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Doctor’s Checklist for Treating Long COVID Patients

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April 4, 2023 – Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID. 

“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”

McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she says many doctors still don’t know the hallmark symptoms of the condition or how to treat it. 

“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”

The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it. 

While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID. But with no standard diagnostic tests, treatment guidelines, standard care recommendations, and a large range of symptoms the condition can produce, doctors may not know what to look for, nor how to help patients.

“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center in New York City. “It’s a complicated disease that can impact every organ system of the body.”

Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them:

  • The key systems and organs impacted by the disease
  • The most common symptoms
  • Useful therapeutic options for symptom management that have been found to help people with long COVID
  • The best heathy lifestyle choices that doctors can recommend to help their patients 

Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors. 

Key Systems, Organs Impacted                                                                                                 

About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that McCorkell helped co-author. But more than 3 years into the pandemic, much about the condition is still a mystery. 

COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in the journal Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started. 

“We know that there are dozens of symptoms across multiple organ systems,” said McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”

A paper published last December in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups: 

  • Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
  • Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
  • In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
  • In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting

There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.

This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at NYU Langone Medical Center who also specializes in treating patients with long COVID. 

But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.

Checklist of Symptoms 

Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID. They include:

Post-exertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York City, who says that he sees it in about 90% of patients who come to his long COVID clinic. 

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or two after the activity, but it can last for days, and sometimes weeks. 

“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”

Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. 

“In my practice, about 80% of patients meet criteria for dysautonomia,” said Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.

One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.

Exercise intolerance. A 2022 review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors. 

“This is especially important because it can’t be explained just by deconditioning,” said Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause post-exertional malaise, which sets patients back and delays recovery.”

While long COVID can cause dozens of symptoms, a paper McCorkell co-authored zeroed in on some of the most common ones:

  • Chest pain
  • Heart palpitations
  • Coughing
  • Shortness of breath
  • Belly pain
  • Nausea
  • Problems with mental skills
  • Fatigue
  • Disordered sleep
  • Memory loss
  • Ringing in the ears (tinnitus)
  • Erectile dysfunction
  • Irregular menstruation
  • Worsened premenstrual syndrome

While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others. 

“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.” 

It’s not just what symptoms are, but when they began to occur, he added. 

“Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or two after getting sick.”

Can You Prevent Long COVID?

You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a 2022 study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%. 

In addition, a February study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: 

  • Healthy weight (a BMI between 18.5 and 24.7)
  • Never smoker
  • Moderate alcohol consumption
  • A high-quality diet
  • Seven to 9 hours of sleep a night
  • At least 150 minutes per week of physical activity

But McCorkell noted that she herself had a healthy pre-infection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.

“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”

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Qure.ai joins Medtronic India’s stroke care initiative

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Qure.ai is the latest technology partner to join Medtronic’s initiative in advancing stroke care management in India. 

According to a press statement, their partnership aims to provide AI solutions to comprehensive stroke centres and primary stroke centres. They also seek to establish a hub-and-spoke network that will assist in faster identification, decision-making, and triaging of stroke patients.

Qure.ai offers AI solutions that help streamline the stroke care pathway. One of its flagship products, qER, delivers quick reading and interpretation of heart CT scans with a turnaround time of two minutes. This information is then stored on the Qure app, a mobile platform that can connect all multidisciplinary teams from different hospitals.

WHY IT MATTERS

Each year, almost two million people in India are affected by stroke. And with stroke, time is of the essence. According to Medtronic India, using AI tools can help reduce delays and gaps in the management of stroke care, from diagnosis to treatment.

THE LARGER TREND

Medtronic India has been partnering with health organisations to promote advanced stroke care management via a hub-and-spoke network to meet rising care demand. Through this model, a team of stroke experts in a “hub” uses AI to analyse CT scans done at a partner or “spoke” health facility, usually from rural locations, thereby delivering timely diagnosis and treatment to stroke patients. 

In February, it onboarded Zydus Hospitals-Ahmedabad to its initiative to support stroke patients in the western coastal state of Gujarat. Last year, Aster MIMS Hospital also joined the programme to support patients in Kerala.

ON THE RECORD

“We are thrilled to collaborate with Qure.ai to support surgeons in diagnosing and treating stroke by enabling quicker decision-making, streamlining data sharing between two hospitals, and improving efficiencies so that more stroke patients in India can be treated within the critical time window,” Medtronic India president and managing director Michael Blackwell commented. 

“Partnering with Medtronic India, we will integrate Qure.ai’s AI-powered neuro-critical solutions suite to detect and manage stroke more effectively. Our cutting-edge technology utilises advanced algorithms to analyse medical images so that healthcare providers can make informed decisions with improved diagnostic accuracy and speed. Our collaboration will also enhance operational efficiency in hospitals, optimising hub-spoke pathways. The partnership with Medtronic is another important pillar in our commitment to [utilising] the power of AI to enhance patient care and bring equitable healthcare to all,” Qure.ai CEO and co-founder Prashant Warier also said in a comment.

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Fatigue Is Common Among Older Adults, and It Has Many Possible Causes

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By Judith Graham

Tuesday, April 04, 2023 (Kaiser News) — Nothing prepared Linda C. Johnson of Indianapolis for the fatigue that descended on her after a diagnosis of stage 4 lung cancer in early 2020.

Initially, Johnson, now 77, thought she was depressed. She could barely summon the energy to get dressed in the morning. Some days, she couldn’t get out of bed.

But as she began to get her affairs in order, Johnson realized something else was going on. However long she slept the night before, she woke up exhausted. She felt depleted, even if she didn’t do much during the day.

“People would tell me, ‘You know, you’re getting old.’ And that wasn’t helpful at all. Because then you feel there’s nothing you can do mentally or physically to deal with this,” she told me.

Fatigue is a common companion of many illnesses that beset older adults: heart disease, cancer, rheumatoid arthritis, lung disease, kidney disease, and neurological conditions like multiple sclerosis, among others. It’s one of the most common symptoms associated with chronic illness, affecting 40% to 74% of older people living with these conditions, according to a 2021 review by researchers at the University of Massachusetts.

This is more than exhaustion after an extremely busy day or a night of poor sleep. It’s a persistent whole-body feeling of having no energy, even with minimal or no exertion. “I feel like I have a drained battery pretty much all of the time,” wrote a user named Renee in a Facebook group for people with polycythemia vera, a rare blood cancer. “It’s sort of like being a wrung-out dish rag.”

Fatigue doesn’t represent “a day when you’re tired; it’s a couple of weeks or a couple of months when you’re tired,” said Dr. Kurt Kroenke, a research scientist at the Regenstrief Institute in Indianapolis, which specializes in medical research, and a professor at Indiana University’s School of Medicine.

When he and colleagues queried nearly 3,500 older patients at a large primary care clinic in Indianapolis about bothersome symptoms, 55% listed fatigue — second only to musculoskeletal pain (65%) and more than back pain (45%) and shortness of breath (41%).

Separately, a 2010 study in the Journal of the American Geriatrics Society estimated that 31% of people 51 and older reported being fatigued in the past week.

The impact can be profound. Fatigue is the leading reason for restricted activity in people 70 and older, according to a 2001 study by researchers at Yale. Other studies have linked fatigue with impaired mobility, limitations in people’s abilities to perform daily activities, the onset or worsening of disability, and earlier death.

What often happens is older adults with fatigue stop being active and become deconditioned, which leads to muscle loss and weakness, which heightens fatigue. “It becomes a vicious cycle that contributes to things like depression, which can make you more fatigued,” said Dr. Jean Kutner, a professor of medicine and chief medical officer at the University of Colorado Hospital.

To stop that from happening, Johnson came up with a plan after learning her lung cancer had returned. Every morning, she set small goals for herself. One day, she’d get up and wash her face. The next, she’d take a shower. Another day, she’d go to the grocery store. After each activity, she’d rest.

In the three years since her cancer came back, Johnson’s fatigue has been constant. But “I’m functioning better,” she told me, because she’s learned how to pace herself and find things that motivate her, like teaching a virtual class to students training to be teachers and getting exercise under the supervision of a personal trainer.

When should older adults be concerned about fatigue? “If someone has been doing OK but is now feeling fatigued all the time, it’s important to get an evaluation,” said Dr. Holly Yang, a physician at Scripps Mercy Hospital in San Diego and incoming board president of the American Academy of Hospice and Palliative Medicine.

“Fatigue is an alarm signal that something is wrong with the body but it’s rarely one thing. Usually, several things need to be addressed,” said Dr. Ardeshir Hashmi, section chief of the Center for Geriatric Medicine at the Cleveland Clinic.

Among the items physicians should check: Are your thyroid levels normal? Are you having trouble with sleep? If you have underlying medical conditions, are they well controlled? Do you have an underlying infection? Are you chronically dehydrated? Do you have anemia (a deficiency of red blood cells or hemoglobin), an electrolyte imbalance, or low levels of testosterone? Are you eating enough protein? Have you been feeling more anxious or depressed recently? And might medications you’re taking be contributing to fatigue?

“The medications and doses may be the same, but your body’s ability to metabolize those medications and clear them from your system may have changed,” Hashmi said, noting that such changes in the body’s metabolic activity are common as people become older.

Many potential contributors to fatigue can be addressed. But much of the time, reasons for fatigue can’t be explained by an underlying medical condition.

That happened to Teresa Goodell, 64, a retired nurse who lives just outside Portland, Oregon. During a December visit to Arizona, she suddenly found herself exhausted and short of breath while on a hike, even though she was in good physical condition. At an urgent care facility, she was diagnosed with an asthma exacerbation and given steroids, but they didn’t help.

Soon, Goodell was spending hours each day in bed, overcome by profound tiredness and weakness. Even small activities wore her out. But none of the medical tests she received in Arizona and subsequently in Portland — a chest X-ray and CT scan, blood work, a cardiac stress test — showed abnormalities.

“There was no objective evidence of illness, and that makes it hard for anybody to believe you’re sick,” she told me.

Goodell started visiting long covid web sites and chat rooms for people with chronic fatigue syndrome. Today, she’s convinced she has post-viral syndrome from an infection. One of the most common symptoms of long covid is fatigue that interferes with daily life, according to the Centers for Disease Control and Prevention.

There are several strategies for dealing with persistent fatigue. In cancer patients, “the best evidence favors physical activity such as tai chi, yoga, walking, or low-impact exercises,” said Dr. Christian Sinclair, an associate professor of palliative medicine at the University of Kansas Health System. The goal is to “gradually stretch patients’ stamina,” he said.

With long covid, however, doing too much too soon can backfire by causing “post-exertional malaise.” Pacing one’s activities is often recommended: doing only what’s most important, when one’s energy level is highest, and resting afterward. “You learn how to set realistic goals,” said Dr. Andrew Esch, senior education advisor at the Center to Advance Palliative Care.

Cognitive behavioral therapy can help older adults with fatigue learn how to adjust expectations and address intrusive thoughts such as, “I should be able to do more.” At the University of Texas MD Anderson Cancer Center, management plans for older patients with fatigue typically include strategies to address physical activity, sleep health, nutrition, emotional health, and support from family and friends.

“So much of fatigue management is about forming new habits,” said Dr. Ishwaria Subbiah, a palliative care and integrative medicine physician at MD Anderson. “It’s important to recognize that this doesn’t happen right away: It takes time.”

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care, and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Study: Race, income linked to wearable-based research participation among children

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Black children and kids from lower socioeconomic backgrounds were less likely to participate, share data and engage with research that used wearable devices, according to a study published in JAMA Network Open. 

The study included wearable device data collected from more than 10,000 children ages 11 through 13 years old in the ongoing Adolescent Brain and Cognitive Development (ABCD) Study. 

There was a 59% lower relative proportion of Black children in the wearable device group than in the group that didn’t use wearables. But the study had a 132% higher relative proportion of white children in the wearable group. 

Researchers also found a significantly lower proportion of children with household incomes less than $24,999 per year in the wearables cohort. Children of parents who had a lower educational attainment (equivalent to late high school) were less likely to join the wearable group too. 

The study also found differences in retention for Black children and those in lower socioeconomic groups. Black children shared data for 16 days compared with 21 days for white kids. Those who lived in households with incomes of less than $25,000 were retained for only 15 days, while those whose parents had completed upper high school shared wearable data for 17 days. However, children with parents who had finished an equivalent of an associate’s degree were retained for 20 days. 

Children from racial and ethnic minority groups also wore their devices for less time compared with their white counterparts, and kids from the southwestern region of the U.S. had lower wear times as well. Researchers also found wear times were lower for children who were recruited during the COVID-19 pandemic compared with those who joined before the pandemic. 

“The findings of this study suggest that without factoring in the broader social determinants of health that may affect individual and group experiences and participation in research, inequities in data collection using wearable technologies may continue to exist, especially for youths belonging to racial and ethnic minority groups,” the study’s authors wrote. 

WHY IT MATTERS

Racial and ethnic minorities are already underrepresented in clinical trials, which could affect how well drugs and devices work for these populations. 

The study’s authors note that consumer wearable devices have the potential to allow for early detection and intervention for health concerns, but some studies have found their heart rate data is less reliable for darker skin tones. Still, as more research includes consumer wearables, it’s necessary to ensure equitable access to these studies.

“Future wearable device research should address various sociotechnical and human factors to improve wearable device–based data collection. These can range from participants’ and their families’ understanding of the study, consent and assent language, the potential influence of personal data sharing, its secondary usage and their overall trust in the study team,” researchers wrote. “Characteristics of the study team may also inform whether participants opt in to studies, as racial and ethnic minority communities are more likely to trust those that are like them and understand their experiences.”

Jeremy Petch will offer more detail at the HIMSS23 session “Opening the Black Box: Promise and Limitations of Explainable AI.” It’s scheduled for Wednesday, April 19 at 10 a.m. – 11 a.m. CT at the South Building, Level 5, room S503.

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7-Year-Old With Disability Has PTSD After Restraints Used At School, Lawsuit Says

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A lawsuit alleges that repeated restraints at school left a girl who has a developmental disability with post-traumatic stress disorder. (Ting Shen/The Dallas Morning News/TNS)

A deaf family is suing a Washington school district after they say their child, who has a disability, was repeatedly restrained at school, causing her to develop post-traumatic stress disorder, their lawyer said.

The child, who is now 7 years old and has a developmental disability, was subjected to “excessive restraint and isolation” at her elementary school beginning in September 2021, according to the lawsuit filed recently.

Her mother and grandmother, who are deaf, were not adequately informed about the use of restraints on their child and were not allowed into the school to observe her class, the lawsuit says. The family requested to remain anonymous to protect their child’s privacy, according to their lawyer, Whitney Hill of Cedar Law.

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Hill told McClatchy News that teachers and administrators at the child’s school, Lockwood Elementary, which is in the Northshore School District, did not properly fill out the required reports each time the student was restrained and did not take steps to appropriately communicate with the child’s mother, who uses American Sign Language.

“At the end of the day, it was really clear to us that the district was scared, and they knew they messed up,” Hill said.

A spokesperson for the school district, which is headquartered in Bothell, about 20 miles northeast of Seattle, did not respond to a request for comment from McClatchy News.

In an email sent to the Everett Herald, a district spokeswoman said administrators were reviewing the lawsuit.

“Northshore School District is committed to ensuring the well-being and safety of each and every one of our students,” the statement says, according to the outlet. “We take the nature of these allegations very seriously. The district cannot further comment on ongoing litigation.”

‘A very dangerous practice’

The restraints used on the kindergarten student were “so frequent and severe that they often resulted in physical injury and/or distress,” the lawsuit says.

Restraint is when a student is “physically immobilized,” and isolation is when a student is “placed in a small, confined room” alone, according to the American Civil Liberties Union. In Washington, school staff are only allowed to restrain and isolate students when their behavior poses an “imminent likelihood of serious harm,” per the ACLU.

The first time the student was restrained occurred on Sept. 7, 2021, after an incident in the lunchroom, the lawsuit says. She became “so upset and overstimulated” that she vomited while in the restraint, according to the lawsuit.

Lawyers later obtained text messages between staff members who expressed “disappointment” at the fact the student vomited from stress and not COVID-19, which would have required her to quarantine at home for at least 10 days, the lawsuit says.

Restraints were also often used on the student when she did not pose a threat to herself or others, according to the lawsuit.

On Jan. 12, 2022, the student was restrained on three separate occasions for “refusing to wear a (face) mask in close proximity to her peers,” the lawsuit says. Both the student and her teacher were injured because of the restraint, according to the lawsuit.

Hill described the use of restraint and isolation as a “very dangerous practice. I’ve almost never seen restraint and isolation used effectively.”

The student, who by January 2022 was being restrained for “long periods of time, multiple times per day,” was later diagnosed with post-traumatic stress disorder as a result, the lawsuit says.

Lack of communication

The district was “actively working to prevent” the student’s family from knowing what their child was going through at school, the lawsuit says.

District officials did not honor the student’s mother’s repeated requests to include the student’s grandmother on all communications so that she could help translate them into American Sign Language, the lawsuit says. The district also denied the mother and grandmother’s request to observe their child’s classroom and declined to provide a qualified American Sign Language interpreter, according to the lawsuit.

Hill said it is still unclear in many cases what was used to restrain the child and how long she was restrained because the district did not fill out adequate reports.

“It’s really disturbing that the district really still has not come forward with any explanation of what happened or details or an apology to the family,” she said.

Once the family obtained a lawyer, the district filed a “purposefully misleading” report with Child Protective Services about the student’s behavior, according to the lawsuit.

“What shocked me was the extent that the district went to try to retaliate against the parents, who only were just trying to get information from the school about what was happening to their child,” Hill said.

Once the family hired attorneys, district officials agreed to allow the student to change schools, and her behavior immediately improved, the lawsuit says.

“She’s now participating in general education more than 70% of her school day,” Hill said. “She enjoys being there, she’s excited to go.”

The lawsuit is seeking damages in an amount that is yet to be determined.

“The parents are also very interested in taking steps to ensure that this doesn’t happen to other families,” Hill said.

© 2023 McClatchy News
Distributed by Tribune Content Agency, LLC

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More Research, Advocacy Can Improve PAH Disparities

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Photo Credit: omgimages / Getty Images

SOURCES:

Chest: “Delay in Recognition of Pulmonary Arterial Hypertension,” “Race and Sex Differences in Response to Endothelin Receptor Antagonists for Pulmonary Arterial Hypertension.”

CDC: “Health Disparities.”

American Lung Association: “Learn About Pulmonary Arterial Hypertension.”

Journal of the American Heart Association: “Mortality in Pulmonary Arterial Hypertension in the Modern Era: Early Insights From the Pulmonary Hypertension Association Registry.”

Kingman, M., et al. Increasing Awareness about Pulmonary Arterial Hypertension Treatment for Nurses. StatPearls Publishing, 2022.

Mayo Clinic: “Pulmonary Hypertension.”

Charles Vega, MD, clinical professor of family medicine, University of California, Irvine.

Stephen C. Mathai, MD, associate professor, The Johns Hopkins Pulmonary Hypertension Program.

Frontiers in Aging: “Sex Differences in Pulmonary Hypertension.”

Advances in Pulmonary Hypertension: “Health Disparities in Pulmonary Arterial Hypertension and the Impact of the COVID-19 Pandemic.”

European Respiratory Review: “Sex and Gender in Pulmonary Arterial Hypertension.”

Pulmonary Circulation: “Racial and Ethnic Differences in Pulmonary Arterial Hypertension,” “Time to Diagnosis of Pulmonary Hypertension and Diagnostic Burden: A Retrospective Analysis of Nationwide U.S. Healthcare Data.”

Current Problems in Cardiology: “Urban-Rural Disparities in Pulmonary Hypertension-Related Mortality Between 2004 and 2019: A Call to Improve Access to Specialty Care Centers for Rural Residents in the United States.”

Mei-Sing Ong, PhD, assistant professor, Harvard Pilgrim Health Care.

European Respiratory Journal: “Traffic Exposures, Air Pollution and Outcomes in Pulmonary Arterial Hypertension: A UK Cohort Study Analysis.”

Elizabeth Joseloff, PhD, vice president of quality care and research, Pulmonary Hypertension Association. 

Annals of the American Thoracic Society: “Secular and Regional Trends among Pulmonary Arterial Hypertension Clinical Trial Participants.”

Proceedings of the American Thoracic Society: “Patients with Pulmonary Arterial Hypertension in Clinical Trials: Who Are They?”

American Journal of Respiratory and Critical Care Medicine: “Health Disparities in Patients with Pulmonary Arterial Hypertension: A Blueprint for Action. An Official American Thoracic Society Statement.”

Frontiers in Drug Discovery: “Novel and Emerging Therapies in Pulmonary Arterial Hypertension.”

For Long-Term Treatment of Pulmonary Arterial Hypertension, Canadian Agency for Drugs and Technologies in Health, 2015.

BMC Health Services Research: “The Economic Burden of Pulmonary Arterial Hypertension (PAH) in the U.S. on Payers and Patients.”

Pulmonary Hypertension Association: “Advocacy Action Center.”

The American Journal of Managed Care: “Health Insurance and Racial Disparities in Pulmonary Hypertension Outcomes.”

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Parents Push For Adult-Size Changing Tables In Public Restrooms

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Tram Nguyen carries her daughter, Sadie Sava, 7, from her wheelchair to an adult changing table in a family bathroom at the Mall of America in Bloomington, Minn. in March. (Renée Jones Schneider/Star Tribune/TNS)

MINNEAPOLIS — Tram Nguyen has used restroom floors, the grass at city parks and the back of her van to change her 7-year-old daughter’s diapers.

Her daughter, Sadie, who was born with a chromosomal abnormality that limits her mobility, has outgrown the infant changing tables in most public restrooms.

“It’s disgusting and undignified to have to lay your daughter on a bathroom floor,” said Nguyen, a former retail executive and stay-at-home mother from Minneapolis. “My daughter needs to get out in the community, and not having a safe, private place to change her diapers is a major obstacle.”

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Nguyen has joined a burgeoning campaign to make public restrooms more accessible to larger children and adults who have difficulty using toilets because of their disabilities. They are calling on the Minnesota legislature to enact a proposed law that would require adult-size changing tables in public restrooms — a change that would help reduce the isolation that often comes with living with a disability.

The campaign is being led by a group of Minnesota mothers of children with disabilities who are fed up with hunting for sanitary ways to change their kids. The dearth of accessible restrooms means they are often pushed to the margins of public spaces — forced to change and clean their children on floors, cars or behind trees at highway rest stops. When winter comes, many stay home because it’s too difficult to find clean, private changing stations.

These mothers have launched a Facebook group, called Changing Spaces Minnesota, that helps people with disabilities navigate the often-maddening search for accessible restrooms, and alerts them to places with adult-size changing tables. They are also reaching out to public institutions — including hospitals, libraries, parks and stadiums — to encourage them to install the tables. Fewer than two dozen buildings statewide have them, they estimate.

Their longer-term goal is to get height-adjustable, adult changing tables in every public restroom in the state. They say that would benefit a broad swath of Minnesotans with disabilities and those who are older who have difficulty using standard toilets.

“This is about human dignity,” Sarah St. Louis, an architectural project manager from Shorewood, who has an 11-year-old son, Ezra, with physical and cognitive disabilities brought on by a traumatic brain injury at 20 months old. “Tomorrow, you could experience your half-naked body being put on a dirty public restroom floor to be changed because you never thought that having a sanitary, safe, adult-sized changing table was worth it or needed.”

Their efforts have reignited a broader discussion about equal access for people with disabilities.

Julie McDonnell, a schoolteacher from Bloomington, has a 5-year-old daughter, Macy, with significant developmental delays caused by a rare chromosomal abnormality. At nearly 40 pounds, Macy is already too heavy for the ubiquitous baby changing tables in public restrooms. When they go to her older son’s soccer games or other public places, McDonnell said she has no choice but to change Macy on the floor of their wheelchair-accessible van.

As a result, McDonnell said they have to schedule social outings around Macy’s bowel movements — and often skip events with other children.

“I refuse to change my daughter’s diaper on the floor of a public restroom,” McDonnell said in written testimony in support of the proposed bill. “Clearly this is disgusting and unsanitary, but it is also an invasion of her privacy. … Macy, as well as everyone with a disability, deserves to have dignity and respect while using the restroom just as those of us without disabilities do.”

Steve Utgaard, a cafeteria worker and volunteer caregiver from Maplewood, said he stopped taking his teenage friend with cerebral palsy to parks because of the same reason. Sometimes he would have to search for hidden areas in parks — behind trees and bushes — to change his friend’s undergarments. Even then, people occasionally stop and gawk.

Once, Utgaard said that he was forced to change his friend in the utility closet of a cinema after discovering that the theater lacked a wheelchair-accessible bathroom. “My friend was humiliated and so was I,” Utgaard said. “It’s crazy in this day and age, but this is what life is like for a lot of people with disabilities.”

The proposed bill, which passed the Senate Labor Committee in March, would change the state’s building code to require adult-size changing tables in the public restrooms of all newly constructed buildings, as well as modifications to existing restrooms. The costs range from $2,000 for free-standing tables and up to $30,000 for more sophisticated, wall-mounted tables that can adjust for a person’s height.

Disability advocates maintain that the cost of adding the tables would be more than offset by increased revenue from customers with disabilities and their relatives.

Five years ago, Linda Hood of Woodbury contracted a rare illness known as Guillain-Barré syndrome that attacks the body’s immune system. The former clinical scientist and triathlon competitor, who once climbed Mount Kilimanjaro in Tanzania, became paralyzed and less able to control her bowel movements. Overnight, she discovered that most public facilities, including the hospitals she visited for medical appointments, were inaccessible.

“This one change (to add adult-size tables) will bring thousands of people out of their homes. And when businesses realize that, they’re going to wonder, ‘Where did all these people come from?’” said Hood, 64. “Right now, if you have to lay on a dirty bathroom floor to get changed, it makes you not want to go anywhere.”

On a recent afternoon, Nguyen was visibly elated after she discovered an accessible changing area in a family restroom at the Mall of America. The room had a height-adjustable table that enabled Nguyen to transfer and change Sadie without having to lift her 60-pound frame — which can be a strain on Nguyen’s back. The padded table also had a strap and a railing to keep her daughter from rolling off as she was being changed.

“This is like Christmas!” Nguyen said, after posting images of the changing table to the Changing Spaces Minnesota page on Facebook. “This opens up a whole new world for us.”

© 2023 StarTribune
Distributed by Tribune Content Agency, LLC

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