Increasing recognition of Parkinson disease in Black patients

A recent news story in The Philadelphia Inquirer profiled a Black woman who visited her primary care physician for upper body pain, stiffness, and an unusual gait and was surprised when she was ultimately diagnosed with Parkinson disease. Known by many as an “old White man’s disease,” Parkinson disease affects around 1 million Americans but historically has had low visibility in the Black community, with rare exceptions such as the late boxer Muhammad Ali, who lived with it for 34 years before his death.

Although some studies have suggested that Parkinson disease occurs less often in Black patients than in White patients, a 2020 review found mixed evidence that incidence and prevalence differ significantly by race and pointed to disparities in accessing health care at similar degrees of symptomatology as possible explanations for discordant study findings. A study of 74 patients with newly diagnosed Parkinson disease at a Veterans Affairs medical center concluded that Black patients were less likely than White patients to self-report disability, possibly leading to delays in diagnosis.

According to a 2020 article in American Family Physician, Parkinson disease most commonly presents with “a unilateral resting tremor, often localized to the distal muscles of the hand, causing a pill-rolling motion.” Other key features include cogwheel rigidity and bradykinesia, such as shuffling steps and a freezing gait. Nonmotor symptoms “include rapid eye movement sleep disorder, depression, constipation, fatigue, and olfactory dysfunction” and may precede motor symptoms in many cases. Postural instability and falls occur later in the course of illness. In cases of diagnostic uncertainty, a dopamine transport single-photon emission computed tomography scan (DaTscan) may be used to distinguish Parkinson disease from atypical essential tremor and drug-induced Parkinson-like syndromes.

Recommended therapies for motor symptoms (summarized in a Table and treatment algorithm) include carbidopa/levodopa for significant symptoms, monoamine oxidase-B inhibitors or non-ergot dopamine agonists for milder symptoms, and anticholinergic agents and amantadine for patients younger than 65 years with tremors only. Another Table summarizes pharmacologic management of common nonmotor symptoms. Unfortunately, no therapies have been shown to slow disease progression. On average, patients with Parkinson disease progress from impairment to loss of independence between three and seven years after diagnosis. In patients with Parkinson disease, 40% develop dementia, 20% to 40% develop psychosis, and some eventually have swallowing impairments, aspiration pneumonia, and weight loss due to loss of appetite and difficulty eating.

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This post first appeared on the AFP Community Blog.

To break the UK's National Health Service, roll out prostate cancer screening

The United Kingdom's National Health Service (NHS) is celebrating its 75th anniversary this month. Long hailed as a model health system that provided universal coverage and high-quality care without overly taxing the national budget, the NHS has fallen on hard times. It faces challenges of underfunding, an aging and unhealthy population, an inadequate and increasingly exhausted workforce, and a projected shortage of hospital beds. The headline of a New England Journal of Medicine article asked if the NHS was "at breaking point or already broken?" The widely reported failures of the system to meet patients' basic needs since December 2022 - a time when it should have been recovering from the stresses of the pandemic - has caused public confidence to plummet:

The unspoken agreement between the NHS and U.K. residents was that despite some rationing of care, regional differences in service availability, and the often aging and less-than-sparkling premises, in the event of a medical emergency, an ambulance would arrive promptly and high-quality care would be available at a hospital without anyone requiring an insurance card. That agreement has been broken, and satisfaction with the service is at record lows.

It likely provides little consolation to our neighbors across the pond that the U.S. is in an even sorrier state despite spending twice as much of our gross domestic product per capita on health care services. But the U.K. seems determined to add insult to injury. Despite the resoundingly negative result of the country's only major randomized trial of PSA-based screening, the NHS seems poised to roll out a population-based prostate cancer screening program. (Currently, U.K. men over age 50 can request to have PSA testing, but doctors are not encouraged or incentivized to provide the test routinely to their eligible patients.) They need only look to the U.S. to see that this decision would be a public health disaster that would produce millions of new (mostly overdiagnosed) cancer patients and divert resources away from other primary care preventive care services with a much better likelihood of improving health.

As Dr. Andrew Vickers and colleagues wrote in a recent BMJ article, the prevailing approach to PSA screening in the U.S. and other high-income countries of "informed choice" or "individual shared decision making" drives high rates of testing in older patients who are least likely to benefit and most likely to be harmed, leading to overdiagnosis and inequities:

Approaches to PSA testing that rely on people making an informed choice are likely to reflect and reproduce health inequities in preventive healthcare. Data from Canada, the US, and Switzerland suggest PSA testing is inversely associated with income and education; in Canada and the US, PSA testing is less common in people from ethnic minorities. In the UK and Switzerland, rates of PSA testing are lower in economically deprived areas. Although the effects of disparate rates of PSA testing on health outcomes are still unclear, countries should decide who gets offered screening based on a risk assessment rather than leaving it to individuals.

Vickers and colleagues went on to advise that countries either set up government-sponsored, comprehensive, risk-based programs for prostate cancer detection or, alternatively, make a "clear recommendation against PSA-based screening" - a situation that existed in the United States between 2012 and 2018 when the U.S. Preventive Services Task Force gave this service a "D" (don't do) recommendation grade. The former would presumably maximize benefits by only testing persons at the highest risk of dying from prostate cancer, while the latter would minimize harms by declining to prematurely diagnose prostate cancer in well men. Since 2018, the U.S., and now potentially the U.K., have made the worst choice of all.

Many areas of the U.S. lack integrated behavioral health in primary care

A Graham Center Policy One-Pager in the June issue of American Family Physician overlaid the geographic locations of integrated behavioral health clinics in primary care over a color-coded map of U.S. counties’ percentages of residents reporting poor mental health. In an ideal world, these clinics, which are associated with better health outcomes, higher patient satisfaction, and lower costs, would cluster in regions with greater mental health distress. Unfortunately, the Graham Center analysis found that the opposite was frequently the case, with such clinics “notably lacking in … rural Kentucky, Louisiana, Tennessee, and West Virginia.”

What factors could account for this apparent mismatch between integrated behavioral health supply and demand? A recent Health Affairs Forefront article noted that obstacles to widespread adoption include an ongoing debate about the need for high fidelity to the evidence-based Collaborative Care Model, which can be difficult to implement, and inadequate fee-for-service payment relative to costs of practice re-design and ongoing services. Successful efforts to improve behavioral health integration in Rocky Mountain Health Plans, Blue Cross Blue Shield of Michigan, Rhode Island, and Minnesota have relied on multiple approaches customized to primary care structures and community needs.

A 2022 study in the Journal of General Internal Medicine examined characteristics of integrated behavioral health associated with primary care clinician confidence in managing depression in a network of community health centers (CHCs) in 10 mid-western states. Primary care clinicians reported more confidence when their CHCs had depression tracking systems; when they were satisfied with the accuracy of depression screening; when they had access to behavioral health treatment plans; and when they cared for more patients with depression. In contrast, clinicians working at CHCs with more patients living below the poverty line had lower confidence in prescribing antidepressants, while those at CHCs with more Black patients had lower confidence in diagnosing depression.

Integrated behavioral health clinics may or may not provide treatment for persons with opioid use disorder or other substance use disorders, even though these commonly co-occur with mental health problems. In a Substack post, Ben Miller explained that shared vulnerability, dual diagnosis, and bidirectional influence support pairing mental health and addiction treatment. Obstacles to concurrent treatment in primary and specialty care settings include societal stigma, diagnostic classification systems, health system fragmentation, and different treatment philosophies.

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This post first appeared on the AFP Community Blog.

Housing matters for good health

What does a "renter's utopia" in Vienna have to do with optimal treatment of asthma?

Francesca Mari's recent New York Times Magazine article about public housing in the capital city of Austria features images of beautiful, well-maintained apartment buildings with rooftop swimming pools, lots of green foliage and attractive playgrounds. 80 percent of the city's residents qualify for public housing, a staggeringly high percentage that might imply to an American that the vast majority of people living there are poor. Actually, Vienna makes its plentiful supply of municipal housing (which they call "social housing") available to a large portion of the middle class, and tenants cannot be turned out no matter how much their incomes increase after signing the initial rental contract.

To American eyes, the whole Viennese setup can appear fancifully socialistic. But set that aside, and what’s mind-boggling is how social housing gives the economic lives of Viennese an entirely different shape. ... Imagine having to think about [housing expenses] to the same degree that you think about your restaurant choices or streaming-service subscriptions. Imagine, too, where the rest of your income might go, if you spent much less of it on housing. Vienna invites us to envision a world in which homeownership isn’t the only way to secure a certain future — and what our lives might look like as a result.

In contrast, wrote Mari, one of several "fatal" compromises to the real estate industry in the Housing Act of 1937, restricted eligibility for public housing in the U.S. to "those so poor that they could never secure decent housing in the private market." These units were deliberately underfunded and poorly constructed. As millions of past and current residents of American urban housing projects could testify, "America's public housing was designed to fail: to be unappealing to anyone who could afford to rent."

Which brings me to patients with asthma who live in American public housing projects or neighborhoods in similar states of disrepair. In West Philadelphia, the Children's Hospital of Philadelphia (CHOP) partnered with community organizations to implement Community Asthma Prevention Program Plus, a program that performed home inspections of CHOP patients with asthma and completed repairs to 97 homes that were deemed likely to benefit these patients, including carpet removal, roof and plumbing repairs, improving ventilation, and eradicating mold.

That's great, but what if the home is located next to an interstate highway, factory, or power plant emitting pollutants that can't be easily remediated by a contractor? Or if these patients' asthma exacerbations are triggered by the stress of living in a violent neighborhood? The logical next step is to move to a different home. The case settlement for a 1995 lawsuit against the U.S. Department of Housing and Urban Development for discriminatory public housing practices created the Baltimore Regional Housing Partnership (BRHP), which as of October 2020 had provided housing vouchers to more than 5,200 households to move to privately-owned housing in low-poverty neighborhoods. A research team followed 123 children with persistent asthma whose families moved with BRHP's assistance from 2016 to 2020. Compared to a control group, these children experienced fewer exacerbations, fewer days with symptoms, and lower measures of stress.

Hospitals and health systems are now investing in affordable housing to improve health in many areas of the country, reasoning that being homeless or housing insecure presents a huge obstacle to attaining control of asthma, diabetes, and other chronic diseases. Health care payers are also taking notice. In an ambitious experiment, California's Medicaid program is spending $12 billion over the next 5 years on "a new kind of safety net that provides housing and other services for [145,000] people who are homeless or at risk of becoming homeless and have complicating conditions like mental illness or chronic disease." Whether the experiment will achieve its aim of moderating the program's soaring health care costs remains to be seen, but even if it doesn't, giving people access to decent housing is a worthy end in itself. Kudos to Philadelphia, Baltimore, and California for thinking outside of the health care box, but I'd rather be in Vienna: a city where grinding poverty and housing vouchers aren't necessary for persons of modest means to afford a clean and safe apartment for as long as they want to live there.

Patient portals and electronic health record transparency: pros and cons

After completing my fellowship, I considered taking a job filling in for a family physician on sabbatical who had been in solo practice for thirty-plus years. Even for these pre-electronic health record (EHR) days, his written notes were telegraphic. A typical example: "Patient doing fine. Labs normal. Continue current meds and follow up in 6 months." That was it. What he recorded in the chart was for his eyes only. No need to write an essay, or even a paragraph, when the only purpose was to jog his memory for the next time he saw the patient.

A few years later, the federal government handed tens of billions of dollars to physicians and health care organizations to convert their paper charts to digital form in exchange for requirements to use these records to measure quality of care and increase transparency of health information to patients through so-called “patient portals.” Notes became longer and more detailed. The negative effects of EHRs on physician burnout and health care team communication have been well-documented. Aside from initiatives such as OpenNotes, however, transparency was not fully implemented until last year, when the Office of the National Coordinator for Health Information Technology re-interpreted a previous rule against “information blocking” as an expectation that patients would have real-time online access to their office notes and test results rather than having to request them. With little fanfare, the floodgates opened.

In an insightful article in The New Yorker, Dr. Danielle Ofri, a general internist, admitted her newfound reluctance to list an extensive differential diagnosis for anemia in the EHR because she worried that mentioning colon cancer or a duodenal ulcer could scare the patient. After all, she observed, “my inbox was already jammed with panicked messages from people convinced that they had catastrophic illnesses, based on minuscule lab discrepancies and panic-inducing Google searches.” Comparing EHR transparency to the “C-SPAN effect,” in which live, nonfiltered television coverage of Congress made lawmakers more likely to grandstand to the camera, Ofri noted that granting patients instant access to test results has also had unintended consequences:

In one devastating stretch of twenty-four hours, two of my patients learned of their cancers’ metastatic reappearance by way of the portal. Their inboxes pinged with new test results; they read them before either their oncologist or I had even seen the scans, let alone called. … In the past, I’d do the legwork [for the evaluation] before I called the patient. Now that buffer is gone, and I am pressured to act immediately: the patient has seen the result, and further delay would be unconscionable. This timbre of rush imperils thoughtful analysis, and I worry incessantly about missteps.

In contrast to the mixed feelings of primary care clinicians and staff about patients having online access to their health records, research suggests that patients overwhelmingly prefer to see test results immediately, even though those marked as abnormal increased worry prior to discussions with health professionals. Sometimes, portals save time. Rounding on my practice’s adult inpatient service last month, I was pleasantly surprised that in several cases I could skip through the text of a recently resulted blood or imaging test finding – which the patient or their designated decision-maker had already seen on a smartphone app – and jump straight into the implications for their condition and care plan. Finally, portals allow patients to proactively correct or update medications, allergies, and problem lists outside of office visits, rather than taking up precious minutes with medical assistants or physicians in the examination room.

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This post first appeared on the AFP Community Blog.

Counseling parents about the leading cause of death in U.S. children: guns

A former colleague of mine maintained throughout his career that the most logical way for family physicians to provide preventive services for adults was to focus on the most common causes of death. Although the top diagnoses leading to death recorded by the Centers for Disease Control and Prevention in 2021 were heart disease, cancer, and COVID-19, that’s not what he meant. Instead, he was speaking of the “actual causes of death,” or the behavioral causes of the causes, which from 1990 to 2017 were tobacco use, poor diets, and physical inactivity. Clinicians can have the largest effect on preventing death in adults by counseling patients to stop smoking, eat healthier foods, and exercise.

What about children and adolescents? All-cause mortality in Americans aged 1 to 19 years has been increasing since 2019, partially due to COVID-19 but mostly from a rise in fatal injuries that began prior to the pandemic. Motor vehicle accidents, which have long been the top cause of death in this age group, were surpassed for the first time in 2020 by homicides and suicides from firearms. Mass shootings in schools and public places attract media attention, but data from the Gun Violence Archive show that these account for a tiny fraction of firearm-related deaths.

In comparison, a 2022 American Academy of Pediatrics policy statement reported that 28 children and young adults through age 24 die from gun violence in the U.S. every day – the equivalent of a typical classroom. A recent Commonwealth Fund report comparing the U.S. to 13 other high-income countries found that Americans are five times more likely to die from being shot than residents of Canada, Switzerland, or France. The report also noted that nonfatal and fatal firearm injuries generate more than $1 billion in initial medical costs each year.

A cross-sectional study of four major cities (New York City, Los Angeles, Chicago, and Philadelphia) found that firearm assaults in children increased substantially during the pandemic, with Black, Hispanic, and Asian children being significantly more likely to experience violence. In March, a nationally representative poll found that 21% of adults have been personally threatened with a gun, 19% have had a family member killed by a gun (including suicide), and 17% have personally witnessed someone being shot. However, only 26% of parents of children under age 18 said that their child’s physician had ever asked them about having guns in the home, and only 5% said that their doctor had discussed gun safety.

A 2020 American Family Physician article on prevention of childhood injury recommended that physicians “ask patients whether there are guns in the home and counsel them about the risk of gun-related injury and about safe storage practices … [and] consider contacting legislators if local gun laws are not in the best interest of children's safety.” A previous editorial that I co-authored with other AFP editors noted that “child-access prevention laws (e.g., safe gun storage) reduce self-inflicted and unintentional firearm deaths and nonfatal injuries among youth, and may reduce unintentional firearm injuries among adults.” By counseling patients in our offices and advocating for legislation to promote firearm safety, family physicians can complement community health initiatives that reduce the risk of gun violence in children. For example, Communities That Care, a prevention program that addresses risk and protective factors for behavioral problems early in life, was recently shown in a randomized trial to reduce the prevalence of handgun carrying in 4400 adolescents living in 24 small towns in 7 states.

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This post first appeared on the AFP Community Blog.