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Pressing Gaps in Care Exist for Patients With Parkinson Disease

NeurologyLive, April 2022, Volume 5, Issue 2

The pandemic has highlighted several large gaps in care that have created challenges for individuals with Parkinson disease, including a framework for addressing mental health and loneliness, and proper care for women with PD.

THE COVID-19 PANDEMIC has highlighted tremendous gaps in the care of individuals with Parkinson disease (PD). Perhaps a silver lining from this turbulent time will be the opportunity to work together to improve care in pressing areas of need for individuals with PD: mental health, women’s issues, and loneliness.

Individuals with PD and their caregivers often face great barriers in accessing mental health care. Several colleagues and I highlighted this in “Mind the Gap: Inequalities in Mental Health Care and Lack of Social Support in Parkinson Disease,” which was published in Parkinsonism & Related Disorders in 2021.1 Additionally, women’s issues in PD, especially from a psychosocial standpoint, have been overlooked, and we highlighted those in “Unmet Needs of Women Living With Parkinson’s Disease: Gaps and Controversies,” which was published in Movement Disorders in 2022.2 And finally, our research on the negative effects of loneliness in individuals with PD, “Synergy of Pandemics—Social Isolation Is Associated With Worsened Parkinson Severity and Quality of Life,” was published in npj Parkinson’s Disease in 2020.3

Mental Health

Most providers still focus on motor issues such as tremor, stiffness, slowness, and gait disorders with little attention paid to nonmotor issues, including mental health issues, in individuals with PD. Results of a survey of patients with PD showed that 59% felt their doctors were not sensitive enough about PD-related issues in mental health treatment.4 Psychological symptoms can be as disabling as motor symptoms and are a key predictor of quality of life.5,6 Mental health issues often go undiagnosed because many patients and their caregivers do not know that apathy, depression, or anxiety can be associated with PD.7,8 Patients often feel embarrassed or hesitant to disclose issues in mental health unless specifically queried.9

There have been disparities in the care of patients with Parkinson disease based on race, gender/sex, age, geography, disability, and sexual orientation. Multidisciplinary specialty centers and advanced therapies are disproportionately accessible to affluent, urban-dwelling White individuals.10 An investigation of more than 657,000 Medicare beneficiaries with PD showed that for every 1 Black patient who received deep brain stimulation (DBS), 5 White patients received the procedure.11,12 Inclusion and diversity are lacking in research, and the majority of PD clinical trials do not report race or ethnicity statistics, with one study noting that among 32 clinical trials conducted in the United States over a 23-year period, only 9 reported detailed racial/ethnic composition of trial participants—of those, only 1.7% were Black, and 1.3% were Latino/Hispanic.10,13 Often, among those trials that do, Black and Hispanic participants each constitute less than 1% of study populations.13

Patients with young-onset PD (occurring in those younger than 50 years) face additional mental health stressors such as the impact of the disease on romantic relationships, family dynamics, and employment.14 Anxiety and impulse control disorder are highly prevalent in patients with young-onset PD.15

A recent review highlighted the higher burden of social isolation, discrimination, and stigma in sexual and gender minority groups that could lead to higher mental health issues and barriers to care.16 Intersectional aspects of identity may compound the impact of a PD diagnosis. A young Black woman facing economic hardship or a migrant farm worker who does not speak English are examples of individuals who face unique challenges that must be addressed.

There is a scarcity of resources to address the mental health needs of individuals with PD, and telehealth has been proposed as one solution. However, many at-risk individuals with PD cannot afford a computer, smartphone, or internet access.17 This barrier excludes the most vulnerable populations from remote-care models and inhibits social prescription strategies that have been relied upon during the pandemic.

COVID-19 has unmasked the mental health crisis and is compounding the effects of earlier traumas, including adverse childhood experiences and their consequences such as posttraumatic stress disorder.18 Little attention has been paid to the effects of trauma on patients with PD,19 and the ongoing societal burden of lingering mental and physical health consequences of COVID- 19. Many individuals with PD have had family and friends die from the virus and have not had the chance to grieve because of social distancing. Other individuals with PD have had COVID-19 and are dealing with the physical and psychological effects of long COVID-19 syndrome.20 Caregivers also face mental health issues, depression, and burnout due to social isolation, which has reduced their opportunities for respite.21

The current health care delivery model has led to a lack of focus and time to address mental health issues in patients with PD. A fee-for-service insurance model often leads to little or no incentive to pursue patient-centered care. Most physicians see patients every 6 months for 15 to 30 minutes, which generally is insufficient to address all of the issues in the motor and nonmotor domains.22 Even when identified, mental health complaints are often inadequately addressed, with 38.5% of patients with PD failing to receive a referral for mental health care.3

During the pandemic, mask use (which obscures expressions) and reduced in-person contact further complicated the identification of disordered mental states. Neurologists may spend most of the visit adjusting medications for motor impairment, and mental health issues are often unrecognized until they become a crisis. Erratic time points for accessing mental health resources may lead to a relationship with mental health providers that lacks continuity. Hence, without long-term treatment relationships, individuals with PD may not develop coping strategies to reinforce their emotional well-being.23

Women With PD

There are significant gaps in research, advocacy, and treatment of women with PD, and the existing data are very conflicting in almost every aspect. “Unmet Needs of Women Living With Parkinson’s Disease: Gaps and Controversies” provides an overview of the current knowledge, gaps, and possible strategies to deal with issues facing women with PD and focuses on the clinical and psychosocial aspects. This paper is unique in that 3 women with PD who are in health care lend their voices to this publication as authors.2

The gaps we identified included the following:

  • Women-inclusive drug and device studies, genetic, and hormones need to be considered. Women with PD need to learn how to communicate their symptoms and needs, become engaged in research, organize as a community, and support one another.
  • Women with PD need tools to help track and convey their unique motor and nonmotor symptoms, and psychological and social support needs. The management of PD needs to be customized for the unique stages of women’s lives, including menstrual cycles, pregnancy, perimenopause, menopause, and post menopause.
  • Specific guidelines for use of hormonal treatments and customized dopamine replacement dosing need to be developed.
  • Basic core competencies for clinicians treating women with PD should be established, such as accurately diagnosing, proactively identifying, and managing the symptoms of PD in women, including timely referral for specialty care, advanced therapies, and research studies.
  • Caregivers and families need guidance on holistically supporting women with PD.

PD is often thought of as a disease affecting older White men. Results from a survey of public knowledge showed that elderly males were most frequently mentioned as likely to have PD.24 Although there have been efforts to modify this perception,25 more needs to be done. For women, there often is a delay in receiving an accurate diagnosis of PD and a referral to a movement disorder specialist.26,27 Clinical differences in presentation are not solely responsible for delays in the diagnosis of PD. Some factors lie with women themselves, such as a decreased tendency to disclose or emphasize bothersome symptoms during medical assessments. Perceptions by physicians that PD is more common in men may also contribute to delays.26 These inequities are further magnified in marginalized communities within countries where traditionally underserved minorities are more likely to have a missed diagnosis or to have received a delayed diagnosis.28

Delays in diagnosis may lead to more dissatisfaction with care in women with PD versus men with PD. Women with PD may feel they are not being heard or that what matters to them most is not taken into consideration.29,30 Negative care experiences can affect symptom reporting.29 Women may not consistently share their concerns or symptoms with their providers, particularly around mental health and other sensitive topics (eg, pelvic floor problems) and thus are not treated for these issues.29 Women with PD may downplay their symptoms or not associate these symptoms with PD and thus do not receive treatment.31 A study of older patients with PD found that women prioritize symptoms that affect their ability to organize and strengthen social relationships and they were more likely to become distressed when unable to fulfill their domestic responsibilities.32

Loneliness in Patients With PD

The goal of our study “Synergy of Pandemics—Social Isolation Is Associated With Worsened Parkinson Severity and Quality of Life” was to evaluate the effect of social isolation on PD symptom severity and quality of life.3 The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely reported a 55% greater symptom severity (P < .01). Individuals who documented having many friends had 21% fewer symptoms (P < .01).3 Social isolation was associated with greater patient-reported PD severity and lower quality of life. In essence, the social isolation of individuals with PD has been further compounded by the COVID-19 pandemic. The results emphasize the need to keep individuals with PD socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.

There have been comparisons in the literature of social isolation being as detrimental to aging populations’ health as smoking or obesity. After accounting for multiple covariates, a key study reported the increased likelihood of death was 26% for reported loneliness, 29% for social isolation, and 32% for living alone.33 Investigators have identified 3 dimensions of loneliness reflecting the particular relationships that are missing. Intimate, or emotional, loneliness is the yearning for a close confidante or emotional partner. Relational, or social, loneliness is the longing for close friendships and social companionship. Collective loneliness is the need for a network or community of those who share one’s sense of purpose and interests. Loneliness can be felt if any 1 of these dimensions is not satisfied; for instance, it is possible to be happily married and still feel lonely.34

Social prescribing is a novel concept in which clinicians recommend or prescribe resources or activities in the community to help patient develop healthy social connections.35 The Department of Veterans Affairs recently created the “Compassionate Contact Corps Program,” which uses volunteers to call veterans who are lonely and check in on them. Volunteering can also help loneliness, and it has been proposed that veterans be paired up with each other to make such calls. The National Health Service in the United Kingdom designed a link worker social prescribing program that lists referrals to group exercise classes, art-based therapies, volunteer opportunities, self-help groups for specific conditions, and community activities such as gardening and cooking.35 Proactive screening of individuals with PD using questions from the UCLA loneliness scale and referring lonely individuals with PD to social support resources could help keep them socially connected during the pandemic and beyond.

Taking time to reflect on whom we are not serving well and how we can do better has been an important consequence of the COVID-19 pandemic. Addressing disparities in the care of women with PD, improving barriers to mental health care, and keeping individuals with PD socially connected have been important areas of unmet needs. Educating ourselves and advocating for our patients are critical steps to improving the disparities in the care of individuals with PD.

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