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Tag: Patients

  • POTS rose after covid. Patients face delays in diagnosis and treatment.

    POTS rose after covid. Patients face delays in diagnosis and treatment.

    Covid is causing a sharp rise in cases of postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system that causes rapid heart rate, fainting and dizziness

    February 27, 2023 at 6:00 a.m. EST

    Angelica Baez uses a motorized chair to get around a park in Sacramento on Feb. 3. Baez developed postural tachycardia syndrome, called POTS, after getting covid in 2020. She quickly becomes fatigued by walking. (Max Whittaker for The Washington Post)

    Comment

    A life-changing condition called POTS, which can cause fainting, irregular heartbeats and dizziness, particularly among young women, appears to be on the rise as a result of the coronavirus pandemic.

    But the condition isn’t well understood, and doctors dismiss many patients as having anxiety, delaying diagnosis. Once diagnosed, many patients face waiting lists as long as two years to get treatment from specialists.

    POTS stands for postural orthostatic tachycardia syndrome, a disorder of the autonomic nervous system, which regulates involuntary functions like heart rate, blood pressure and digestion.

    “When the autonomic nervous system is not functioning properly, any or all of those things can go a little haywire,” said David R. Fries, a cardiologist and POTS specialist at Rochester Regional Health.

    POTS patients typically experience a marked rise in heart rate when standing and a complex combination of symptoms, including dizziness, brain fog, fainting, headache and fatigue, among many others.

    There is no known cure for POTS, but physical therapy, medications and diet changes related to salt intake can sometimes help.

    Experts say there is a dire shortage of medical professionals who know how to care for patients with POTS. Lauren Stiles, president and chief executive of Dysautonomia International, a nonprofit advocacy group, estimates that the number of people with POTS has at least doubled since the start of the pandemic, while the number of specialists has remained the same and waiting lists are getting longer.

    “They were overwhelmed and flooded long before covid,” Stiles said “We need to increase the amount of experts in this because it wasn’t enough before covid, and it’s certainly not enough now.”

    POTS symptoms are often diagnosed as anxiety

    Symptoms can vary widely, and in some cases, can be debilitating.

    Angelica Baez, 25, of Sacramento, got sick with covid in March 2020. Soon after, she developed unusual symptoms, including tingling hands, frequent diarrhea and either feeling extremely cold or extremely hot. But the most debilitating symptom was that she almost constantly felt dizzy. She often felt like she might pass out and had trouble walking long distances.

    “My heart started going insane. I could feel it pounding in my chest,” she recalled. “I literally felt like I was going to die.”

    Just standing up or walking across the kitchen caused her heart rate to spike to 160 beats per minute, and she frequently rushed to the E.R., worried that she was having a heart attack. She tried consulting various doctors but was dismissed because nothing seemed wrong with her heart or overall health.

    “I would go to the doctor, and he just started telling me, ‘No, I think you just have anxiety,’” she said. “And I was like, you know what? I have anxiety because of what’s happening to me.”

    Baez was finally seen by a cardiologist who diagnosed POTS in early 2022.

    “I would go to the doctor, and he just started telling me, ‘No, I think you just have anxiety,’” she said. “And I was like, you know what? I have anxiety because of what’s happening to me.”

    — Angelica Baez

    Life has changed dramatically for Baez since developing POTS. She needs to use a wheelchair to go longer distances and a shower chair to bathe. She gets dizzy if she sits upright or stands for long periods of time. Before getting sick, she was painting and interviewing for a job as a medical secretary. She can no longer work and can only paint in short bursts.

    Now, Baez is taking salt tablets and fluids and wears compression garments, which are both common interventions for POTS. She hasn’t been able to find a POTS specialist in her area. She sees a cardiologist and has been trying alternative treatments like acupuncture and herbal medicine.

    A 2-year-waiting list for POTS patients

    Part of the problem in diagnosing and treating POTS patients is that many doctors aren’t familiar with it and patients often see multiple doctors before finally getting diagnosed. One study of more than 4,800 POTS patients found that most didn’t get diagnosed until a year or more after first seeing a doctor, and the average diagnostic delay was nearly five years.

    It’s still unclear how many covid patients develop POTS. Studies show that anywhere from 2 percent to 14 percent of people with covid develop POTS. One study of long covid patients found that overall 30 percent met the criteria for POTS, although it was far more common in women. In that study, 36 percent of women met criteria for POTS compared to 7 percent of men.

    Before the pandemic, Tae Chung, director of the Johns Hopkins Postural Orthostatic Tachycardia Syndrome (POTS) program, said he had an appointment wait list that was about a year long, which was on par with many other POTS clinics. Now it’s a little over two years long, he said.

    Fries, the cardiologist and POTS specialist at Rochester Regional Health, said most cardiology appointments take about 40 minutes, but because of the complexity of symptoms associated with POTS, most of his appointments with POTS patients take 60 to 80 minutes. Because his caseload of POTS patients has roughly doubled since the pandemic, leading to longer wait times, Fries has started working on Saturdays.

    After Jillian York, 17, of Spring, Tex., got covid in June 2022, she experienced stomach aches and excessive sweating, and began having trouble sleeping. She felt dizzy after standing up and like she might faint when she performed as a drum major in her marching band. Getting up from the sofa caused her to blackout for a few seconds.

    Her mother, Heather York, 49, said she initially thought the Texas heat was to blame, but it soon became apparent that something was off.

    She started taking her daughter to doctors, but felt dismissed. Doctors attributed Jillian’s symptoms to her recent weight loss, despite the fact that she remained at a healthy weight.

    Jillian said doctors made her feel “minimized.” “I just felt really lost,” she said.

    Finally, in November, her mother took her to a pediatric neurologist, who told Jillian that she had POTS.

    Jillian has struggled to find a treatment that works. She has seen numerous cardiologists and other specialists and tried alternative interventions like acupuncture. Physical therapy has offered some relief, she said.

    “The lack of answers is the most frustrating thing that I have to go through,” Jillian said. “I know that more and more people are getting it, so why is it not being talked about?”

    At least a million new patients

    While nobody knows exactly what causes POTS, symptoms commonly develop following a concussion or viral illness, said Satish Raj, a cardiac sciences professor and POTS expert at the Libin Cardiovascular Institute at the University of Calgary. Most POTS patients are women.

    “There’s an element of dismissiveness and misogyny in the room. The POTS demographic is women who, for the most part, look pretty well,” Raj said. “They complain that their heart is racing, and I think that gets dismissed as anxiety a lot.”

    POTS wasn’t widely recognized as a real condition by the medical industry until a little more than two decades ago. In the United States, the condition only received a distinct diagnostic code in October 2022. Without a diagnostic code, POTS often got lumped in with other heart conditions, which is why it’s been difficult to track the overall number of POTS patients.

    “There’s an element of dismissiveness and misogyny in the room. The POTS demographic is women who, for the most part, look pretty well,” Raj said. “They complain that their heart is racing, and I think that gets dismissed as anxiety a lot.”

    — Satish Raj

    Before covid, experts estimated there were about 1 to 3 million Americans who had POTS. And now there are at least 1 million or more new POTS patients as a result of covid, said Pam R. Taub, a cardiologist and professor of medicine at the University of California at San Diego School of Medicine, who is researching post-covid POTS for National Institutes of Health’s Recover covid initiative.

    Another barrier is that even after POTS was recognized, there historically has been little funding from organizations like the National Institutes of Health to research POTS or any potential cure. One analysis found that the NIH allocated, on average, $1.5 million dollars for POTS research funding per year between 2015 and 2020, whereas other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively.

    Potential treatments for POTS

    POTS patients often have low blood volume and difficulty with blood vessel constriction, so their blood tends to pool below their heart when they stand up. This depletes vital blood flow to the brain and can result in dizziness, brain fog, or fainting.

    Ingesting more salt and drinking more water may help people with POTS retain more fluid and increase their blood volume, experts say.

    In a small, controlled Vanderbilt University study, researchers found that a high salt diet improved but didn’t eliminate many symptoms of POTS.

    How much salt and water an individual with POTS needs can vary, but a high-salt diet may not always be appropriate for patients with cardiac complications from covid or high blood pressure, according to Svetlana Blitshteyn, an associate neurology professor at the University of Buffalo who is the director and founder of the Dysautonomia Clinic, which specializes in treating POTS patients.

    Other interventions include beta blockers or other drugs that can decrease heart rate. Medications to help the body better absorb salt and fluid, or blood vessel constriction medication, which allows the body to more easily get blood back to the heart and brain, are also used, she said.

    Physical therapy can also help many POTS patients, according to Thomas Chelimsky, neurology professor and director of the Comprehensive Autonomic Program and Autonomic Laboratory at Virginia Commonwealth University.

    Because POTS patients are sensitive to the effects of gravity, he typically has his patients start exercising from a seated or lying down position, or while in a pool.

    With treatment, Maura White, 44, of Rochester, N.Y., has significantly improved. She was diagnosed with POTS in October after getting sick for a second time with covid in April 2022. Before she got help, she was fainting about once a week and had a fluctuating heart rate.

    “I met with my general practitioner four, five or six times: each time going in crying and saying, ‘I’m not getting better, I’m not getting better.’ She would just say, ‘You’re going to get better,’” White recalled.

    It wasn’t until White went to physical therapy that she found out she might have POTS. White was finally diagnosed by a cardiologist in October and started taking beta blockers along with wearing compression stockings, eating more salt and doing physical therapy.

    She hasn’t fainted since starting the treatments. Although she used to be an avid runner, she isn’t able to stand for long stretches of time. Now she sits on a bench to shower, relies on grocery pickup so she doesn’t have to walk store aisles and rents a scooter for longer outings. She also sleeps about 12 hours a night and continues to have other symptoms like tingling hands and feet, muscle twitches, diarrhea and brain fog.

    Worsening symptoms after covid

    In some cases, covid seems to be worsening symptoms for existing POTS patients. Hanna Rutter Gully, 32, of Brooklyn developed POTS at the age of 17 after a concussion while playing soccer. She wasn’t diagnosed until six and a half years after the injury.

    Her symptoms, which included dizziness, migraines, cognitive issues and fatigue, made it difficult for her to attend college. She took an extra three semesters to graduate, finished many semesters remotely and had her sister move in with her in her final year of college to help her.

    Once she got diagnosed and got treatment, she was able to work her way up to living independently in New York and working full time as a corporate partnerships manager for Girls Who Code. Then, she got sick with covid in spring 2020 and her symptoms worsened to the point where she had to stop working.

    “You name it, and it’s gotten worse,” she said.

    Pre-covid POTS patients are having trouble getting appointments with specialists as well. Cara McGowan, 37, of Deerfield Ill., leads an Illinois support group for POTS patients. She has noticed that people have started to become more desperate for help. Some have lost their jobs as a result of their inability to get treated, she said.

    “The patient community is in crisis,” she said. “If you can’t take care of your health, everything else falls apart too.”

    Patients supporting other patients

    In many cases, patients are learning more about POTS from each other than they are from doctors, said Charlie McCone, 33 of San Francisco.

    McCone was a tennis, running and cycling enthusiast before he got sick with covid in March 2020. Then, he developed shortness of breath, chest pain, full body twitches, a rapid heart beat and fatigue, among other symptoms.

    After a second covid infection in August 2021, his symptoms worsened to the point where he had to stop working in his nonprofit marketing job. He couldn’t stand for more than five minutes or sit upright for more than 10 minutes without experiencing symptoms.

    He was not taken seriously by doctors, he said, and one doctor laughed at him when he asked whether his symptoms could be related to his coronavirus infections.

    It was only through a long covid support group that he figured out others were having the same issues. After seeing three cardiologists and two neurologists, he was finally referred to Stanford’s Autonomic Disorders Program and got diagnosed with POTS in May 2021.

    With treatment like compression socks and increased salt and fluid, he can now tolerate sitting up for 20 minutes before symptoms begin but still has trouble leaving the house.

    “It’s so frustrating that we are three years into this and long covid patients are having an incredibly difficult time getting a diagnosis and having their symptoms validated,” he said.

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  • KFF’s Kaiser Health News and CBS News Team Up to Investigate a Dental Device That Allegedly Has Left a Trail of Mangled Mouths and Devastated Patients

    KFF’s Kaiser Health News and CBS News Team Up to Investigate a Dental Device That Allegedly Has Left a Trail of Mangled Mouths and Devastated Patients

    In a months-long challenge, KFF’s Kaiser Health and fitness Information correspondent Brett Kelman joined forces with CBS News Countrywide Purchaser Investigative Correspondent Anna Werner to look into an unregulated dental system that is at the coronary heart of many accounts of suffering and disfigurement.

    At the very least 10,000 dental sufferers have been fitted with the set Anterior Growth Direction Equipment (“AGGA”), which expenses about $7,000. The gadget resembles a retainer, is usually worn for many months, and uses springs to implement force to the entrance enamel and higher palate, according to the patent application filed by the inventor of the product.

    In videos of the inventor coaching dentists, he says the force can grow a patient’s jaw, which he cites as the critical to creating folks additional stunning and curing frequent conditions like rest apnea and TMJ. But dental specialists interviewed by KHN and CBS News mentioned that based on their ordeals with former AGGA patients the machine pushed enamel out of situation and from time to time still left them free and weak.

    At minimum 20 individuals have filed lawsuits in the previous three a long time declaring the machine — which has not been reviewed by the Meals and Drug Administration — left them with flared tooth, broken gums, uncovered roots, or erosion of the bone that holds tooth in position. The inventor and other defendants have denied legal responsibility in all the lawsuits.

    The joint KHN-CBS News investigation aired on “CBS Mornings” in two installments, on March 1 and March 2. A digital version of the story, which incorporates embedded online video of the Television set segments, appears on khn.org and cbsnews.com. This is the very first investigative job stemming from a broader editorial partnership concerning CBS Information and KFF.

    “A hallmark of KHN’s investigative journalism is that we illuminate systemic flaws in American health care,” explained KHN Publisher David Rousseau, the government director of journalism and technological innovation at KFF. “This investigation demonstrates no a single was looking at.”

    “This is a excellent example of reporters teaming up to expose a trouble that can impact the wellbeing and funds of everyday People,” reported Shawna Thomas, Executive Producer of CBS Mornings. “By partnering with Kaiser Well being Information, we’re capable to grow the depth of our health treatment and customer coverage.”

    The editorial partnership also features frequent appearances by Dr. Céline Gounder, KHN’s senior fellow and editor-at-significant for community wellness, on all of CBS News’ platforms, as nicely as tales, segments, and specials drawing upon reporting from across KHN’s newsroom and bureaus. It incorporates the preferred “Bill of the Month” sequence, in which KHN Editor-in-Chief Elisabeth Rosenthal appears regularly on “CBS Mornings” to discuss stunning clinical expenses and what they inform us about the wellbeing treatment method. (“Bill of the Month” is a collaborative investigative challenge of KHN and NPR.) And it now incorporates the KHN Wellbeing Moment, a weekly aspect for CBS News Radio stations that will support hundreds of thousands of listeners recognize how  developments in health and fitness treatment delivery and coverage have an impact on them.

    For the dental device story, KHN and CBS Information journalists interviewed 11 dental patients who claimed they ended up harmed by the AGGA gadget — 8 of whom have lively lawsuits concerning the device — plus attorneys who represent or have represented at minimum 23 some others.

    In each individual case, the individuals explained they mistakenly assumed the gadget would not be for sale unless of course it was established safe and sound and effective. Dental specialists mentioned, centered on their knowledge with former AGGA sufferers, that sufferers can suffer tens of 1000’s of pounds in destruction to their mouths.

    According to a KHN and CBS Information review of the FDA’s unit database, the AGGA does not appear to be on the radar of the agency, which is accountable for regulating healthcare and dental products in the United States. A manufacturer is meant to register gadgets with the Food and drug administration, and individuals that pose even a reasonable risk to a affected individual can be needed to go by a pre-sector assessment to verify if they are harmless and successful. The maker of the AGGA stated in a courtroom document it has no history of speaking with the Fda about the system before commencing to make or offer it, and claimed that the system is exempt from premarket assessment less than an exemption for dental labs.

    About KFF and KHN

    KHN (Kaiser Health News) is a nationwide newsroom that makes in-depth journalism about health challenges. With each other with Plan Investigation, Polling and Survey Investigation and Social Effect Media, KHN is one of the four main operating programs at KFF. KFF is an endowed nonprofit firm supplying data on health troubles to the nation.

    About CBS News and Stations

    CBS Information and Stations brings collectively the ability of CBS Information, 28 owned tv stations in 17 big U.S. marketplaces, the CBS Information Streaming Network, CBS Information Streaming area platforms, community websites and cbsnews.com, below a single umbrella. CBS News and Stations is home to the nation’s #1 news application 60 MINUTES, the CBS Information Streaming Network, the initially 24/7 digital streaming news community, the award-profitable broadcasts CBS MORNINGS, CBS SATURDAY Early morning, the CBS Night Information WITH NORAH O’DONNELL, CBS SUNDAY Early morning, CBS WEEKEND Information, 48 Hours and Deal with THE Country WITH MARGARET BRENNAN. CBS News and Stations offers news and facts for the CBS Tv Network, CBSNews.com, CBS News Radio and podcasts, Paramount+, all electronic platforms, and the CBS News Streaming Community, the premier 24/7 anchored streaming information services that is readily available free of charge to everyone with entry to the web. The CBS News Streaming Network is the place for breaking news, dwell situations, initial reporting and storytelling, and systems from CBS Information and Stations’ major anchors and correspondents working regionally, nationally, and about the world. CBS News’ streaming expert services, throughout national and neighborhood, amassed just about 1 billion streams in 2022. Launched in November 2014 as CBSN, the CBS Information Streaming Community is out there on 30 digital platforms and applications, as nicely as CBSNews.com and Paramount+. The service is accessible dwell in 91 nations around the world. CBS News and Stations is devoted to delivering the maximum-excellent journalism below benchmarks it pioneered and proceeds to set in today’s electronic age. CBS News earns extra prestigious journalism awards than any other broadcast news division.

  • Worker shortages mean hospitals can’t admit mental health patients

    Worker shortages mean hospitals can’t admit mental health patients

    By Rose Hoban

    Mental health patients in need of admission to state-run psychiatric hospitals across North Carolina might spend hours, days or even weeks in an emergency department, waiting for an open bed in a facility that is better staffed and equipped for their needs.

    The state Department of Health and Human Services created a monitoring system over the past year that provides a quick report about the location of open mental health care beds available across the state.

    What it shows can be disturbing.

    DHHS found out through its new bed tracker that during the week of Feb. 20, 489 people were waiting to be admitted to a one of the state’s psychiatric facility, with 253 of them were waiting for a psychiatric hospital. 

    It wasn’t that there weren’t beds available in all cases. It often is a dire shortage of health care workers at the behavioral health facilities.

    “We actually had empty beds, but we lacked the staff, the personnel to staff them, which means that we aren’t able to admit individuals off of that waiting list at the rate that you and we would expect,” DHHS Deputy Secretary Mark Benton told lawmakers last week during an appropriations committee meeting. 

    Benton and others delivered a grim description of the staffing situation at North Carolina’s three psychiatric hospitals and 11 other state-operated facilities — alcohol and drug treatment centers or those that house people with severe intellectual and developmental disabilities or children with mental health issues.

    Vacancy, turnover rates high

    When all of those facilities are at capacity, it takes more than 11,000 people to operate them — nearly two-thirds of the state health department’s 17,400 positions.

    Luke McDonald from the legislature’s nonpartisan fiscal research division told lawmakers that right now, close to 3,700 positions are vacant — slightly more than triple the 1,230 vacancies reported in 2020.

    “We’ve seen a decrease in the number of people served, looking at last year compared to two years ago,” McDonald said. “Across all the facilities [that] adds up to over 2,400 fewer people served, so a 31 percent decrease.”

    For example, the state’s three psychiatric hospitals have a capacity of 894 beds, but they were only able to serve, on average, a total of 667 patients. The state’s three Alcohol and Drug Abuse Treatment Centers, if fully staffed, would have enough space for 146 patients every day, but they were only able to serve 80 patients per day, on average, throughout 2022.

    “The vacancy rate, as well as the turnover rate in those facilities, remains high and sadly shows no signs of improvement,” Benton told lawmakers, noting that two-thirds of the vacant positions have been unfilled for more than six months. 

    Last year, Benton and DHHS Sec. Kody Kinsley appeared before lawmakers to brief them on a workforce vacancy rate in state-operated facilities of 26.2 percent. Now, Benton said, it’s at 30.1 percent. 

    Caption: Across all facilities 2,449 fewer people were served in FY 2021-22 than were served in FY 2019-20. Credit: NCGA Fiscal Research Division

    “Our broader behavioral health system depends upon the availability of beds and services and staff all throughout the continuum of behavioral health care, whether that is in the community or within our facilities,” Benton said. 

    As lawmakers get deeper into the process of creating a state budget for the biennium that begins July 1, Benton and Kinsley are painting a stark picture of what’s needed to get the state’s mental health system back on track. Much of that, they say, is improved salaries for everyone from physicians to the people who cook the meals and keep state facilities clean.

    The fiscal forecast for North Carolina is rosier than expected. In a report released mid-February by General Assembly budget analysts and the governor’s budget staff, revenues were projected to be $3.25 billion more than expected a year ago.

    Republicans with majorities in both General Assembly chambers have talked about potential tax cuts, but there also could be a push for more spending on the state workforce.

    Supply, demand imbalances

    Staffing a bed is not as simple as hiring a nurse or two. 

    Bringing 20 beds online in a facility, DHHS estimates, would require 10 to 20 registered nurses and an additional 20 to 25 nurse aides or health care techs to cover three shifts per day, every day.

    “Then as you get into multiples of those 20 beds, into 40 and 60, then you start thinking about the need to hire an additional psychiatrist and additional psychologists and social workers who will begin working on the discharge plans for those new patients,” Benton added.

    When there are not enough workers one of two things happens: Either the bed remains empty or the state goes to the open market for temporary workers. 

    Those workers come at a steep cost. 

    “We spent $65 million last year to hire temporary nurses, temporary nurse aides and other staff,” Benton said. “We are on track to spend that amount this year, $32 million is what we have spent roughly midway through this year, so I anticipate that we will spend a similar amount when we reach the end of this state fiscal year.”

    If there’s not a person holding that job and receiving a paycheck, that money is still budgeted and getting spent, McDonald said. 

    “They’re generally used for overtime or shift premiums, that’s for the current employees who are working there, or for temporary staff, contract staff,” he said. 

    Benton said there is a range of worker turnover rates.

    In 2022, one out of every four workers left Durham’s Wright School, a facility for children ages 6 to 12 with serious emotional and behavioral disorders. That same year, Black Mountain Neuro-Medical Treatment Center saw two-thirds of its workers quit. Black Mountain is a nursing home-like facility for people who have complex medical and behavioral needs that require 24-hour monitoring. 

    North Carolina’s 14 state operated mental health facilities require more than 11,000 full time employees to make them function, requiring more than $1.1 billion to operate. But this year, there are almost 3,700 employee vacancies. Credit: NCGA Fiscal Research Division

    The burnout that drives the vacancies has been exacerbated by the burnout many health care workers experienced during the coronavirus pandemic. Additionally, workers can command higher salaries and get them elsewhere.

    Benton gave one example that legislators heard about while visiting a Greenville facility.

    “The director there was sharing that for a nurse that he was about to hire, [he] was close to bringing that individual on board, but they got a competing offer that was $50,000 more than what he was able to pay,” Benton told lawmakers. “I don’t think his request was that I need to be able to match that dollar for dollar. I just need to be in the ballpark to be more competitive.”

    Benton said the department just doesn’t have the money to consistently hire when others are willing to hire for tens of thousands more dollars.

  • LGBTQ+ Patients Have Higher Risk of Breast Cancer Recurrence

    LGBTQ+ Patients Have Higher Risk of Breast Cancer Recurrence

    LGBTQ+ clients with breast cancer encounter delays in analysis and have worse results than cisgender heterosexual individuals, according to investigate released in JAMA Oncology.

    Scientists located that LGBTQ+ sufferers have a better threat of cancer recurrence, and they are additional very likely to decrease their oncologist’s advisable study course of remedy.

    This retrospective, situation-regulate study provided 92 LGBTQ+ clients and 92 matched cisgender heterosexual clients. All individuals were being identified with breast cancer in a single health and fitness care technique involving January 2008 and January 2022.

    Go on Examining

    The demographic traits of the cohorts had been equivalent, besides for race and ethnicity. The LGBTQ+ team had extra non-Hispanic White clients (78.3{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} vs 63.{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) and Hispanic sufferers (14.1{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} vs 7.6{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) but much less Asian or Pacific Islander sufferers (3.3{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} vs 25.{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) than the cisgender heterosexual group.

    In equally teams, the median age at analysis was 49 many years, and most sufferers experienced personal coverage. Baseline illness qualities have been very similar amongst the groups.

    Between the LGBTQ+ clients, 74 (80.4{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) ended up cisgender lesbians, 12 (13{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) had been cisgender bisexuals, 4 (4.3{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) were heterosexual transgender males, 1 (1.1{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) was a gay transgender guy, and 1 (1.1{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}) was an asexual transgender person. 

    The median time from symptom onset to diagnosis was lengthier for LGBTQ+ patients than for cisgender heterosexual individuals — 64 days and 34 times, respectively (modified hazard ratio [aHR], .65 95{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} CI, .42-.99 P =.04). 

    Nevertheless, the time from analysis to procedure was identical involving the groups. In addition, there had been no differences in prices of mastectomy, chest reconstruction, adjuvant radiation, neoadjuvant chemotherapy, antiestrogen treatment, or HER2-qualified remedy amongst the groups. 

    LGBTQ+ people ended up far more probable than cisgender heterosexual individuals to decline oncologist-suggested therapy — 38{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} and 20{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, respectively (altered odds ratio, 2.27 95{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} CI, 1.09-4.74 P =.03). The use of alternate medicine was bigger in LGBTQ+ sufferers than in cisgender heterosexual sufferers as perfectly — 46{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} and 30{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, respectively.

    The charge of recurrence was greater in LGBTQ+ individuals than in cisgender heterosexual individuals — 32.2{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} and 13.3{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, respectively. Area recurrence costs ended up 17.3{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} and 2.5{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, respectively. Fees of metastatic recurrence were being 24.7{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} and 13.6{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c}, respectively.

    In a multivariable analysis, the chance of recurrence was 3-fold larger for LGBTQ+ clients (aHR, 3.07 95{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} CI, 1.56-6.03 P =.001).

    The scientists suggested that these disparities be further more investigated in potential, populace-dependent scientific studies, with the intention of informing wellness treatment interventions and bettering quality of treatment for LGBTQ+ people with breast cancer.

    Reference

    Eckhert E, Lansinger O, Ritter V, et al. Breast cancer diagnosis, therapy, and results of individuals from sexual intercourse and gender minority teams. JAMA Oncol. Published on-line February 2, 2023. doi:10.1001/jamaoncol.2022.7146

  • Some providers ignore psych patients’ directives

    Some providers ignore psych patients’ directives

    EDITOR’S NOTE: Due to stigma attached to mental illness and psychiatric hospitalization, this article assigns the pseudonyms Sue and Michael to a mother and son in Charlotte. NC Health News verified their identities and reviewed legal and medical records relevant to this story. 

    If you need mental health support, call or text 988 or consult this resources page. 

    By Taylor Knopf

    In late summer 2021, Sue came home from work to find her 24-year-old son Michael confused. He shrugged in response to most questions and muttered words that didn’t make much sense. Sue knew something was wrong because this wasn’t the first time this had happened.

    Michael was involved in the Eagle program at Atrium Health, an outpatient project designed to support young people in Charlotte after an initial psychotic episode. Sue called the Eagle program nurse, and they suggested that Michael go to the hospital before his symptoms got worse. 

    Sue and Michael were nervous because Michael had suffered adverse reactions to some psychiatric medications in the past. But this time, they had one source of reassurance as they headed to the hospital: a psychiatric advance directive. That’s a legal tool allowing someone with mental illness to instruct medical providers about what kind of treatment and medications they prefer — and which ones they do not — in the event of a mental health crisis.

    “They can serve as a way to protect a person’s autonomy and ability to self-direct care. They are similar to living wills and other medical advance planning documents used in palliative care,” says a guide on the federal Substance Abuse and Mental Health Services Administration website.

    Sue and Michael had a copy of this legal document in hand as they walked into Atrium hospital that day. It was also on file in Michael’s medical records, which North Carolina Health News reviewed with his mother’s permission. 

    Michael’s psychiatric advance directive listed five medications that he did not consent to, and the document explains that they’ve made him aggressive and paranoid in the past. But after Sue left the hospital for the night, Michael was given one of those five medications.

    “The advance directive clearly had medicine that he was allergic to listed on there, and they just disregarded it,” Sue said. “So once they did that, he spiraled downward quick.” 

    Psychiatric advance directives have been around for several decades, but researchers have found them to be underused. Too few patients and medical providers in North Carolina and across the country are aware of the legal tool and how it works. This leads to frustration for people like Sue and Michael who complete the legal document only to have it disregarded by doctors. 

    Avoiding involuntary commitment

    Advocates encourage people with a mental illness to set up a psychiatric advance directive as a way to have their preferences taken into account during a potential mental health crisis, which may help avoid  involuntary commitment.

    Patients are often upset — and traumatized — when they end up involuntarily committed after they voluntarily go to the emergency room during a mental health crisis. Patients under an involuntary commitment are usually transported in handcuffs by law enforcement to a psychiatric hospital. 

    Involuntary commitment is a legal process that is supposed to be a last resort when a person is determined to be an immediate danger to themselves or others. But too often, it has become the standard of care. Involuntary commitment petitions have increased at least 97 percent in North Carolina over the past decade as hospital emergency departments regularly use the legal tool to handle the droves of patients in need of psychiatric care, as NC Health News previously reported. 

    The psychiatric advance directive template, which is available on the NC Secretary of State’s website, includes a section to consent to treatment, including inpatient hospitalization, and gives patients a place to indicate which facility they would prefer. In theory, having this document would make involuntary commitment unnecessary. But there’s a caveat: “Your instructions may be overridden if you are being held in accordance with civil commitment law,” the advance directive template reads.

    In effect, once hospital staff decide to involuntarily commit a patient, that overrides an psychiatric advance directive.

    Legal advocates, medical professionals and patients have told NC Health News that even with a psychiatric advance directive in place, involuntary commitments still happen — and patients’ wishes are not always honored. 

    Duke University professor and psychiatrist Marvin Swartz has done significant research on the implementation of psychiatric advance directives. He told NC Health News that there is a lot of ignorance among health providers about how they work and that medical professionals “reflexively go to involuntary commitment.”

    “It’s hard work turning the ship, because everybody’s just used to involuntary commitment. And it’s also used as a form of transportation,” he said, referring to how once a patient has been involuntarily committed, law enforcement is mandated to transport the patient.

    He also said a “formidable” barrier is the way medical providers worry about the risk of a malpractice lawsuit when making their decisions.

    “Everybody worries about risk,” he said, “not necessarily about patient-centeredness or how to preserve the autonomy of a patient.” 

    More education needed

    Though psychiatric advance directives could be a powerful tool for people with mental illness, they are not widely used. Researchers and advocates say there needs to be more education for patients and for providers. 

    “Unfortunately, a large gap remains between the abstract promise of [psychiatric advance directives] and their implementation; few patients complete [the directives], and most mental health professionals are unaware of them,” Swartz and fellow researchers wrote in a 2020 paper published in the journal Psychiatric Services.

    Several barriers exist, including the difficulty of completing the legal forms without assistance, an inadequate infrastructure for retrieving the information in a patient’s advance directive, “clinician burden and skepticism, and health systems’ reticence to implement them,” Swartz and his colleagues wrote. 

    The legal document can be tricky to understand and fill out, particularly for patients with more severe and persistent mental illnesses. There have been recent efforts in North Carolina to train more advocates and peer support specialists who can help others create an advance directive. 

    The North Carolina chapter of the National Alliance on Mental Illness holds regular virtual training sessions for anyone interested in learning more about psychiatric advance directives and how to fill out the form. The National Resource Center on Psychiatric Advance Directives is also a useful resource with state by state information.

    Ashish George, public policy director at NAMI North Carolina, has led many of the free virtual trainings and given presentations on psychiatric advance directives for hospitals around the state. He said he reminds people that “filling out a psychiatric advance directive is not a guarantee of anything, it just increases the odds that you’ll preserve some freedom at a time when you’ll be unfree because you’ll be deemed to be medically and legally incapable” of making independent decisions.

    George highly recommends filling out the second part of the psychiatric advance directive, which designates a health care power of attorney to advocate for the patient and ensure that the advance directive is followed.

    “Make sure your health care agent is an assertive person,” George added.

    Enforcement lacking

    When a health provider doesn’t follow a psychiatric advance directive, as in Michael’s case, patients feel as though their hands are tied. They also tend to lose trust in the medical system.

    Swartz said compliance with these advance directives is a “condition for participation” to receive insurance reimbursement from the federal Centers for Medicare and Medicaid Services. 

    “Thus far, lapses in compliance are typically complaint-driven, and systematic enforcement is infrequent,” Swartz and his colleagues wrote. “Many advocates hoped that potential sanctions for noncompliance would be an effective lever for health system compliance.”

  • It’s ‘Telehealth vs. No Care’: Doctors Say Congress Risks Leaving Patients Vulnerable

    It’s ‘Telehealth vs. No Care’: Doctors Say Congress Risks Leaving Patients Vulnerable

    When the covid-19 pandemic hit, Dr. Corey Siegel was a lot more organized than most of his friends.

    50 percent of Siegel’s patients — numerous with private insurance plan and Medicaid — had been by now utilizing telehealth, logging onto appointments by means of telephones or desktops. “You get to meet up with their family associates you get to satisfy their pets,” Siegel stated. “You see more into their lives than you do when they appear to you.”

    Siegel’s Medicare individuals weren’t covered for telehealth visits till the pandemic drove Congress and regulators to briefly shell out for remote medical cure just as they would in-particular person care.

    Siegel, section main for gastroenterology and hepatology at Dartmouth-Hitchcock Clinical Middle, is certified in 3 states and lots of of his Medicare patients have been usually driving two to 3 several hours round excursion for appointments, “which isn’t a modest feat,” he stated.

    The $1.7 trillion paying package deal Congress handed in December included a two-12 months extension of vital telehealth provisions, such as coverage for Medicare beneficiaries to have mobile phone or video healthcare appointments at dwelling. But it also signaled political reluctance to make the payment improvements long lasting, requiring federal regulators to analyze how Medicare enrollees use telehealth.

    The federal extension “basically just kicked the can down the highway for two years,” claimed Julia Harris, associate director for the health and fitness application at the D.C.-centered Bipartisan Plan Center think tank. At difficulty are thoughts about the value and price of telehealth, who will reward from its use, and no matter whether audio and movie appointments should really continue to be reimbursed at the similar level as face-to-experience treatment.

    Ahead of the pandemic, Medicare paid out for only slender takes advantage of of remote drugs, these as unexpected emergency stroke care delivered at hospitals. Medicare also included telehealth for patients in rural regions but not in their properties — individuals have been demanded to travel to a designated internet site this sort of as a clinic or doctor’s workplace.

    But the pandemic introduced a “seismic improve in perception” and telehealth “became a household term,” claimed Kyle Zebley, senior vice president of community coverage at the American Telemedicine Affiliation.

    The omnibus bill’s provisions incorporate: spending for audio-only and dwelling treatment letting for a variety of doctors and many others, this sort of as occupational therapists, to use telehealth delaying in-person necessities for mental well being clients and continuing present telehealth services for federally skilled health and fitness clinics and rural wellness clinics.

    Telehealth use between Medicare beneficiaries grew from fewer than 1{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} right before the pandemic to extra than 32{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} in April 2020. By July 2021, the use of remote appointments retreated fairly, settling at 13{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} to 17{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of promises submitted, according to a cost-for-assistance claims assessment by McKinsey & Co.

    Fears more than potential fraud and the expense of growing telehealth have manufactured politicians hesitant, said Josh LaRosa, vice president at the Wynne Wellness Team, which focuses on payment and treatment delivery reform. The report required in the omnibus package “is seriously going to enable to provide far more clarity,” LaRosa mentioned.

    In a 2021 report, the Governing administration Accountability Workplace warned that making use of telehealth could maximize expending in Medicare and Medicaid, and historically the Congressional Spending plan Place of work has said telehealth could make it less difficult for folks to use much more health care, which would guide to a lot more investing.

    A photo shows Dr. Corey Siegel using a laptop.
    Dr. Corey Siegel and his colleagues at Dartmouth-Hitchcock Medical Heart see remote treatment as a tool for helping chronically ill sufferers get ongoing treatment and preventing costly unexpected emergency episodes. It “allows patients to not be burdened by their health problems,” he states. “It’s vital that we hold this going.”(Jessica Salwen-Deremer)

    Advocates like Zebley counter that distant care doesn’t automatically price tag extra. “If the precedence is preventative care and growing entry, that ought to be taken into account when taking into consideration fees,” Zebley mentioned, conveying that elevated use of preventative care could push down additional expensive shelling out.

    Siegel and his colleagues at Dartmouth see distant treatment as a device for supporting chronically sick people obtain ongoing care and preventing highly-priced unexpected emergency episodes. It “allows patients to not be burdened by their diseases,” he said. “It’s crucial that we preserve this likely.”

    Some of Seigel’s perform is funded by The Leona M. and Harry B. Helmsley Charitable Belief. (The Helmsley Charitable Believe in also contributes to KHN.)

    For the earlier nine months, Dartmouth Health’s telehealth visits plateaued at a lot more than 500 for each day. That is 10{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} to 15{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of all outpatient visits, stated Katelyn Darling, director of functions for Dartmouth’s virtual care center.

    “Patients like it and they want to continue on executing it,” Darling claimed, adding that doctors — primarily psychologists — like telehealth far too. If Congress decides not to continue on funding for distant at-home visits right after 2024, Darling said, she fears clients will have to generate yet again for appointments that could have been dealt with remotely.

    The exact fears are worrying leaders at Sanford Health and fitness, which gives companies throughout the Higher Midwest.

    “We certainly require individuals provisions to come to be long term,” claimed Brad Schipper, president of digital care at Sanford, which has well being strategy members, hospitals, clinics, and other facilities in the Dakotas, Iowa, and Minnesota. In addition to the provisions, Sanford is intently watching whether or not doctors will keep on to get compensated for supplying treatment throughout point out lines.

    All through the pandemic, licensing prerequisites in states had been frequently calm to enable physicians to practice in other states and quite a few of all those specifications are set to expire at the stop of the public well being unexpected emergency.

    Licensing prerequisites have been not tackled in the omnibus, and to guarantee telehealth obtain, states need to allow medical professionals to handle individuals throughout state strains, claimed Dr. Jeremy Cauwels, Sanford Health’s chief medical doctor. This has been specifically significant in offering psychological well being treatment, he mentioned virtual visits now account for about 20{fe463f59fb70c5c01486843be1d66c13e664ed3ae921464fa884afebcc0ffe6c} of Sanford’s appointments.

    Sanford is centered in Sioux Falls, South Dakota, and Cauwels recalled a single circumstance in which a affected individual lived four several hours from the closest boy or girl-adolescent psychiatrist and was “on the improper aspect of the border.” Due to the fact of the present-day licensing waivers, Cauwels claimed, the patient’s wait around for an appointment was reduce from a number of months to six days.

    “We were being equipped to get that kid noticed without the need of Mother taking a working day off to generate again and forth, devoid of a six-week hold off, and we were being capable to do all the factors practically for that family,” Cauwels mentioned.

    Psychiatrist Dr. Sara Gibson has made use of telehealth for many years in rural Apache County, Arizona. “There are some individuals who have no accessibility to treatment with no telehealth,” she mentioned. “That has to be included into the equation.”

    Gibson, who is also healthcare director for Very little Colorado Behavioral Health and fitness Centers in Arizona, claimed just one key question for policymakers as they appear in advance is not no matter whether telehealth is greater than deal with-to-encounter. It’s “telehealth vs. no treatment,” she said.

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