Know DBS: patient perceptions and knowledge of deep brain stimulation in Parkinson's disease.

Introduction: Deep brain stimulation (DBS) is an established therapy for Parkinson's disease (PD) that can significantly improve motor symptoms and quality of life. Despite its effectiveness, little is known about patient perceptions of DBS. Objectives: To evaluate patient perceptions of DBS for PD, focusing on understanding, satisfaction, and factors influencing their outlook. This study aims to enhance patient education and counseling by identifying key determinants of patient perceptions. Design: A patient survey. Methods: We surveyed 77 PD patients who had undergone DBS at multiple centers using a comprehensive questionnaire. The questionnaire included questions on demographic information, disease history, and detailed understanding about the indications for DBS, side effects, outlook, and other common misconceptions. We summarize data using measures of central tendency and dispersion appropriate to the data type (categorical, continuous, proportional) and model relationships among variables using fractional and linear regression methods. Results: Participants had a median age of 66 years, were predominantly male (66%), Caucasian (90%), well-educated (79% with at least college degrees), and had a disease duration of greater than 5 years (97%). They conveyed good understanding of the signs and symptoms addressed by DBS across the motor and non-motor domains and associated side effects. Regression analysis identified age, disease duration, and education level as key determinants of patient understanding and outlook of DBS. Conclusion: Our study provides a detailed understanding of patient perceptions of DBS for PD, including the benefits, challenges, and misconceptions. Our findings underscore the importance of identifying the causes of disparities in patient knowledge and perceptions regarding DBS to tailor patient counseling and ensure optimal treatment outcomes.

Pain and quality of life in persons with spinal cord injury: Mediating effects of mindfulness, self-efficacy, social support, and functional independence.

OBJECTIVE: To identify mediating roles of mindfulness, self-efficacy, social support, and functional independence in the relationship between pain and quality of life (QOL) in persons with spinal cord injury (SCI). METHODS: A cross-sectional descriptive study was conducted using a sample of 272 persons with SCI living in the United States. The participants completed self-report standardized questionnaires on a Qualtrics survey. A parallel mediation analysis adjusting for covariates was performed to test the hypotheses. RESULTS: Findings showed significant direct effects of pain on functional independence, self-efficacy, mindfulness, and social support. Self-efficacy, mindfulness, and social support had significant direct effects on QOL. In the mediation analysis, mindfulness, self-efficacy, and social support significantly mediated the relationship between pain and QOL, controlling for other variables in the model. CONCLUSIONS: This study adds to the extant literature by providing evidence that mindfulness, self-efficacy, and social support not only directly contribute to QOL but are likely to mitigate the negative effect of pain on QOL in persons with SCI. Identifying these potential factors that can assuage the adverse effects of pain on QOL is a first step toward active intervention to facilitate the adjustment of persons with SCI.

Staying hidden: The burden of stigma in PD.

BACKGROUND: Despite the myriad motor and non-motor challenges associated with Parkinson's disease (PD) diagnosis, the hidden issue of stigma may be among the most influential factors negatively affecting quality of life. A number of qualitative studies have been published assessing various aspects of stigma in PD, and quantitative studies assert that most people with PD experience stigma during the course of their disease. Stigma is associated with poorer mental and physical health, poorer quality of life, decreased levels of hope, self-esteem and self-efficacy. The resulting stigma can lead to social anxiety and isolation, reluctance to seek medical care, loneliness, depression and anxiety. Therefore, understanding what stigma is, where it comes from, and how it affects people living with PD may offer clinicians and care partners tools to help mitigate the negative effects. FOCUS: Over the past few decades, we have seen a move away from simply focusing on the effects of a disease (medical model) toward a holistic biopsychosocial approach that considers the role of environmental factors (stigma) when assessing overall well-being. We review some proactive practical suggestions to help people living with PD effectively combat the negative effects of stigma. CONCLUSION: The additional hidden burden of stigma from PD affects quality of life. Having a better understanding of the role of stigma and its impact may allow clinicians to provide proactive care and greater empathy for those living with the challenges of this disease.

Early-onset Parkinson's disease: An assessment of unmet psychosocial needs.

BACKGROUND: Early onset Parkinson's disease (EOPD) affects people in the prime of their lives, typically between 21 and 50 years of age, which results in a variety of challenges that are unique compared to those diagnosed later in life. A better understanding of the unmet needs of this population is critical to delivering bespoke care and improving their quality of life. OBJECTIVES: To assess the unmet needs of people with early onset Parkinson's disease. METHODS: A cross-sectional sample of 198 adults with self-identified early onset Parkinson's disease completed surveys to ascertain the most common unmet needs of this population. Simple descriptive statistics including frequencies, means, and standard deviations were used to quantify the most common unmet needs and were compared between men, women, and Hispanic/Latino with significance determined by chi-square tests. RESULTS: Overall, the top five unmet needs were (1) need for "a community more like me" (65.2%), (2) more PD information (48%), (3) information about how their PD will progress (47%), (4) help with mental health issues (34.8%), and (5) help with employment issues (33.8%). The top unmet need for men was help with employment issues (50.8%), for women, "a community more like me" (72.3%), and for Hispanic/Latinos, more PD information (47%). CONCLUSION: Although the number of people living with EOPD is considerably smaller than those with conventional age at onset, the potential impact to quality of life in this population remains tremendous. We propose a framework to start to address these needs.

A Wellness Prescription for Parkinson's: Mid to Late-Stage Disease.

The mid- to late-stages of Parkinson's disease (PD) bring increasing disability that may challenge independence and lower quality of life. Many people with PD struggle to remain hopeful and cope with an uncertain future due to the progression of the disease. Although disability in PD is due chiefly to motor impairment, nonmotor symptoms and psychosocial distress are also major contributors that are amenable to treatment. Interventions that address nonmotor symptoms and psychosocial distress can improve daily function and quality of life even as motor function worsens with disease progression. This manuscript proposes a patient-centered, proactive strategy to promote psychosocial adaptation to decrease the impact of motor, nonmotor, and psychosocial distress on quality of life and function in people with PD.

A Prescription for Wellness in Early PD: Just What the Doctor Ordered.

BACKGROUND: Being diagnosed with a neurodegenerative disease is a life-changing event and a critical time to help patients cope and move forward in a proactive way. Historically, the main focus of Parkinson's disease (PD) treatment has been on the motor features with limited attention given to non-motor and mental health sequelae, which have the most impact on quality of life. Although depression and anxiety have been described at the time of PD diagnosis, demoralization, intolerance of uncertainty, decreased self-efficacy, stigma and loneliness can also present and have negative effects on the trajectory of the disease. Hence, understanding the psychological impact of the diagnosis and how to provide better counselling at this critical time point may be the key to a better long-term trajectory and quality of life. FOCUS: There has been a paradigm shift in the treatment of chronic illness moving beyond the medical model, which focuses on fighting illness with the physician being in charge of the treatment process and the patient being the passive recipient, toward a more holistic (i.e., physical, psychological, social, and spiritual health) biopsychosocial approach that emphasizes behavioral factors with the patient being an active collaborator in their treatment. Hence, we propose that fostering resilience, social support, and psychological flexibility offer promise toward attenuating negative reactions and improving overall well-being. CONCLUSION: Through a proactive wellness approach incorporating lifestyle choices, people with PD (PwP) can not only achieve improved states of health, well-being, and quality of life, but actually thrive.

Childhood Trauma and Parkinson Disease: Associations of Adverse Childhood Experiences, Disease Severity, and Quality of Life.

Background and Objectives: Childhood trauma has been shown to be associated with adverse health outcomes that can last a lifetime. The effects of trauma have not been evaluated in a Parkinson disease (PD) population. The goal of this study was to survey individuals with PD to evaluate whether the intensity of childhood trauma is associated with individual symptoms, overall disease severity, or quality of life. Methods: An Internet-based observational survey was designed to evaluate modifiable variables associated with PD progression. In this cross-sectional analysis, adverse childhood experiences (ACEs) were used as a measure of childhood trauma, patient-reported outcomes in PD for the primary measure of PD severity, and Patient-Reported Outcomes Measurement Information System (PROMIS) Global for quality of life (QoL). Results: Seven hundred twelve of 900 participants (79%) responded to the questions related to childhood trauma. Among respondents, QoL decreased as incidence of childhood trauma increased. Individuals with ACE scores 4 or higher reported greater symptom severity for 45% of the variables tested, including apathy, muscle pain, daytime sleepiness, restless leg syndrome, depression, fatigue, comprehension, and anxiety (p < 0.05) compared with individuals with trauma scores of zero. Discussion: These data suggest childhood trauma is associated with a mild increase in overall patient-reported PD severity, specifically mood and other nonmotor and motor symptoms. While the associations were statistically significant, the impact of trauma was less robust than previously described predictors of severity, such as diet, exercise, and social connection. Future research should attempt to include more diverse populations, attempt to improve the response rate of these sensitive questions, and, most importantly, determine whether the adverse outcomes associated with childhood trauma can be mitigated with lifestyle modification, psychosocial support, and intervention in adulthood.

Resilience as a Moderator in the Relationship between Disability Related Stress and Community Participation in Individuals with Multiple Sclerosis.

Resilience can be defined as one's ability to maintain or return to relatively stable psychological and physical functioning despite stressful life events and adversity. For people with multiple sclerosis (MS), building resilience has been shown to contribute to enhanced positive rehabilitation and mental health outcomes. However, there is no literature examining the role of resilience influencing the relationship between disability-related stress and community participation in individuals with MS. The present study aimed to examine the moderating role of resilience between disability-related stress and community participation among people with MS. Our findings suggested that the effect of disability-related stress on community participation was influenced by resilience. Interventions targeting resilience may help individuals effectively cope with MS and increase community participation in meaningful life situations.

The association between hope and employment among individuals with multiple sclerosis: A hierarchical logistic regression model.

BACKGROUND: Most people with multiple sclerosis (MS) are employed at the time of their diagnosis; however, due to the unpredictable nature of MS, most exit the workforce shortly thereafter. A plethora of research has examined factors that negatively affect employment outcomes for people with MS. However, little is known about how hope, a modifiable positive psychology factor, affects employment. OBJECTIVE: This study examined the role of hope and its association with employment outcomes for people with MS. METHODS: Two-hundred and fifty-five adults with MS (mean ± SD age, 45.45 years ± 10.28) completed surveys about their MS, employment, disability-related stress, and hope. A three-step hierarchical logistic regression was conducted to examine the extent to which hope explains the variance in employment, over and above demographic and disability related covariates. RESULTS: The final model explained 28% of the variance in employment, suggesting that the model was able to distinguish people with MS who were employed versus those who were unemployed. Higher levels of hope were associated with an increased probability of being employed (OR = 4.65; 95% CI [1.98, 10.92]). CONCLUSION: This study supports that hope is associated with favorable employment outcomes for people with MS. Persons with MS may benefit from working with rehabilitation professionals to enhance their hope, and this study provides a foundation for the development of hope-based interventions to improve employment outcomes among this population.

The relationship between meaning in life and apathy in people with Parkinson's disease: a cross-sectional analysis.

BACKGROUND: Apathy remains a common and problematic neuropsychiatric feature associated with Parkinson's disease resulting in reductions in health-related quality of life, and effective treatments remain elusive. Meaning in life (MIL) has been implicated in a variety of positive health outcomes, and this study assesses the relationship between apathy and MIL while hoping to identify a potential new interventional target. METHODS: A cross-sectional sample of 237 PwPD completed surveys to evaluate MIL and a variety of non-motor symptoms (NMS), and a hierarchical regression analysis was conducted to evaluate relationships of interest. RESULTS: Correlational analysis indicated the presence of meaning in life was statistically negatively and moderately to strongly correlated with apathy (r = - 0.60, p < .001). Hierarchical regression analysis results showed that presence of meaning in life explained a total of 48% of variance in apathy. More specifically, the presence of meaning in life (ß = - 0.43, p < .001) was associated with apathy after controlling for sociodemographic and other potentially confounding variables. CONCLUSIONS: This study demonstrates the significant negative relationship between MIL and apathy. Considering the lack of effective treatments for apathy, which is one of the most disabling symptoms affecting PwPD, identifying a potential target for intervention is exciting. MIL has the potential to offer clinicians a novel intervention to provide a much-needed treatment option to improve both apathy and HRQoL.

Social isolation, loneliness and mental health sequelae of the Covid-19 pandemic in Parkinson's disease.

People living with Parkinson Disease (PwP) have been at risk for the negative effects of loneliness even before the Coronavirus Disease 2019 (Covid-19) pandemic. Despite some similarities with previous outbreaks, the Covid-19 pandemic is significantly more wide-spread, long-lasting, and deadly, which likely means demonstrably more negative mental health issues. Although PwP are not any more likely to contract Covid-19 than those without, the indirect negative sequelae of isolation, loneliness, mental health issues, and worsening motor and non-motor features remains to be fully realized. Loneliness is not an isolated problem; the preliminary evidence indicates that loneliness associated with the Covid-19 restrictions has dramatically increased in nearly all countries around the world.

Evaluating the Psychometric Properties of the Psychological Capital Questionnaire (PCQ) in Patients with Parkinson's Disease.

BACKGROUND: Positive personality resources have demonstrated the ability to positively impact health outcomes. OBJECTIVE: To examine the psychometric properties of the original Psychological Capital Questionnaire (PCQ-24) in patients with Parkinson's disease (PD). METHODS: A sample of 114 individuals with PD completed the PCQ-24, and via a latent factor modeling framework exploratory and confirmatory factor analyses were conducted to evaluate the psychometric properties in people with PD. RESULTS: Exploratory factor analysis (EFA) revealed that both the efficacy and hope scales were reliable (Cronbach's alpha = 0.87 and 0.86, respectively) and had statistically acceptable validity with strong factor loadings all above the practical threshold of 0.60. The resilience and optimism scales were also reliable (Cronbach's alpha = 0.78 and 0.73, respectively) but had only moderately acceptable validity in part due to three reverse-scored items (i.e., No. 13, 20, & 23) with weak factor loadings of 0.26, 0.46, and 0.50, respectively. After excluding these at-risk items, the overall factor loadings for resilience and optimism were significantly improved at the acceptable above 0.60. The CFA results confirm a statistically acceptable model fit for the modified version (only 21-items) of the PCQ in the PD sample. CONCLUSION: Both EFA and CFA analyses provide statistical evidence supporting the modified PCQ version and demonstrate better test validity and reliability for the PD population. The refined PCQ form is both effectively shorter and psychometrically superior to the original and has promise in investigating health outcomes in people with PD.

A Population-Based Investigation of Health-Care Needs and Preferences in American Adults With Multiple Sclerosis.

BACKGROUND: Comprehensive and effective multiple sclerosis (MS) health care requires understanding of patients' needs, preferences, and priorities. OBJECTIVE: To evaluate priorities of patients with MS for their MS care. METHODS: Participants included 3003 Americans with MS recruited through the National MS Society and the North American Research Committee on Multiple Sclerosis patient registry. Participants completed a comprehensive questionnaire on aspects of their health-care experiences. RESULTS: Participants identified the top 3 health-care priorities as (1) the affordability of MS health care, (2) ensuring that non-MS health-care providers have more education about MS and how it can interact with other conditions, and (3) access to an MS center or specialized MS clinic with MS health-care professionals together in one place. Participants receiving care in an MS center rated the quality and their satisfaction with care higher than those receiving care in other settings. Although having the opportunity to evaluate their health-care quality was important to the participants, only 36.4% had been provided the opportunity in the past year. CONCLUSIONS: This study identifies health-care priorities and concerns for Americans with MS.