Reward and Punishment Learning as Predictors of Cognitive Behavioral Therapy Response in Parkinson's Disease Comorbid with Clinical Depression.

Depression is highly comorbid among individuals with Parkinson's Disease (PD), who often experience unique challenges to accessing and benefitting from empirically supported interventions like Cognitive Behavioral Therapy (CBT). Given the role of reward processing in both depression and PD, this study analyzed a subset (N = 25) of participants who participated in a pilot telemedicine intervention of PD-informed CBT, and also completed a Reward- and Punishment-Learning Task (RPLT) at baseline. At the conclusion of CBT, participants were categorized into treatment responders (n = 14) and non-responders (n = 11). Responders learned more optimally from negative rather than positive feedback on the RPLT, while this pattern was reversed in non-responders. Computational modeling suggested group differences in learning rate to negative feedback may drive the observed differences. Overall, the results suggest that a within-subject bias for punishment-based learning might help to predict response to CBT intervention for depression in those with PD.Plain Language Summary Performance on a Computerized Task may predict which Parkinson's Disease Patients benefit from Cognitive Behavioral Treatment of Clinical DepressionWhy was the study done? Clinical depression regularly arises in individuals with Parkinson's Disease (PD) due to the neurobiological changes with the onset and progression of the disease as well as the unique psychosocial difficulties associated with living with a chronic condition. Nonetheless, psychiatric disorders among individuals with PD are often underdiagnosed and likewise undertreated for a variety of reasons. The results of our study have implications about how to improve the accuracy and specificity of mental health treatment recommendations in the future to maximize benefits for individuals with PD, who often face additional barriers to accessing quality mental health treatment.What did the researchers do? We explored whether performance on a computerized task called the Reward- and Punishment-Learning Task (RPLT) helped to predict response to Cognitive Behavioral Therapy (CBT) for depression better than other predictors identified in previous studies. Twenty-five individuals with PD and clinical depression that completed a 10-week telehealth CBT program were assessed for: Demographics (Age, gender, etc.); Clinical information (PD duration, mental health diagnoses, levels of anxiety/depression, etc.); Neurocognitive performance (Memory, processing speed, impulse control, etc.); and RPLT performance.What did the researchers find? A total of 14 participants significantly benefitted from CBT treatment while 11 did not significantly benefit from treatment.There were no differences before treatment in the demographics, clinical information, and neurocognitive performance of those participants who ended up benefitting from the treatment versus those who did not.There were, however, differences before treatment in RPLT performance so that those individuals that benefitted from CBT seemed to learn better from negative feedback.What do the findings mean? Our results suggest that the CBT program benefitted those PD patients with clinical depression that seemed to overall learn best from avoiding punishment rather than obtaining reward which was targeted in CBT by focusing on increasing engagement in rewarding activities. The Reward- and Punishment-Learning Task hence may be a useful tool to help predict treatment response and provide more individualized recommendations on how to best maximize the benefits of psychotherapy for individuals with PD that may struggle to connect to mental health care. Caution is recommended about interpretating these results beyond this study as the overall number of participants was small and the data for this study were collected as part of a previous study so there was no opportunity to include additional measurements of interest.

Minor Phenomena in Parkinson's Disease-Prevalence, Associations, and Risk of Developing Psychosis.

BACKGROUND: Minor phenomena, including passage phenomena, feeling of presence, and illusions, are common and may represent a prodromal form of psychosis in Parkinson's disease (PD). We examined the prevalence and clinical correlates of minor phenomena, and their potential role as a risk factor for PD psychosis. METHODS: A novel questionnaire, the Psychosis and Mild Perceptual Disturbances Questionnaire for PD (PMPDQ), was completed by Fox Insight cohort participants with and without PD. Additional assessments included the Non-Motor Symptoms Questionnaire (NMSQuest), REM Sleep Behavior Disorder Single Question Screen (RBD1Q), Movement Disorder Society-Unified Parkinson Disease Rating Scale Part II, demographic features, and medication usage. For participants with PD, we used regression models to identify clinical associations and predictors of incident psychosis over one year of follow-up. RESULTS: Among participants with PD (n = 5950) and without PD (n = 1879), the prevalence of minor phenomena was 43.1% and 31.7% (P < .001). Of the 3760 participants with PD and no baseline psychosis, independent correlates of minor phenomena included positive responses on the NMSQuest apathy/attention/memory (OR 1.7, 95% CI 1.3-2.1, P < .001) or sexual function domain (OR 1.3, 95% CI 1.1-1.6, P = .01) and positive RBD1Q (OR 1.3, 95% CI 1.05-1.5, P = .01). Independent risk factors for incident PD psychosis included the presence of minor phenomena (HR 3.0, 95% CI 2.4-3.9, P < .001), positive response on the NMSQuest apathy/attention/memory domain (HR 1.8, 95% CI 1.3-2.6, P < .001), and positive RBD1Q (HR 1.5, 95% CI 1.1-1.9, P = .004). CONCLUSIONS: Minor phenomena are common, associated with specific non-motor symptoms, and an independent predictor of incident psychosis in PD.

A Pilot Study of Telehealth Mindfulness-Based Cognitive Therapy for Depression in Parkinson's Disease.

Introduction: Parkinson's disease (PD) is characterized by high-rates of depression with limited evidence-based treatment options to improve mood. Objective: To expand therapeutic options, we evaluated the feasibility and effect of a telehealth mindfulness-based cognitive therapy intervention adapted for PD (MBCT-PD) in a sample of participants with DSM-5 depressive disorders. Methods: Fifteen participants with PD and clinically-significant depression completed 9 sessions of MBCT-PD. Depression, anxiety, and quality of life were evaluated at baseline, endpoint, and 1-month follow-up. Results: Telehealth MBCT-PD was feasible and beneficial. Completion rates exceeded 85% and treatment satisfaction rates were high. Notable improvements were observed for depression, anxiety, and quality of life over the course of the trial. Conclusion: Telehealth MBCT-PD shows promise and warrants further evaluation via randomized clinical trial with more diverse participants. Such research holds the potential to expand the range of therapeutic options for depression in PD, thereby setting the stage for personalized care.

Phenomenology of Atypical Anxiety Disorders in Parkinson's Disease: A Systematic Review.

OBJECTIVE: Anxiety is a prominent concern in Parkinson's disease (PD) that negatively impacts quality of life, increases functional disability, and complicates clinical management. Atypical presentations of anxiety are under-recognized and inadequately treated in patients with PD, compromising global PD care. METHODS: This systematic review focuses on the prevalence, symptomology and clinical correlates of atypical presentations of PD-related anxiety following PRISMA guidelines. RESULTS: Of the 60 studies meeting inclusion criteria, 14 focused on 'Anxiety Not Otherwise Specified (NOS)' or equivalent, 31 reported on fluctuating anxiety symptoms, and 22 reported on 'Fear of Falling (FOF)'. Anxiety NOS accounted for a weighted mean prevalence of 14.9%, fluctuating anxiety for 34.19%, and FOF for 51.5%. These latter two exceeded the average reported overall prevalence rate of 31% for anxiety disorders in PD. We identified a diverse array of anxiety symptoms related to motor and non-motor symptoms of PD, to complications of PD medication (such as "on" and "off" fluctuations, or both), and, to a lesser extent, to cognitive symptoms. CONCLUSION: Atypical anxiety is common, clinically relevant, and heterogeneous in nature. A better understanding of the phenomenology, clinical course, and pathophysiology of varied forms of atypical anxiety in PD is needed to improve recognition, advance therapeutic development and ultimately optimize quality of life in PD.

Criticism in the Parkinson's Caregiving Relationship: A Key Target for Intervention.

INTRODUCTION: Caregiver distress is prevalent in Parkinson's disease (PD) and predictive of negative health outcomes for both people with PD and caregivers. To identify future intervention targets, it is important to better elucidate the specific processes, such as criticism, that perpetuate burden. OBJECTIVE: Evaluate the frequency and impact of criticism and reactivity to criticism in PD caregiving dyads. METHODS: Eighty-three people with PD and their caregivers independently completed measures of criticism and physical and emotional health. RESULTS: Criticism in the caregiving relationship was reported by 71.1% (n = 59) of people with PD and 80.7% (n = 67) of caregivers. Both perceived criticism and emotional reactivity to criticism were significant predictors of caregiver distress, adjusting for PD motor and non-motor symptom severity. In contrast, criticism was not related to PD depression. CONCLUSION: Criticism in the PD caregiving relationship is a clear target for psychotherapeutic intervention and may improve caregiver health and quality of life.

A Systematic Review of Psychotherapy Approaches for Anxiety in Parkinson's Disease.

OBJECTIVES: Anxiety is common in Parkinson's disease (PD), negatively impacting daily functioning and quality of life in PD patients and their families. This systematic review evaluates the effectiveness of different psychotherapeutic approaches for reducing anxiety in PD and provides recommendations for clinical practise. METHODS: Following PRISMA guidelines, 36 studies were included and risk of bias was evaluated. RESULTS: We identified cognitive behavioral therapy (CBT), mindfulness-based therapies, acceptance and commitment therapy, and psychodrama psychotherapies. There is good evidence-base for anxiety reduction using CBT approaches, but with mixed results for mindfulness-based therapies. Other therapeutic approaches were under researched. Most randomized control trials examined anxiety as a secondary measure. There was a paucity of interventions for anxiety subtypes. Secondarily, studies revealed the consistent exclusion of PD patients with cognitive concerns, an importance of care partner involvement, and a growing interest in remote delivery of psychotherapy interventions. CONCLUSIONS: Person-centered anxiety interventions tailored for PD patients, including those with cognitive concerns, and trials exploring modalities other than CBT, warrant future investigations. CLINICAL IMPLICATIONS: Practitioners should consider PD-specific anxiety symptoms and cognitive concerns when treating anxiety. Key distinctions between therapeutic modalities, therapy settings and delivery methods should guide treatment planning.

Innovating Parkinson's Care: A Randomized Controlled Trial of Telemedicine Depression Treatment.

BACKGROUND: For several decades, a myriad of factors have contributed to the inadequate diagnosis and management of depression in Parkinson's disease (PD), leaving up to 60% of significantly symptomatic patients untreated. Poor access to evidence-based neuropsychiatric care is one major barrier to achieving optimal Parkinson's outcomes. OBJECTIVE: The goal of this study was to compare the efficacy of individual Parkinson's-informed, video-to-home cognitive-behavioral therapy (experimental group), to clinic-based treatment as usual (control group), for depression in PD. METHOD: Ninety United States military veterans with clinical diagnoses of both depression and PD were computer-randomized (1:1) to either the experimental or control group; randomization was stratified by baseline antidepressant use and blind to all other baseline data. The acute treatment period spanned 10 weeks and was followed by a 6-month extension phase. The Hamilton Depression Rating Scale was the a priori primary outcome. Depression treatment response was defined as a score ≤2 on the Clinical Global Impression Improvement Scale. All statistical analyses were intent to treat. RESULTS: Video-to-home cognitive-behavioral therapy outperformed clinic-based treatment as usual across three separate depression measures (P < 0.001). Effects were observed at the end of acute treatment and maintained through 6-month follow-up. Number needed to treat (based on treatment response classification) was 2.5 with an absolute risk reduction of 40%. CONCLUSION: Video-to-home cognitive-behavioral therapy may be an effective intervention to bypass access barriers to specialized, evidence-based depression care in PD and to address the unmet neuropsychiatric treatment needs of the Parkinson's community. © 2021 International Parkinson and Movement Disorder Society.

Integration and Extension of Specialty Mental Healthcare Services to Community Practice in Parkinson Disease.

Parkinson disease (PD) is a progressive neurodegenerative disease with a higher prevalence of neuropsychiatric symptoms compared with the general population. Symptoms such as anxiety, depression, psychosis, impulse control disorders, and cognitive impairment cause a greater worsening of quality of life than even the motor symptoms that define PD. Despite the ubiquity and impact of neuropsychiatric symptoms, specialty mental healthcare is not routinely available, accessible, or integrated in most neurology practices. Currently, training in PD-specific mental healthcare is not standard in most programs, and the need for subspecialty-trained, mental healthcare providers will only increase over time, as the prevalence of PD will more than double by 2060. Many barriers limit extension of mental healthcare into existing models of integrated or multidisciplinary care and the community at large. Foundations and professional societies have played an important role in raising awareness of mental healthcare needs in PD; however, their initiatives to promote integrated or multidisciplinary care have traditionally focused on disciplines outside of mental health such as physical, occupational, and speech therapy. This article examines these issues and suggests strategies to better address mental healthcare needs for PD patients in the future.

Cognitive behavioral therapy improves diverse profiles of depressive symptoms in Parkinson's disease.

OBJECTIVE: Depression is among the most common and debilitating nonmotor complaints in Parkinson's disease (PD), yet there is a paucity of controlled research to guide treatment. Little research has focused on the extent to which specific depressive symptom profiles may dictate unique clinical recommendations to ultimately improve treatment outcomes. The current study examined the impact of cognitive behavioral therapy (CBT) on different types of depressive symptoms in PD. It was hypothesized that the cognitive (eg, guilt, rumination, and negative attitudes towards self) and behavioral (eg, avoidance and procrastination) symptoms targeted most intensively by the treatment protocol would show the most robust response. The extent to which stabilized antidepressant use moderated specific symptom change was examined on an exploratory basis. METHOD: Eighty depressed people with PD participated in a randomized controlled trial of CBT plus clinical management, versus clinical management only. Hamilton Depression Rating Scale (HAMD) and Beck Depression Inventory (BDI) subscale scores, reflecting depressive symptom heterogeneity in PD, were the focus of this investigation. RESULTS: CBT response was associated with significant improvements in mood, sleep, anxiety, and somatic symptoms (HAMD), and negative attitudes toward self, performance impairment, and somatic symptoms (BDI). As hypothesized, the largest effect sizes were observed for cognitive and behavioral (vs somatic) symptoms of depression. Stabilized antidepressant use moderated the effect of CBT on somatic complaints (HAMD and BDI). CONCLUSIONS: CBT may improve a diverse array of depressive symptoms in PD. Cognitive and behavioral (vs somatic) symptoms showed the greatest change. Combining CBT with antidepressants may help optimize the management of somatic complaints in depression in PD (dPD).

Improved understanding, detection, and management of neuropsychiatric complications: essential components to the optimal treatment of Parkinson's disease.

It has been well established that Parkinson's disease (PD) is not just a movement disorder (Weintraub and Burn, 2011). Fortunately, the past two decades have seen increased attention to the neuropsychiatric aspects of the disease process. Neuropsychiatric symptoms (e.g., mood, sleep, psychosis, and impulse control) are experienced by the overwhelming majority of people living with PD (PWP) and have a detrimental impact on physical and cognitive decline (Pontone et al., 2016), quality of life (van Uem et al., 2016), and caregiving relationships (Santos-García, 2015). As a field, all multidisciplinary providers involved in the care of PWP, inclusive of movement disorder specialists, geriatric psychiatrists, clinical psychologists, social workers, and other allied healthcare providers, must work to improve the recognition and treatment of key non-motor symptoms, such as depression and anxiety, as part of the standard of care (Cohen et al., 2016). Improved detection and management is critical, as the failure to appropriately treat psychiatric complications negatively impacts the overall course of the illness, functional aspects of daily life, and the PWP ability to fully engage in their own self-care (Pontone et al., 2016).

Personalized Telemedicine for Depression in Parkinson's Disease: A Pilot Trial.

High rates of depression are observed in Parkinson's disease, and limited access to care complicates management. The purpose of this pilot project was to evaluate the feasibility and impact of a personalized cognitive-behavioral telemedicine program for depression in Parkinson's disease (dPD). Thirty-four individuals with dPD and their carepartners participated in this pilot study. A 10-module self-help workbook, tailored to the unique needs of the dPD population, was created to be used as either a stand-alone intervention, with minimal therapist support, or a supplement to formal telephone-administered cognitive-behavioral therapy sessions. Improvements in depression, anxiety, quality of life, sleep, negative thoughts, and caregiver burden were observed over the course of the 4-month study, independent of treatment modality (guided self-help vs formal telephone-based psychotherapy). Future research will utilize randomized controlled designs and continue to focus on delivery models that can improve access to this and other evidence-based mental health interventions for dPD.

Neuropsychological outcomes after psychosocial intervention for depression in Parkinson's disease.

The authors describe neuropsychological outcomes in people with Parkinson's disease (PD) after their participation in an NIH-sponsored, randomized, controlled trial of cognitive-behavioral treatment for depression. Improvements in mood were associated with modest gains in verbal memory and executive functioning over the 10-week treatment period and accounted for greater variance in neuropsychological outcomes at the end of treatment than other known correlates of cognitive functioning in PD, such as disease severity, age, and education. Baseline working memory and executive skills were also associated with depression improvement over time.

Barriers to mental health care utilization in Parkinson's disease.

BACKGROUND: Parkinson's disease (PD) is frequently complicated by co-occurring psychiatric problems such as depression and anxiety that negatively affect the course and management of the illness. Yet, in most cases, these psychiatric comorbidities are neither recognized nor treated to remission. The primary purpose of this study was to identify and describe barriers to mental health care utilization for people with PD. Secondary objectives included the assessment of attitudes and preferences regarding the need for mental health services in the PD community and the acceptability of telehealth interventions as a method for improving access and quality of care. METHODS: A total of 769 people with PD completed an anonymous cross-sectional questionnaire assessing barriers to mental health care utilization in this medical population. Respondents were drawn from a national sample. RESULTS: Commonly endorsed barriers to mental health care utilization in PD reflect the patients' incomplete understanding of mental health problems, access issues, and illness-specific concerns, as well as the inadequate screening and detection of psychiatric complications by medical providers and the need for more effective treatments in this medical population. Several demographic, medical, and psychiatric variables also influenced the likelihood of accessing mental health care. Interest in telehealth approaches to mental health treatment was high and, in several instances, correlated with perceived barriers to mental health care utilization. CONCLUSIONS: People with PD may encounter a multitude of barriers that impede their pursuit of mental health care. Clinical implications are discussed and further research is needed to replicate and extend these findings.

Impact of the Dopamine System on Long-Term Cognitive Impairment in Parkinson Disease: An Exploratory Study.

Background: Little is known about the impact of the dopamine system on development of cognitive impairment (CI) in Parkinson disease (PD). Objectives: We used data from a multi-site, international, prospective cohort study to explore the impact of dopamine system-related biomarkers on CI in PD. Methods: PD participants were assessed annually from disease onset out to 7 years, and CI determined by applying cut-offs to four measures: (1) Montreal Cognitive Assessment; (2) detailed neuropsychological test battery; (3) Movement Disorder Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS) cognition score; and (4) site investigator diagnosis of CI (mild cognitive impairment or dementia). The dopamine system was assessed by serial Iodine-123 Ioflupane dopamine transporter (DAT) imaging, genotyping, and levodopa equivalent daily dose (LEDD) recorded at each assessment. Multivariate longitudinal analyses, with adjustment for multiple comparisons, determined the association between dopamine system-related biomarkers and CI, including persistent impairment. Results: Demographic and clinical variables associated with CI were higher age, male sex, lower education, non-White race, higher depression and anxiety scores and higher MDS-UPDRS motor score. For the dopamine system, lower baseline mean striatum dopamine transporter values (P range 0.003-0.005) and higher LEDD over time (P range <0.001-0.01) were significantly associated with increased risk for CI. Conclusions: Our results provide preliminary evidence that alterations in the dopamine system predict development of clinically-relevant, cognitive impairment in Parkinson's disease. If replicated and determined to be causative, they demonstrate that the dopamine system is instrumental to cognitive health status throughout the disease course. TRIAL REGISTRATION: Parkinson's Progression Markers Initiative is registered with ClinicalTrials.gov (NCT01141023).

The neuropsychiatry of Parkinson's disease: advances and challenges.

In people with Parkinson's disease, neuropsychiatric signs and symptoms are common throughout the disease course. These symptoms can be disabling and as clinically relevant as motor symptoms, and their presentation can be similar to, or distinct from, their counterparts in the general population. Correlates and risk factors for developing neuropsychiatric signs and symptoms include demographic, clinical, and psychosocial characteristics. The underlying neurobiology of these presentations is complex and not well understood, with the strongest evidence for neuropathological changes associated with Parkinson's disease, mechanisms linked to dopaminergic therapy, and effects not specific to Parkinson's disease. Assessment instruments and formal diagnostic criteria exist, but there is little routine screening of these signs and symptoms in clinical practice. Mounting evidence supports a range of pharmacological and non-pharmacological interventions, but relatively few efficacious treatment options exist. Optimising the management of neuropsychiatric presentations in people with Parkinson's disease will require additional research, raised awareness, specialised training, and development of innovative models of care.

Telephone-based cognitive-behavioral therapy for depression in Parkinson disease.

BACKGROUND: Although face-to-face cognitive-behavioral therapy (CBT) was found to be beneficial for the treatment of depression in Parkinson disease (dPD) in a recent randomized-controlled trial, access to care was identified as a critical issue that needs to be addressed in order to improve the management of this nonmotor complication in PD. The purpose of this study was to examine the feasibility and effect of telephone-based CBT for dPD. METHODS: Twenty-one depressed people with PD participated in a National Institutes of Health-sponsored uncontrolled pilot trial of telephone-based CBT in an academic medical center from October 2009 to February 2011. The Hamilton Depression Rating Scale was the primary outcome. Treatment was provided to people with PD for 10 weeks, modified for delivery over the phone, and supplemented with 4 separate phone-based caregiver educational sessions. Assessments were completed at baseline and 5 (midpoint), 10 (end-of-treatment), and 14 weeks (follow-up) post-enrollment. RESULTS: Twenty (95%) people with PD completed the study treatment. Phone-based CBT was associated with significant improvements in depression, anxiety, negative thoughts, and coping. Mean Hamilton Depression Rating Scale change from baseline to week 10 was 7.91 points (P < .001, Cohen d = 1.21). CONCLUSIONS: Telephone-based CBT may be a feasible and helpful approach for treating dPD and warrants further exploration in randomized-controlled trials. Results were comparable to those observed in the few in-person cognitive-behavioral treatment studies for dPD conducted to date.

A Novel Approach to Treating Anxiety and Enhancing Executive Skills in an Older Adult with Parkinson's Disease.

Scientific interest in the nonmotoric symptoms of Parkinson's disease (PD) has increased dramatically, and psychiatric symptoms (e.g., cognitive impairment, anxiety and mood disorders) are now considered prime targets for treatment optimization. Psychiatric complications in PD are quite common, affecting as many as 60 to 80% of patients. This study describes the case of a 74 year-old male with PD who presented with complaints of anxiety and trouble with memory and attention. A combined cognitive behavior therapy and cognitive enhancement intervention was delivered in ten 90-to-120 minute sessions. The patient showed a reduction in anxiety symptoms that was of sufficient magnitude to meet criteria for 'responder' status. His cognitive skills were mostly unchanged, despite the rigorous rehabilitation practice. Implications for treatment and strategies for enhancing therapeutic benefits are discussed.

Telephone-based cognitive behavioral therapy for depression in Parkinson disease: A randomized controlled trial.

OBJECTIVE: To determine whether, for patients with depression and Parkinson disease (PD), telephone-based cognitive-behavioral treatment (T-CBT) alleviates depressive symptoms significantly more than treatment as usual (TAU), we conducted a randomized controlled trial to evaluate the efficacy of a 10-session T-CBT intervention for depression in PD, compared to TAU. METHODS: Seventy-two people with PD (PWP) were randomized to T-CBT + TAU or TAU only. T-CBT tailored to PWPs' unique needs was provided weekly for 3 months, then monthly during 6-month follow-up. CBT targeted negative thoughts (e.g., "I have no control"; "I am helpless") and behaviors (e.g., social withdrawal, excessive worry). It also trained care partners to help PWP practice healthy habits. Blind raters assessed outcomes at baseline, midtreatment, treatment end, and 1 and 6 months post-treatment. Analyses were intent to treat. RESULTS: T-CBT outperformed TAU on all depression, anxiety, and quality of life measures. The primary outcome (Hamilton Depression Rating Scale score) improved significantly in T-CBT compared to TAU by treatment end. Mean improvement from baseline was 6.53 points for T-CBT and -0.27 points for TAU (p < 0.0001); gains persisted over 6-month follow-up (p < 0.0001). Improvements were moderated by a reduction in negative thoughts in the T-CBT group only, reflecting treatment target engagement. CONCLUSIONS: T-CBT may be an effective depression intervention that addresses a significant unmet PD treatment need and bypasses access barriers to multidisciplinary, evidence-based care. CLINICALTRIALSGOV IDENTIFIER: NCT02505737. CLASSIFICATION OF EVIDENCE: This study provides Class I evidence that for patients with depression and PD, T-CBT significantly alleviated depressive symptoms compared to usual care.

Innovative Recruitment Strategies to Increase Diversity of Participation in Parkinson's Disease Research: The Fox Insight Cohort Experience.

BACKGROUND: Clinical research in Parkinson's disease (PD) faces practical and ethical challenges due to two interrelated problems: participant under-recruitment and lack of diversity. Fox Insight (FI) is a web-based longitudinal study collecting patient-reported outcomes and genetic data worldwide to inform therapeutic studies. FI's online platform provides an opportunity to evaluate online strategies for recruiting large, diverse research cohorts. OBJECTIVE: This project aimed to determine 1) whether FI's digital marketing was associated with increased enrollment overall and from under-represented patient groups, compared to traditional recruitment methods; 2) the clinical and demographic characteristics of samples recruited online, and 3) the cost of this online recruitment. METHOD: FI recruitment during a 6-week baseline period without digital promotion was compared to recruitment during several periods of digital outreach. Separate online recruiting intervals included general online study promotion and unique Facebook and Google ad campaigns targeting under-represented subgroups: early PD, late/advanced PD, and residents of underrepresented/rural geographic areas. RESULTS: Early PD, late PD, and geotargeting campaigns enrolled more individuals in their respective cohorts compared to baseline. All online campaigns also yielded greater total FI enrollment, attracting more participants who were non-White, Hispanic, older, female, and had lower educational attainment and income, and more medical comorbidities. Cost per new participant ranged from $21 (Facebook) to $108 (Google). CONCLUSION: Digital marketing may allow researchers to increase, accelerate, and diversify recruitment for PD clinical studies, by tailoring digital ads to target PD cohort characteristics.