their specific symptoms and reported greater satisfaction post-DBS (p = 0.014) [42]. Although further validation in larger cohorts is needed, such apps represent promising advances in patient- centered education and decision-making.

4.3 Providing Training for Healthcare Professionals and Addressing Disparities in Access and Education

Inconsistent dissemination of information often leads to disparities in patient knowledge, impeding informed decision-making [25, 43]. Addressing this requires targeted training programs for healthcare professionals, focusing on clear, compassionate communication specific to DBS. These programs should enhance clinicians’ ability to explain complex concepts and adapt their messaging to diverse audiences [44].

Mahajan et al.’s 2021 global survey highlighted the benefits of standardized protocols—including minimum disease duration requirements, neuropsychological assessments, and structured follow-up—to improve outcomes [26].

Salinas, in Know DBS, emphasized how demographic variables such as age, education, and disease duration influence patients’ understanding of DBS [45]. Tailoring communication to the patient’s educational background is key. Patients with lower educational attainment may benefit from simplified explanations, while those with higher education may appreciate more detailed information. Effective communication also involves active listening and addressing biases, including gender and cultural considerations.

Thus, training must go beyond factual instruction and encompass empathy, awareness of disparities, and the ability to personalize information—ensuring equitable access to DBS education across diverse populations.

4.4 Addressing Gender Disparity and Improving Deep Brain Stimulation Access for Women with Parkinson’s Disease

Addressing gender disparities is essential for equitable DBS access and outcomes [10]. Women with PD often face unique barriers that limit their access to surgical treatment. Targeted education is vital to ensure women are informed about DBS and its implications for symptom management and quality of life.

Additionally, research must increasingly incorporate gender-specific data to better understand outcomes for women undergoing DBS [46]. This includes ensuring that diverse socioeconomic and ethnic groups are represented in studies. Healthcare professionals must also receive training in gender-sensitive communication to address specific concerns that may be more prevalent among female patients [46].

Socioeconomic barriers—particularly among marginalized communities—often hinder access. These can be mitigated through financial assistance, improved insurance coverage, and greater awareness of supportive resources [47]. Establishing support networks tailored to women with PD offers a safe space for information- sharing and community support.

Beyond financial and systemic inequities, gender roles and cultural expectations play a critical role. Women are more frequently caregivers for spouses, children, or elderly relatives, and this responsibility can discourage them from prioritizing their own health or pursuing surgical options. In addition, studies suggest that women with PD may be less likely to accept the perceived risks of brain surgery compared with men, reflecting both personal attitudes and cultural norms around surgery. Healthcare professionals trained in gender-sensitive communication are better equipped to recognize these barriers, address fears related to surgical risk and provide balanced information that empowers informed decision-making.

Initiatives like the Parkinson’s Foundation’s Women and PD TALK PCORI project provide valuable frameworks to address the specific needs of women with PD [47]. Future research should explore the unique decision-making processes among female patients, enabling the development of targeted interventions that close the gender gap in DBS accessibility [10].

4.5 Encouraging Non-Physician Led Patient Education and Psychoeducation Programs

Non-physician professionals—particularly nurses— play a critical role in DBS-related patient education. Elaine & Susan advocate a dual approach combining standardized materials with per- sonalized guidance [48]. Standardized resources ensure consistent delivery of key information, while personalized education fosters engagement and addresses individual concerns.

Allied health professionals, including occupational, speech, and physical therapists, further support patient education by providing tailored guidance on rehabilitation and functional recovery. Social workers can assist in navigating emotional challenges, caregiver stress, and post- operative adjustments, ensuring a more holistic approach to DBS care [49].

A study evaluating the effects of perioperative psychoeducation found that, at one year post-DBS, only 2 out of 7 patients in the psychoeducation group exhibited aggravated social adjustment, compared to 8 out of 10 in the usual care group [32]. At two years, just one psychoeducation patient experienced continued difficulties, underscoring the potential long-term benefits of such programs. The same study also reported improved anxiety (p = 0.038), depression (p = 0.050), and coping (p = 0.050) scores in the psychoeducation group [32].

Despite progress, disparities in DBS-related education persist, particularly among racial and socioeconomically diverse populations. Ongoing research is needed to assess these gaps and develop targeted interventions that ensure equitable access to information—ultimately enabling all patients to make empowered, informed decisions.

5 Conclusion

Figure 3 summarizes the main discussion points and prospects for further integration of patient education into perioperative counseling for DBS. Given the complex nature of PD, modern care models have evolved from one-on-one physician- patient relationships to multidisciplinary collaborations involving neurologists, PD nurse specialists, GPs, physiotherapists, and speech therapists. This review underscores the central role of patient education in shaping outcomes after DBS. While DBS is a significant advancement for treatment-resistant PD, a disconnect remains between patient expectations and clinical results, often affecting satisfaction.

Figure 3

Summary of Discussions and Prospects for Further Integration of Patient Education in Perioperative Counseling for Deep Brain Stimulation.

Bridging this gap requires enhancing patient understanding, setting realistic expectations, and delivering education through a holistic, patient-centered lens. Standardized protocols, inclusive communication, community engagement, and digital tools must be leveraged to empower all patients—ensuring that DBS decisions are made with confidence and clarity.

Footnotes

Acknowledgements

The authors thank all colleagues who provided helpful discussions and feedback during the preparation of this manuscript. No contributors beyond the listed authors were involved in the writing or development of the article.

Funding Information

None.

Author Contribution

Simone Laguardia: conceptualization, methodology, investigation, data curation, writing original draft, writing review and editing, visualization, project administration; Omer M. Mohammed: conceptualization, methodology, investigation, data curation, writing original draft, writing review and editing, visualization, project administration.

Declaration of Conflicting interests

The authors declare no conflict of interest.

Data Availability Statement

No new data were created or analyzed in this study. Data sharing is not applicable to this article.

Ethics Statement

Not applicable. This article is a perspective review and does not involve human participants, animals or sensitive data.

Informed Consent

Not applicable. No individual-level data or identifiable information are included in this article.

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Improving Access to Deep Brain Stimulation and Postoperative Outcomes in Parkinson’s Disease through Patient Education: A Perspective Review

Abstract

Keywords

1 Introduction

2 Methods

3 Review

3.1 Principles of Deep Brain Stimulation and Patient Selection Criteria

3.2 Post-Deep Brain Stimulation Evaluated Outcomes

3.3 Gaps in access to Deep Brain Stimulation and the potential of patient education in bridging them

3.3.1 Patient Selection and Decision-making Process

3.3.2 Gender Disparities in Undergoing Deep Brain Stimulation Care

3.3.3 Influence of Perioperative Patient Education in Social Maladjustment and Psychological Care Post Deep Brain Stimulation

4 Discussions and Prospects for Further Integration of Patient Education in Perioperative Counseling for Deep Brain Stimulation

4.1 Effectiveness of Patient Education Resources

4.2 Utilization of Online Resources and Community Support and Their Integration into Pre-operative Process

4.3 Providing Training for Healthcare Professionals and Addressing Disparities in Access and Education

4.4 Addressing Gender Disparity and Improving Deep Brain Stimulation Access for Women with Parkinson’s Disease

4.5 Encouraging Non-Physician Led Patient Education and Psychoeducation Programs

5 Conclusion

Footnotes

Acknowledgements

Funding Information

Author Contribution

Declaration of Conflicting interests

Data Availability Statement

Ethics Statement

Informed Consent

References