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Tag: test results

  • A Simple Marketing Technique Could Make America Healthier

    A Simple Marketing Technique Could Make America Healthier

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    This article was originally published in Knowable Magazine.

    Death from colorectal cancer can be prevented by regular screenings. Controlling high blood pressure could prolong the lives of the nearly 500,000 Americans who die from this disease each year. Vaccinations help prevent tetanus, which could otherwise be lethal.

    Clearly, preventive medicine can make a big difference to health.

    And yet most people don’t get the preventive care that could save their lives. Indeed, as of 2015, only 8 percent of U.S. adults 35 and older had received all immunizations, cancer screenings, and other high-priority services recommended for them.

    Researchers seeking to change that are borrowing a page from Facebook, Google, and other tech companies. By rapidly comparing small differences in how they communicate with patients—a process known as A/B testing—health-care workers can quickly learn what works and what doesn’t. The approach has already delivered several actionable improvements, though not everyone is convinced of its value.

    Tech-oriented companies use A/B testing to make decisions about marketing slogans, web-page colors, and lots of other options. The key is randomization, meaning that people are randomly assigned to see different versions of whatever is being tested. Does a bigger “Subscribe” button on a website generate more clicks than a smaller one? Does one headline over a story capture more readers than another?

    Read: There’s no such thing as a casual interaction with your doctor anymore

    Leora Horwitz, an internist and a health-services researcher at NYU Langone Health, and her colleagues adopted this technique—which they call rapid randomized controlled trials—to learn how to improve the delivery of health-care services. Randomized controlled trials, or RCTs, are widely used in medicine, typically to test new drugs or other disease treatments. For example, patients may be randomly assigned to receive either a new drug or the current standard treatment, then followed for months or years to assess whether the new drug works better. But those trials are slow and expensive, in part because researchers have to recruit people willing to be in a medical experiment.

    Rapid RCTs, by contrast, are not used to study new treatments, so nobody has to be recruited to participate. Rather, Horwitz’s goal is to improve health-care delivery through quick trials in which one can repeatedly test and fine-tune changes to health-care delivery based on what researchers learn from each test.

    “We are randomizing what we’re doing so that we can quickly and accurately assess whether what we are doing is working,” says Horwitz, who wrote about the approach in the 2023 Annual Review of Public Health.

    For example, Horwitz and her colleagues wanted to figure out how to get patients to book appointments to address care gaps—preventive services that are overdue. Because of the huge number of patients, physicians’ offices can’t contact everyone by telephone or through the online portal that NYU Langone uses to communicate with patients. So the health system needed to understand what type of reminders were most effective.

    In the A/B test, patients with care gaps were divided into two sets: those who had signed up for an online-portal account and those who had not. Patients in each set were then sorted into different groups based on their health-care history. Patients who, based on past behavior, were unlikely to initiate appointments on their own were put in higher-risk groups; those who had eventually booked their own appointments in the past were assigned to lower-risk groups.

    In one part of the test, several thousand patients who had no portal account were randomized so that some received a telephone-call reminder and others did not. Patients who received a phone call booked appointments to address 6.2 percent of the care gaps, compared with just 0.5 percent among those who were not called.

    In another part of the test, some patients with portal accounts received a reminder message through that channel, while others did not. Of those who received the message, 13 percent scheduled the needed services, compared with 1.1 percent of those who were not contacted.

    Importantly, the experiments revealed that a phone-call reminder was the most effective way to reach the subgroups of patients who were high-risk and the least likely to get their preventive services without a nudge. Shortly after the test results were known, NYU Langone prioritized all of its highest-risk patients to receive telephone reminders and greatly expanded its capacity for sending messages through the patient portal.

    “When we learn something, we apply that to all of our messaging quickly,” Horwitz says. That immediately extends what they’ve learned to tens of thousands of people. “That’s gratifying.”

    Read: Do you really want to read what your doctor writes about you?

    NYU Langone’s A/B testing is why many of the medical center’s female patients are now receiving short messages to remind them to schedule their mammograms. The researchers used rapid RCTs to test the wording on reminders sent through the online portal: Would shorter messages get better results? Indeed, patients who received a 78-word reminder scheduled nearly twice as many mammograms as those who received the old 155-word message.

    In another investigation, to find out how to boost vaccination rates among very young children, Horwitz and her team turned to rapid randomized tests that compared one-text and two-text reminders to parents against no text reminder at all. Only the two-text reminder—one sent at 6 p.m., the other sent at noon two days later—made a difference, tripling the number of appointments scheduled. Most appointments were made after the second text, suggesting that this booster reminder was what triggered the parents to act.

    Though it’s still new to the health-care sector, the idea of rapid RCTs is catching on. One research team—an economist, a physician, and a public-policy expert, none of whom was affiliated with Horwitz’s group—used the technique to learn how to increase the use of preventive-care services by Black men, the U.S. demographic group with the lowest life expectancy.

    They recruited more than 1,300 Black men from Oakland, California–area barbershops and flea markets, asked them to fill out a health questionnaire, and gave them a coupon for a free health screening. A pop-up clinic, staffed with 14 Black and non-Black male doctors, was set up to provide the screenings, and the participating men were randomly assigned to a Black or a non-Black doctor. The result: Black men assigned to Black physicians were more likely to get diabetes screenings, flu vaccinations, and other preventive services than those assigned to non-Black doctors.

    Some experts doubt that rapid A/B testing will ever become commonplace in health care. Darren DeWalt, a physician who directs the Institute for Healthcare Quality Improvement at the University of North Carolina, likes the concept, but he thinks most health-care organizations will avoid it for ethical reasons, possibly because people tend to disapprove of randomization, even in the context of something as innocuous as appointment reminders. “People in this country don’t like the idea that they are randomly allocated to something, even something as simple as that,” DeWalt says. “There’s a lot of suspicion around researchers in health care.”

    Others criticize A/B testing as tinkering at the margins. Pierre Barker, the chief scientific officer for the nonprofit Institute for Healthcare Improvement in Boston, believes that significant improvements in health-care delivery require an in-depth analysis of the problem to be solved, which may require many changes to the system. By contrast, rapid randomized controlled trials focus on a single, discrete change—say, the words used in a telephone script—rather than a broader effort to understand why patients don’t get preventive services and what can be done to change that.

    “The attractiveness is how fast it can move, more than the size of the impact,” he says. “I remain to be convinced that you can get more than a small incremental change” from rapid randomized controlled trials.

    It is true that the majority of NYU Langone’s care gaps were not resolved by the new reminders, says Horwitz, but the tests did provide information that led to hundreds of potentially lifesaving services being performed. That is what convinces her that the health-care industry should embrace rapid randomized trials.

    “If you were working for a web company or an airline or any other industry, you would randomize as a matter of course—this is the standard practice,” she says. “But it is still very foreign in health care, and it shouldn’t be.”

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    Lola Butcher

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  • Do You Really Want to Read What Your Doctor Writes About You?

    Do You Really Want to Read What Your Doctor Writes About You?

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    You may not be aware of this, but you can read everything that your doctor writes about you. Go to your patient portal online, click around until you land on notes from your past visits, and read away. This is a recent development, and a big one. Previously, you always had the right to request your medical record from your care providers—an often expensive and sometimes fruitless process—but in April 2021, a new federal rule went into effect, mandating that patients have the legal right to freely and electronically access most kinds of notes written about them by their doctors.

    If you’ve never heard of “open notes,” as this new law is informally called, you’re not the only one. Doctors say that the majority of their patients have no clue. (This certainly has been the case for all of the friends and family I’ve asked.) If you do know about the law, you likely know a lot about it. That’s typically because you’re a doctor—one who now has to navigate a new era of transparency in medicine—or you’re someone who knows a doctor, or you’re a patient who has become intricately familiar with this country’s health system for one reason or another.

    When open notes went into effect, the change was lauded by advocates as part of a greater push toward patient autonomy and away from medical gatekeeping. Previously, hospitals could charge up to hundreds of dollars to release records, if they released them at all. Many doctors, meanwhile, have been far from thrilled about open notes. They’ve argued that this rule will introduce more challenges than benefits for both patients and themselves. At worst, some have fretted, the law will damage people’s trust of doctors and make everyone’s lives worse.

    A year and a half in, however, open notes don’t seem to have done too much of anything. So far, they have neither revolutionized patient care nor sunk America’s medical establishment. Instead, doctors say, open notes have barely shifted the clinical experience at all. Few individual practitioners have been advertising the change, and few patients are seeking it out on their own. We’ve been left with a partially implemented system and a big unresolved question: How much, really, should you want to read what your doctor is writing about you?

    The debate about open notes can be boiled down to a matter of practicality versus idealism. You’d be hard-pressed to find anyone, doctor or otherwise, who argues against transparency for patients in principle. At the same time, few people I spoke with for this article believe that the new rule has been put in place all that smoothly. For care providers, the primary concern has been the trouble that can come with writing notes for a new audience. Notes, generally scribbled in shorthand incomprehensible to the unknowing eye, have traditionally served doctors, and doctors alone. They allowed physicians to stay up to date on their patients and share information with colleagues for input on cases.

    Some doctors told me they worry that open notes could result in distress for patients who read something they don’t understand, and that highly technical language could make something sound worse than it is. Oncology, for instance, can involve an onslaught of potentially concerning terminology. (Psychotherapy notes are exempt from the new rule.) Other doctors fear that valuable information can be lost if they go too far in de-jargonizing notes to make them patient-friendly. Or that de-jargonizing notes is simply unfeasible. “Let’s say you came to me with pain and pointed to your mid-clavicular line. I’d just put ‘MCL,’” says Aldo Peixoto, a nephrologist at Yale. “But if I were writing for you to understand, I’d have to say ‘pain on the top-right portion of her abdomen in the line that runs from the middle of her clavicle,’ and so on. Rather than writing four lines of prose, I could’ve used literally three letters.”

    If that sounds quibbling, consider the trade-offs. Less time for doctors can translate into less time for patients. Many clinicians already write notes well into the evening. Certainly, the pandemic hasn’t helped. Some doctors told me that if they find themselves in a dilemma of either writing notes in less-efficient, plain language or fielding worried patient calls and messages, exhausted practitioners will face yet another burden. And then there’s the matter of trust. Jack Resneck, the president of the American Medical Association, the nation’s largest professional group of doctors and medical students, told me that doctors can need time and space with patients to get them to open up and be receptive to guidance through difficult situations. If these patients were to see notes too soon, Resneck said, they might “immediately flee and not come back to see you.”

    As doctors have spent more time dealing with open notes, many have eased off their strongest objections. Some, including Resneck and the AMA, have warmed up to the new rule as certain exceptions have been granted, such as allowing doctors whose patients have parents or partners with access to their notes to omit certain details from their write-ups for privacy reasons. Other physicians seem to be coming to a somewhat awkward realization: On a practical level, many concerns about how this change affects patients are irrelevant, because most patients don’t yet know they have instant access to their notes in the first place. Every doctor I spoke with for this story told me that their patients were largely unaware. Many doctors and hospitals are not going out of their way to inform people about the new rule, so unless patients are particularly on top of shifting rules within our convoluted health-care system, they’re unlikely to encounter the notes on their own. Kerin Adelson, an oncologist at Yale, admitted she didn’t know how to find notes in her own patient portal. She spent several minutes with me on the phone fumbling through different tabs to locate them.

    Fans of open notes are frustrated that there is not a greater push for awareness. Even acknowledging that the new system has its shortcomings, many argue that the only way to make things better is to get people invested in the access they’ve recently been granted. Lydia Dugdale, a primary-care doctor at Columbia University, worries about ensuring equity. “Things like socioeconomic status, education, literacy: All of those issues affect the degree to which any given patient is going to want to read and correct and interrogate his or her health record,” she told me. Tom Delbanco, a Harvard doctor and one of the co-founders of OpenNotes, an initiative that spearheaded the push for access to doctors’ notes in the U.S., believes that the effort required to refrain from using “bad words” in notes is minor, and that it shouldn’t make any significant demands on clinicians’ schedules. Doctors who are now taking more time to write notes because of the change, he told me, “probably ought to because they’ve been writing lousy notes.”

    Open notes can be valuable for people with chronic conditions and their caregivers, who need to stay in the know. Liz Salmi, the communications and patient-initiatives director at OpenNotes, told me about pulling her full medical record eight years into dealing with brain cancer, before notes were easily and freely available. The document was 4,839 pages. To get a PDF, she said, she had to pay $15 for each DVD it was uploaded to, and her records spanned multiple discs. But the information was worth it: Having access to the record gave Salmi a way to remember all of the crucial bits of information she’d gotten piecemeal from various doctors.

    The fact that many people have no idea open notes exist doesn’t change the deeply personal questions at stake in the debate about whether the notes do more good or harm—questions that everyone must confront in one way or another in dealing with America’s medical system, whether or not they fully realize it. How much information do you truly want about your health, and how much do you trust your doctor to deliver it to you? What is a doctor’s role in informing people about their health?

    Open notes are only part of this conversation. The new law also requires that test results be made immediately available to patients, meaning that patients might see their health information before their physician does. Although this is fine for the majority of tests, problems arise when results are harbingers of more complex, or just bad, news. Doctors I spoke with shared that some of their patients have suffered trauma from learning about their melanoma or pancreatic cancer or their child’s leukemia from an electronic message in the middle of the night, with no doctor to call and talk through the seriousness of that result with. This was the case for Tara Daniels, a digital-marketing consultant who lives near Boston. She’s had leukemia three times, and learned about the third via a late-night notification from her patient portal. Daniels appreciates the convenience of open notes, which help her keep track of her interactions with various doctors. But, she told me, when it comes to instant results, “I still hold a lot of resentment over the fact that I found out from test results, that I had to figure it out myself, before my doctor was able to tell me.”

    As Americans continue to age, get sick, and navigate the health-care system, many of us may become more invested in the idea of open notes. Until they play a more widespread role in people’s lives, however, the most pressing question about whether you truly want instant access to all your medical information might be how it affects your doctor’s life. Many physicians have come around to open notes, or at least have realized that allowing patients to see what has been written about them is not always a huge bother. But the bigger question of just how quickly patients should be able to access medical information, and how soon doctors should be available to help patients process it, continues to plague physicians. The advent of immediate data sharing “has been a major problem in terms of physician quality of life, and that’s eroded across the board,” Peixoto told me. “Doctors don’t want to be connected all the time. They actually have their lives.”

    Where we have landed, then, is an in-between. Patients can read their doctor’s notes and view test results at any hour of the day, but we can access our providers only at certain times. There is likely room for refinement. Allowing a patient to select whether they receive test results from their physician or their portal, or see notes only after their doctor has had the opportunity to walk them through the terminology used, for instance, could make all the difference, some doctors told me. For now, it’s worth asking yourself whether you want to access your patient portal alone, or want to wait until you can get your doctor on the line.

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    Zoya Qureshi

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  • Will We Get Omicron’d Again?

    Will We Get Omicron’d Again?

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    In COVID terms, the middle of last autumn looked a lot like this one. After a rough summer, SARS-CoV-2 infections were down; hospitalizations and deaths were in a relative trough. Kids and workers were back in schools and offices, and another round of COVID shots was rolling out. Things weren’t great … but they weren’t the most terrible they’d ever been. There were vaccines; there were tests; there were drugs. The worst winter development the virus might produce, some experts thought, might involve the spawning of some nasty Delta offshoot.

    Then, one year ago this week, Omicron appeared. The first documented infection with the variant was identified from a specimen collected in South Africa on November 9, 2021; by December 1, public-health officials had detected cases in countries all around the globe, including the United States. Twenty days later, Omicron had unseated Delta as America’s dominant SARS-CoV-2 morph. The new, highly mutated variant could infect just about anyone it encountered—even if they’d already caught a previous version of the virus or gotten several shots of a vaccine. At the beginning of December, and nearly two years into the pandemic, researchers estimated that roughly one-third of Americans had contracted SARS-CoV-2. By the middle of February this year, that proportion had nearly doubled.

    Omicron’s arrival and rapid spread around the world was, and remains, this crisis’s largest inflection point to date. The variant upended scientists’ expectations about SARS-CoV-2’s evolution; it turned having COVID into a horrific norm. Now, as the U.S. approaches its Omicronniversary, conditions may seem ripe for an encore. Some experts worry that the emergence of another Greek-letter variant is overdue. “I’m at a loss as to why we haven’t seen Pi yet,” says Salim Abdool Karim, an epidemiologist at the Centre for the AIDS Programme of Research in South Africa. “I think there’s a chance we still will.”

    A repeat of last winter seems pretty unlikely, experts told me. But with a virus this unpredictable, there’s no guarantee that we won’t see disaster unspool again.

    Read: The worst pediatric care crisis in decades

    A lot has changed since last year. For one thing, population immunity to SARS-CoV-2 is higher. Far more people have received additional doses of vaccine, many of them quite recently, with an updated formula that’s better tailored to the variants du jour. Plus, at this point, nearly every American has been infected at least once—and most of them with at least some subvariant of Omicron, says Shaun Truelove, an epidemiologist and a modeler at Johns Hopkins University. These multiple layers of protection make it more challenging for the average SARS-CoV-2 spin-off to severely sicken people. They also raise transmission obstacles for the coronavirus in whatever form it takes.

    Omicron does seem to have ushered in “a different phase of the pandemic,” says Verity Hill, an evolutionary virologist at Yale. The variants that took over different parts of the world in 2021 rose in a rapid succession of monarchies: Alpha, Beta, Gamma, Delta. But in the U.S. and elsewhere, 2022 has so far been an oligarchy of Omicron offshoots. Perhaps the members of the Omicron lineage are already so good at moving among hosts that the virus hasn’t needed a major upgrade since.

    If that’s the case, SARS-CoV-2 may end up a victim of its own success. The Omicron subvariants BQ.1 and BQ1.1 appear capable of spreading up to twice as fast as BA.5, according to laboratory data. But their takeover in the U.S. has been slow and halting, perhaps because they’re slogging through a morass of immunity to the Omicron family. That alone makes it less likely that any single Omicron subvariant will re-create the sudden surge of late 2021 anytime soon. In South Africa and the United Kingdom, for instance, different iterations of Omicron seem to have triggered just modest bumps in sickness in recent months. (That said, those countries—with their distinct demographics and vaccination and infection histories—aren’t a perfect bellwether for the U.S.)

    For an Omicron 2021 redux to happen, SARS-CoV-2 might need to undergo a substantial genetic makeover—which Abdool Karim thinks would be very difficult for the virus to manage. In theory, there are only so many ways that SARS-CoV-2 can scramble its appearance while retaining its ability to latch onto our cells; by now, its options should be somewhat slimmed. And the longer the Omicron line of succession persists, the tougher it may be to upend. “It’s just getting harder to compete,” Hill told me.

    But the world has gotten overconfident before. Even if SARS-CoV-2 doesn’t produce a brand-new version of itself, low uptake of the bivalent vaccine could allow our defenses to wither, driving a surge all the same, Truelove told me. Our transmission-dampening behaviors too are slacker than they’ve been since the pandemic’s start. This time last year, 50 to 60 percent of Americans were regularly wearing masks. The latest figures, many of them several months old, are closer to 30 percent. “The more opportunities you give the virus to get into somebody,” Hill said, “the more chances you give it to get the group of mutations that could help it take off.” Immunocompromised people who remain chronically infected with older variants, such as Alpha or Delta, could also become the sites of new viral offshoots. (That may be how the world got Omicron to begin with.)

    Going on probability alone, “it seems more likely that we’ll keep going with these subvariants of Omicron rather than dealing with something wholly brand-new,” says Maia Majumder, an epidemiologist at Boston Children’s Hospital. But Lauren Ancel Meyers, an infectious-disease modeler at the University of Texas at Austin, warns that plenty of uncertainty remains. “What we don’t have is a really data-driven model right now that tells us if, when, where, and what kind of variants will be emerging in the coming months and years,” she told me. Our window into the future is only getting foggier too as fewer people submit their test results—or take any test at all—and surveillance systems continue to go offline.

    It wouldn’t take another Omicron-type event to hurl us into disarray. Maybe none of the Omicron subvariants currently jockeying for control will surge ahead of the pack. But several of them might yet drive regional epidemics, Majumder told me, depending on the local nitty-gritty of who’s susceptible to what. And as winter looms, some of the biggest holes in our COVID shield remain unpatched. People who are immunocompromised are losing their last monoclonal-antibody treatments, and although powerful drugs exist to slash the risk of severe disease and death, useful preventives and treatments for long COVID remain sparse.

    Read: The end of Evusheld

    Our nation’s capacity to handle new COVID cases is also low, Majumder said. Already, hospitals around the country are being inundated with other respiratory viruses—RSV, flu, rhinovirus, enterovirus—all while COVID is still kicking in the background. “If flu has taken over hospital beds,” says Srini Venkatramanan, an infectious-disease modeler at the University of Virginia, even a low-key wave will “feel like it’s having a much bigger impact.”

    As the country approaches its second holiday season with Omicron on deck, this version of the virus may “feel familiar,” Majumder pointed out. “I think people perceive the current circumstances to be safer than they were last year,” she said—and certainly, some of them are. But the fact that Omicron has lingered is not entirely a comfort. It is also, in its way, a reminder of how bad things once were, and how bad they could still get.

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    Katherine J. Wu

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  • What Doctors Still Don’t Understand About Long COVID

    What Doctors Still Don’t Understand About Long COVID

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    As a pulmonary specialist, I spend most of my clinical time in the hospital—which, during pandemic surges, has meant many long days treating critically ill COVID-19 patients in the ICU. But I also work in an outpatient clinic, where I also treat those same sorts of patients after they’re discharged: people who survived weeks-long hospitalizations but have been dealing ever since with lung damage. Such patients often face the same social and economic factors that made them vulnerable to COVID-19 to begin with, and they require attentive care.

    Patients like these undoubtedly suffer what researchers have been calling post-acute sequelae of SARS-CoV-2, or PASC—which, according to one highly publicized recent CDC study, afflicts some 20 percent of COVID-19 survivors ages 18 to 64. Other studies have yielded lower estimates of the condition also called long COVID, and while differences in study methodology account for some of this variability, there’s a more fundamental issue eluding efforts to uncover the one “true” estimate of the likelihood of this condition. Quite simply, long COVID isn’t any one thing.

    From the April 2021 issue: Unlocking the mysteries of long COVID

    The wide spectrum of conditions that fall under the umbrella of long COVID impedes researchers’ ability to interpret estimates of national prevalence based on surveys of symptoms, which conflate different problems with different causes. More importantly, however, an incomplete and constrained perspective on what long COVID is or isn’t limits Americans’ understanding of who is suffering and why, and of what we can do to improve patients’ lives today.

    The cases of long COVID that turn up in news reports, the medical literature, and in the offices of doctors like me fall into a few rough (and sometimes overlapping) categories. The first seems most readily explainable: the combination of organ damage, often profound physical debilitation, and poor mental health inflicted by severe pneumonia and resultant critical illness. This serious long-term COVID-19 complication gets relatively little media attention despite its severity. The coronavirus can cause acute respiratory distress syndrome, the gravest form of pneumonia, which can in turn provoke a spiral of inflammation and injury that can end up taking down virtually every organ. I have seen many such complications in the ICU: failing hearts, collapsed lungs, failed kidneys, brain hemorrhages, limbs cut off from blood flow, and more. More than 7 million COVID-19 hospitalizations occurred in the United States before the Omicron wave, suggesting that millions could be left with damaged lungs or complications of critical illness. Whether these patients’ needs for care and rehabilitation are being adequately (and equitably) met is unclear: Ensuring that they are is an urgent priority.

    Recently, a second category of long COVID has made headlines. It includes the new onset of recognized medical conditions—like heart disease, a stroke, or a blood clot—after a mild COVID-19 infection. It might seem odd that an upper respiratory tract infection could trigger a heart attack. Yet this pattern has been well described after other common respiratory-virus infections, particularly influenza. Similarly, various types of infections can lead to blood clots in the legs, which can travel (dangerously) to the lungs. Respiratory infections are not hermetically sealed from the rest of the body; acute inflammation arising in one location can sometimes have consequences elsewhere.

    But mild COVID-19 is so common that measuring the prevalence of such complications—which also regularly occur in people without COVID-19—can be tricky. Well-controlled investigations are needed to disentangle causation and correlation, particularly because social disadvantage is associated both with COVID exposure and illnesses of basically every organ system. Some such studies, which analyzed giant electronic-health-record databases, have suggested that even mild COVID-19 is at least correlated with a startlingly wide spectrum of seemingly every illness, including diabetes, asthma, and kidney failure; basically every type of heart disease; alcohol-, benzodiazepine-, and opioid-use disorders; and much more.

    To be clear, this research generally suggests that such complications occur far less often after mild COVID-19 cases than severe ones, and the extent to which the coronavirus causes each such complication remains unclear. In other words, we can surmise that at least some of these complications (particularly vascular complications, which have been well-described in many studies) are likely a consequence of COVID-19, but we can’t say with certainty how many. And more importantly, we don’t yet understand why some people with mild COVID recover easily while others go on to experience such complications. However, an estimated 81 percent of Americans have now been infected at least once, so the public-health ramifications are large even if COVID causes only some of the aforementioned recognized diseases, and even if our individual risk of complications after a mild infection is modest. Regardless of cause, patients who do develop any such chronic diseases require attentive, ongoing medical care—a challenge in a nation where 30 million are uninsured and even more underinsured.

    Another category of long COVID is something rather more quotidian, if still very distressing for those experiencing it: respiratory symptoms that last longer than expected after an acute upper-respiratory infection caused by the coronavirus, but that are not associated with lung damage, critical illness, or a new diagnosis like a heart attack or diabetes. Symptoms such as shortness of breath and chest pain are common months after run-of-the-mill pneumonia unconnected to the coronavirus, for instance, while many patients who contract non-COVID-related upper respiratory infections subsequently report a protracted cough or a lingering loss of their sense of smell. That a COVID-related airway infection sometimes has similar consequences only stands to reason.

    Read: Long-haulers are fighting for their future

    However, none of these may be what most people think of when long COVID is invoked. Some may even argue that such syndromes are not, in fact, long COVID at all, even if they cause long-term suffering. “Long Covid is not a condition for which there are currently accepted objective diagnostic tests or biomarkers,” wrote Steven Phillips and Michelle Williams in the New England Journal of Medicine. “It is not blood clots, myocarditis, multisystem inflammatory disease, pneumonia, or any number of well-characterized conditions caused by Covid-19.” Instead, for some the term may invoke a chronic illness—a complex of numerous unexplained, potentially debilitating symptoms—even among those who may barely have felt sick with COVID in the acute phase. Symptoms may vary widely, and include severe fatigue, cognitive issues often described as brain fog, shortness of breath, “internal tremors,” gastrointestinal problems, palpitations, dizziness, and many other issues around the body—all typically following a mild acute respiratory infection. If the other forms of long COVID seem more easily explainable, this type is often characterized as a medical mystery.

    Teasing apart which kind of long COVID a person has is important, both to advance our understanding of the illness and to best care for people. Yet lumping and splitting varieties of long COVID into categories is not easy. A given patient’s case might have features of more than one of the types that I’ve described here. Some patient advocates and researchers have tended to exclude patients in the first category—that is, survivors of protracted critical illness—from their conception of COVID long-haulers. I would argue that, insofar as we define long COVID as lasting damage and symptoms imposed by SARS-CoV-2, the full variety of severe long-term manifestations should be included in its scope. “Clinical phenotyping” studies now under way may eventually help scientists and doctors better understand the needs of different types of patients, but patients in all categories deserve better care today.

    The biological mechanisms by which an acute coronavirus upper respiratory infection might lead to a bewildering range of chronic, burdensome symptoms even in the aftermath of mild infections are debated. Some scientists, for instance, believe that the virus causes an autoimmune disease akin to lupus. Meanwhile, one group of researchers has argued that even a mild respiratory infection from SARS-CoV-2 causes tiny clots to block tiny blood vessels all over the body, depriving tissues of oxygen throughout the body. Still others believe that the coronavirus causes a chronic infection, as such viruses as HIV or hepatitis C do. Meanwhile, some have emphasized the possibility of structural brain damage. While some published studies have provided support for each theory, none has been adequately validated as a central unifying thesis. Each is, however, worth continuing to explore.

    A recently published investigation, conducted at the National Institutes of Health, suggests that clinicians and scientists should consider additional possibilities as potential drivers of symptoms for at least some patients. The researchers found far higher levels of physical symptoms and mental distress among subjects who had had COVID (many with long COVID) than among those who had not. Yet symptoms could not be explained by basically any test results: Researchers found effectively no substantive differences in markers of inflammation or immune activation, in objective neurocognitive testing, or in heart, lung, liver, or kidney function. And yet these patients were suffering from such symptoms as fatigue, shortness of breath, concentration and memory problems, chest pain, and more. Notably, researchers did not identify viral persistence in the bodies of patients reporting troublesome symptoms.

    What this means in practice is that there are some people suffering from long COVID symptoms without evidence of structural damage to the body, autoimmunity, or chronic infection. Psychosocial strain and suffering, moreover, appears common in this population. Even pointing this out is sensitive territory—it leads some people to wrongly suggest that long COVID is less severe or concerning than those suffering from it describe, or even to question the reality of the illness. And, understandably, the invocation of psychosocial factors as potential contributing factors to suffering for some individuals may make patients feel as though they are being second-guessed. The reality, though, is that psychosocial strain is an important driver of physical symptoms and suffering—one that clinicians should treat with empathy. All suffering, after all, is ultimately produced and perceived in one place: our brain.

    Severe depression, for instance, can inflict debilitating and severe physical symptoms of every sort, including crushing fatigue and withering brain fog, and is itself linked to having had COVID-19. And notably, a recent study in JAMA Psychiatry found that pre-infection psychosocial distress—e.g. depression, anxiety, or loneliness—was associated with a 30–50 percent increase in the risk of long COVID among those infected, even after adjustment for various factors. A false separation of brain and body has long plagued medicine, but it does not reflect biological reality: After all, diverse neuropsychiatric processes are associated with numerous “physical” changes, ranging from reduced blood flow to the brain to high (or low) levels of the stress hormone cortisol.

    Illnesses of any cause that result in protracted time off one’s feet can also instigate (likely in conjunction with other factors) reversible cardiovascular deconditioning, wherein the blood volume contracts and the amount of blood ejected by the heart with each squeeze falls—changes that can lead to a racing heart rate or faintness when standing, as decades of studies have shown. Diverse neurological symptoms can also be produced by a glitch in the function rather than the structure of the brain—or what has been described as problems of brain “software” rather than “hardware”—resulting in conditions known as functional neurological disorders. Similar glitches, known as functional respiratory disorders, can disturb our breathing patterns or cause shortness of breath, even when our lungs are structurally normal. My point is not to speculate on some overarching hypothesis to explain all symptoms among all patients with long COVID. The whole point is that there’s unlikely to be just one. And there is still much to learn.

    Research is underway to better understand this spectrum of illnesses, and their causes. But whichever diverse factors might be contributing to patients’ symptoms, we can take steps—both among clinicians and as a society—to improve lives now. Social supports can be as important as medical interventions: For those unable to work, qualification for disability assistance should not depend on a particular lab or lung-function test result. All patients with long-COVID symptoms deserve and require high-quality medical care without onerous cost barriers that may bankrupt them, which further compounds suffering. Universal healthcare is, that is to say, desperately needed to respond to this pandemic and its aftermath.

    Additionally, while no specific long-COVID medications have emerged, some treatments may be helpful for improving certain symptoms regardless of the specific type of illness, such as physical rehabilitative treatments for those with shortness of breath or reduced exercise tolerance. Ensuring universal access to such specialized rehabilitative care is essential as we enter the next stage of this pandemic. So is helping patients avoid the emerging cottage industry of dodgy providers hawking unproven long-COVID therapies. Health-care professionals also need more education about the broad spectrum of COVID-19-related issues, both to improve care and reduce stigmatization of patients with all types of this illness.

    Read: The pandemic after the pandemic

    Doctors and scientists still have much to learn about symptoms that continue—or first turn up—months or weeks after an initial COVID infection. What’s clear today is that long COVID can be many different things. That may confound our efforts to categorize it and discuss its implications, but the sheer variety should not get in the way of care for all who are suffering.

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    Adam Gaffney

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