Barriers to Mental Health Care Access for PWP
7 Barriers to accessing mental health care in Parkinson’s
Dr. Subramanian and colleagues including Dr. Chaudhuri, Dr. Mari and Dr. Fernandez wrote a paper along with Dr. Pontone a psychiatrist on the barriers to mental health care for PWP. Since the paper is not open access and contained some very key information to help PWP and their clinicians, we will cover some take home messages in this blog and in our next blog. This blog highlights the barriers and the next one will propose solutions. If you are having issues with your mental health, it is important to realize that you are not alone and to tell your loved ones and health care providers about what you are experiencing— so that you can get help. The holidays are a time when many people experience more issues with isolation and mental health- we urge you to check in with your loved ones at this stressful time.
1. Lack of Disease Awareness:
Most of the focus in Parkinson’s disease has been on motor symptoms. Health care providers may not be aware that PD includes a range of non-motor symptoms including mental health (MH) issues. MH issues often go undiagnosed because many patients and their caregivers do not know that apathy, depression, or anxiety can be associated with PD. A survey of PWP showed that 59% felt “doctors were not sensitive enough about PD-related issues in Mental Health treatment”. Psychological symptoms can be as disabling as motor symptoms and are a key predictor of quality of life.
Additionally , PD affects a wide range of age groups and diverse ethnic backgrounds— but most studies recruit heavily from white male populations. Clinical training that focuses upon the stereotypical picture of PD as a disease of aged white males may lead to a delayed diagnosis due to under-recognition of the disease in diverse population. Accuracy of diagnosis is reduced in communities with poor access to specialist care. In some rural communities, over 80% of persons who meet diagnostic criteria for PD may not be identified as having the disease
Therefore, it is essential to educate both providers and the public about the full spectrum of PD symptoms, including MH issues. We should work together to create public service announcements illustrating the diversity of patient types and presentations.
Dr. Pontone by Dr. Subramanian address these issues in the above interview. This wholistic series has a number of other interviews highlighting mental health.
2. Disparity based on Race, Gender, Age, Geography, Disability and Sexual Orientation:
Specialty PD centers and advanced therapies such as Deep Brain Surgery are disproportionately accessible to affluent, married, urban-dwelling, caucasians.
(a) Race: As we have seen with the COVID vaccination campaign, there are issues of mistrust and inequality that are common throughout the health care system. In PD, issues of distrust and avoidance of care are common especially with Black and Latinx patients . Ethnic minorities may not have equal access to interventions such as deep brain stimulation (DBS) surgery, which is offered less often to black women than other populations. Less than 1% of all DBS in the USA was performed in African Americans. There is a lack of inclusion and diversity in research, such that the majority of PD clinical trials do not report race or ethnicity statistics. Among those that do, Black and Hispanic participants each constitute less than 1% of study populations
(b) Gender: Women with PD are another underserved population with specific MH needs that must be addressed with customized strategies. The burdens of caring for ailing parents, homeschooling children, being separated from grandchildren, and balancing work stresses have all impacted women disproportionately during the pandemic.
(c) Age: Young-onset PD is another unique group with additional MH stressors including the impact of PD on romantic relationships, family dynamics, and employment in this age group. Anxiety and impulse control disorder are more common in young onset PD. Overlap of race and gender or sexual preference can also create unique profiles. A young, black, woman facing economic hardship or migrant farm worker who does not speak English are a few examples of persons who face unique challenges that must be proactively addressed.
(d) Sexual Orientation: A recent review highlighted the higher burden of social isolation, discrimination and stigma in gay, bisexual, transgender, queer and intersex (sexual and gender minority groups) PWP that could lead to higher MH issues and barriers to care.
(e) Geography: In the current model of care, multidisciplinary teams that include MH support are in urban settings. In the USA, most Centers of Excellence in the Veterans Administration (PADRECCs) and Parkinson Foundations are located in large cities. Lack of transportation (including parking, inability to drive, afford transportation) was identified by 30-40% of PWP as a barrier to MH care.
(e) Disability: As patients become more disabled, they have increasing difficulty accessing care in the urban office setting related to travel. Motor issues have been identified as significant barriers to MH care in 40% of patients surveyed.
3. Scarce Resources:
There is a shortage of PD-focused neurologists worldwide, including in most countries—- some people can wait months or years for appointments. Wait time has been further compromised due to the pandemic The prevalence of PD is increasing with life expectancy, with numbers expected to double by 2040. Haiti and some African nations have a single general neurologist for the whole country and hence lack even one movement disorders specialist. These shortages are associated with potentially serious consequences. For example, many of the medications for MH issues (such as dopamine-blocking agents like antipsychotics) can dramatically worsen PD symptoms and may be inadvertently prescribed to PWP in environments without experience in handling PD.
Many at-risk PWP cannot afford a computer, smart-phone, or internet access. This lack of access to technology is an obstacle for virtual visits, which have been essential during the pandemic . Some patients may not know how to operate the technology needed for tele-health. .
4. Stigma:
The diagnosis of PD can carry its own stigma which is further complicated by MH issues. Social stigma represents a major barrier to MH care that affects populations across the globe, especially for people of color. PWP are often embarrassed by MH issues and do not disclose these unless specifically asked. Most PWP will not come forward with impulse control issues, sexual issues, loneliness, or apathy. Most patients (and many clinicians) see the mind and the body as two separate entities and feel less embarrassment when seeing a neurologist than a psychiatrist or a psychologist.
5. Pandemic Related Issues:
The already poor access to MH care has been worsened by the pandemic and complicated by the inability of some patients to use telehealth visits. Loss of employment (and insurance) have further worsened access. Out of pocket cost of MH care was identified as a barrier in 64% of PWP in a pre-pandemic survey.
COVID has unmasked the MH crisis and is compounding the effects of earlier traumas, including Adverse Childhood Experiences (ACES) and their consequences, such as post-traumatic stress disorder (PTSD). Little attention has been paid to the effects of trauma on PD and the ongoing societal burden of the lingering mental and physical health consequences of COVID. Many PWP have had loved ones pass due to the virus and have not had the chance to grieve due to social distancing.
6. Caregiver Burnout:
Caregiver MH and burnout is a major issue. Social isolation has increased the burden on caregivers both directly in that they have less chances to get a break and indirectly as increased MH issues in the PWP is associated with greater strain and depression in caregivers. Addressing the needs of caregivers is fundamental to any MH support plan.
7. Archaic model(s) of health care delivery:
The current model of health care delivery has led to a lack of focus and time to address MH issues in PD. In many countries with an insurance-driven healthcare system, a fee-for-service model leads to little or no incentive to pursue patient-centered care. MH care in particular tends to be focused on reacting to problems rather than emphasizing prevention. Most physicians see patients every 6 months for 15-30 minutes. which is insufficient to address all of the issues in the motor and non-motor domains. Even when identified, MH complaints are often inadequately addressed, with 38.5% failing to receive a referral for MH care. During the pandemic, reduced in-person contact and mask use (which hides facial expressions) further complicates the identification of disordered mental states.
Neurologists spend most of the visit adjusting medications for motor impairment, while MH issues are often unrecognized until they become a crisis. There is a lack of continuity of care with MH providers in the current model of health care and PWP may not have long-term treatment relationships with their MH provider to develop coping strategies to reenforce emotional well-being.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.