The Veriblog

Voices of Concern: Patient Perspectives

To provide these insights, Verilogue has engaged in voice-enabled pulse surveys with patients suffering from a variety of chronic conditions, and have analyzed 72 responses collected between April 30 – May 4, 2020.

Over the past few weeks, Verilogue has been chronicling the impact of COVID-19 across the care continuum, with a focus on the perspectives of community and ER physicians to date.  In addition to the healthcare provider perspective, we believe it is important to listen to the voices and concerns from another critical population: patients who suffer from chronic conditions. 

To explore the patient experience during the pandemic, Verilogue raised the following question to individuals with Multiple Sclerosis, Psoriasis, Rheumatoid Arthritis, and Type 2 Diabetes.

“We are interested in understanding how the COVID-19 pandemic is affecting patients who suffer from chronic conditions.  As a patient with [CONDITION], how has the pandemic affected you and your life with [CONDITION]?”

Every patient who suffers from chronic disease is unique and the individuals participating in the research share a range of personal experiences during this historic time.  Additionally, patients view the experience of the pandemic through their own unique lens.  Some report that the pandemic is impacting their lives significantly, while others portray a minimal effect on their day to day life.

Despite having a range of perspectives and experiences, all of these patients are living through a unique time that affects us all.  We are sharing these stories through the voices of these patients themselves.

MULTIPLE SCLEROSIS (MS)

Attentive monitoring, adherence to treatment, and physical activity are critical for the successful management of MS. Many patients report that social distancing due to the COVID-19 pandemic is having a negative impact on their ability to carry out these tactics.  Additionally, fear of contracting COVID-19 due to their immunosuppressed state, combined with stress and frustration from isolation/social distancing, is resulting in disease worsening and anxiety.

“…overly stressful which has probably likely aided in the flare, um, and I guess exacerbated all of those things… I haven’t been able to, um, get some of the medications that I’ve needed in order to maintain the stability of my illness.” – MS Patient

“I am climbing up the walls. I am tired of being incarcerated just because I’m alive. I’m not handling this well emotionally at all. And I just can’t deal with this well.” – MS Patient

Neurologist visits are being cancelled, and many MS patients do not consider telemedicine to be an equal alternative to a physical examination:

“…[Doctors] really aren’t much of a help to me because they can’t, uh, see me in person or give me the physical, um, examination they usually give me when I go in their office. So, I really think that teleconferencing doesn’t work real well for multiple sclerosis, um, patients.” – MS Patient

To illustrate the shift in perception among those less impacted by COVID-19,some report that they are successfully doing their physical therapy from the house/via telemedicine, instead of the doctor’s office. 

It has not affected me thus far… I haven’t had to see my neurologist… I do my physical therapy at home [INAUDIBLE] has closed because I’m doing my physical therapy at home now on the, uh, [INAUDIBLE] Facetime. – MS Patient

PSORIASIS

While fewer Psoriasis patients reported a high impact from COVID-19, compared to other conditions, many report that continued stay-at-home and social distancing measures are causing added stress, which results in an increase in symptoms.  Some patients also perceive themselves as being a burden on the other members of the household, due to the extra precautions required when living with an immunocompromised family member:

“It has impacted me by creating a lot of fear about, um, uh, uh, about getting coronavirus, contracting coronavirus, um, since the risks are much higher in people who have underlying conditions and the medication that I take is, is taken to suppress my immune system.” – Psoriasis Patient

“It has given me extra anxiety and stress, which for sure has triggered, uh, even more symptoms” – Psoriasis Patient

Some patients are also reporting challenges with receiving their injectable treatments, which they typically receive in the exam room:

“I have not been able to get in to get my normal treatments. My shots are not available to me. So, it has been an adverse effect on my life and the way I feel about myself.” – Psoriasis Patient

Ultimately, however, many psoriasis patients report that they still have access to their HCPs, medications, and monitoring/testing; these patients report a lower level of impact while continuing to social distance at home, despite the recognition of their at-risk nature:

“…my dermatologist also has televisits, telemedicine visits available. I don’t feel like I’ve needed that thus far. But it’s reassuring to know that that is available should I need it.” – Psoriasis Patient

“…I am more prone to stay away from everybody and adhere strictly to the stay at home order, uh, since my immune system is suppressed, um, and I have underlying health conditions.”  – Psoriasis Patient

RHEUMATOID ARTHRITIS (RA)

A majority of RA patients believe the added stress associated with COVID-19 is contributing to their disease worsening. While most want to discuss their condition with their doctor, they are very concerned about traveling to the exam room due to the perceived infection risk.

Recently my condition has gotten worse and I would like to talk my doctor even if I could get into my primary. Um, but it’s been getting worse in my knees and I’d like to talk to her about that. But I’ve been waiting for the pandemic to end. Um, I’ve been picking up my prescription at the Walgreens but now they’ve extended the orders in my state to wear a mask and I haven’t been out yet since then. So I’m a little bit nervous about going to the pharmacy next time… I try to just deal with the pain and, um, just hope my condition doesn’t deteriorate, my joints don’t deteriorate before I can, um, be reevaluated.”RA Patient

“Uh, I would say it’s made me more anxious because of the medicine that I’m on, I have a compromised immune system. So, I am strictly sheltering in place. Um, that’s pretty much the biggest effect at this point and anxious about when I might have to go back to see a doctor. I’m not sure I want to go into a doctor’s office at this point– RA Patient

One patient states that they requested hydroxychloroquine for management of their RA, which provided some peace of mind due to the potential efficacy in treating COVID-19.

“…actually after I changed to the hydroxychloroquine, whether it was false hope or not, then it gave me some, some piece of mind to not be so afraid.” – RA Patient

Another patient mentions switching their pain medication from Celebrex to Tylenol, which was approved by their physician:

I take Celebrex and methotrexate and I’ve read that Celebrex is bad and makes coronavirus worse if you get it so I have not been taking it as much as I need to therefore I am in a little more pain than normal because Celebrex is the pain reliever for arthritis.” – RA Patient

Several patients find some  comfort in their ability to consult with their doctor via telemedicine.  This allows them to maintain a satisfactory level of care without the risk of traveling to the office.

…I’ve been using teledoc to get my prescription filled. Uh, and, uh, I, I really wish this was over. But, um, and so far I’m doing pretty okay. – RA Patient”

TYPE 2 DIABETES (T2D)

Many type II diabetes patients are concerned about the lack of ability to monitor A1c outside of the exam room, and do not perceive telemedicine to be an equivalent option.

“With an endocrinologist, phone only really doesn’t help. Yeah, you can go over your numbers, but it’s really hard to do anything else. You need to have your A1c checked, which has to be done in person… My diabetes has become somewhat unmanageable with my, all my levels have gone soaring up and I don’t know why. And I can’t see my endocrinologist and do anything about it. So, you know, I’m living with a heightened danger situation just because I can’t see my doctor. So it’s been frustrating and borderline scary.” – T2D Patient

“I haven’t been able to go to my appointment, only by teleconference, which is not the same. My medicines have been late being, um, refilled or they’ve been out of stock. Um, my numbers seem to be up and down on the blood glucose.” – T2D Patient

Type II diabetes patients also report difficulty in following a proper diet and maintaining an exercise regimen due to lack of availability and social distancing measures.  This further contributes to fears of their condition worsening. Several also report that COVID-19 has affected their ability to work and impacted their ability to pay for medications.

 “Yes it has made me that I cannot go to my appointments because the doctors don’t see me if it’s not an emergency. And, uh, even then I would, I’m asked to go to the emergency room, which I was not interested in going. Um, I’m not working, so I don’t have any income to pay for my deductible to get my, uh, uh, insulin. So I’m actually using less insulin than I’m supposed to be. And, uh, and also my diet has changed, and my exercise schedule has changed because of this COVID.” – T2D Patient

Illustrating the shift in perception among those less impacted by COVID-19, several T2D patients believe that as long as they are taking all the ‘necessary precautions’ including proper diet, following public health guidelines, and stockpiling extra medication, their condition will not be negatively impacted by COVID-19. 

“I actually am not feeling affected in any way. I’m not overly concerned about getting the virus. And, uh, although I’m taking proper precautions like wearing a mask and avoiding, uh, uh, anything but social distancing, uh, I’m not really affected.” – T2D Patient

SUMMARY

Across conditions, patients consistently state that COVID-19 is negatively impacting the management of their disease, resulting in disease worsening due to a combination of mental and physical factors.  Patients view these concerns through their own unique lens, with one type of outcome potentially being acceptable for one patient, and not acceptable for another.  So what does the future hold for these patients?

Understanding the voice of the patient will be particularly critical in this era of remote monitoring.  Ultimately, patients will need to take greater ownership of the personal management of their condition, paying close attention to all factors within their control.  This includes strict adherence to treatment regimens and diligent self-monitoring, appropriate diet, regular exercise, and compliance with public health guidelines.  Knowing that many healthcare provider interactions will ultimately take place via telemedicine, it is especially important that treatment information be relayed in a clear and digestible manner, ensuring that the patient is adequately prepared to champion their health in this ‘next normal’.

Best of health,
-Verilogue

The insights presented in this content piece were developed through a collaborative effort across Verilogue’s research team

(PODCAST) Staying the Course: Impact of COVID-19 on Rx Decisions

In this Sound Insight Podcast, we invite you to listen to Jim Hickey (Vice President, Client Services) and Jeff Troy (Group Director, Client Services) describe the continued tightrope that physicians navigate in this pandemic, weighing the preference to ‘stay the course’ on existing treatments due to lack of routine monitoring and testing, against concerns about patients’ conditions worsening during this period and the associated long-term impact on patient health.

At Verilogue we are curious about the impact COVID-19 is having on healthcare and communication among patients and providers.  One of our biggest questions revolves around the impact of COVID-19 on treatment decision-making. Specific objectives of interest include:

  • Where and how are physicians from select specialties seeing their patients?
  • How, if at all, is the COVID-19 pandemic impacting decisions to initiate or change treatment?
  • How, if at all, are current treatments impacted by the COVID-19 pandemic? What effect, if any, is there on biologics or immunotherapies?
  • What impact is COVID-19 having on patient monitoring and testing? How, if at all, is this affecting treatment decision-making?

To address these questions, Verilogue examined a blend of in-office dialogue recordings and self-reflections recorded using automated voice response survey. This podcast describes the continued tightrope that physicians navigate in this pandemic, weighing the preference to ‘stay the course’ on existing treatments due to lack of routine monitoring and testing, against concerns about patients’ conditions worsening during this period and the associated long-term impact on patient health.

Best of health,

Verilogue

The insights presented in this content piece were developed through a collaborative effort across Verilogue’s research team

Voices of Concern: Perspectives from the ER

To provide these insights, Verilogue has engaged in voice-enabled pulse surveys with ER Physicians, and have analyzed 63 responses collected in April 2020

As of April, two distinct stories are emerging from ER physicians on the front lines of the COVID-19 pandemic.  These stories are shaped by location: those who are currently in the midst of a war-like chaos in a COVID-19 ‘hot spot’ (e.g. New York City), and those who are dealing with a sense of impending doom while preparing for a future peak. 

We present these stories through the voices of the physician themselves:

 

PEAK OF CONCERN

 

ER Physicians currently managing the height of their local outbreaks are ‘drowning’ from the extreme physical and emotional burden.

“This is like being in a war zone with a constant barrage of incoming casualties. No end in sight. No idea what resources you’ll have for the next hour or day or week or month. It is overwhelming. Stressful. Causing a major burnout as well as fear for the, uh, the people on the front line for their, for their own lives. Uh, lots of people have written wills and said goodbye to their family and never expecting to see them again. It’s absolutely devastating”

Every single thing that comes in through the door in my emergency department is COVID. Um, people are de-sating in front of me faster than I can put them on oxygen. It’s, it’s, uh, it’s a mess

These physicians are driven by their duty to treat the sick, though they are fearful of their ability to protect themselves, due to a lack of available resources (esp. PPE):

“Intubating patients with Covid-19 had been the first time in many years that I’ve actually been frightened during my practice of emergency medicine”

“It has been challenging, as we do not have enough PPE for our staff. We are having to use homemade PPE and rely on friends and family to help us. We desperately need more PPE”

Despite doing their best to treat the patient physically, from an emotional support standpoint, they are at a loss.  They recognize their inability to provide the patient with ‘a good death’ as families are not allowed to be with loved ones during their final moments.

“It’s very disheartening and frustrating. Um, you feel kind of helpless. Patient after patient comes in in respiratory distress. You intubate them and they code. There’s no family around and the pattern repeats. Another one comes in, gets intubated and then codes. All the while you hear code ninety nine over the head for the different floors, for other patients.”

“Patients are frustrated just as well as healthcare providers are. We are uncertain of what the future will look like. One of the hardest things has also been not allowing patients to have family members at their bedside or visit them sometimes even in times of death.”

Despite the experience of treating COVID-19 patients for several weeks, a prominent sense of uncertainty and frustration still looms among these physicians, due to lack of modern precedent and constant changes in disease understanding:

“It has been chaotic. Um, policies and protocols are changing every day. Every day we have a team meeting to go over what new protocols there are”

“This is unparalleled in my medical career. I have never seen anything like this before”

 

APPROACHING CONCERN:

 

Though physicians located outside of current COVID-19 hotspots do not currently suffer from the same physical burdens as those dealing with the height of the epidemic, they experience unique emotional burdens.  Despite media reports detailing the experiences of others across the country and world, these physicians recognize the many unknowns associated with this disease, leading them to question their own level of preparedness.

“We are seeing a few COVID patients right now, but anticipate that that will rapidly expand, period. Everyone is stressed due to the sense of impending disaster and lack of resources.”

“This disease is consuming everybody’s life, and their livelihood. I have been anxious, stressed out every day, and it’s very, um, sombering because I don’t know what the future holds.”

“I don’t know if we’ll be prepared fully when it does hit, if it does”

Notwithstanding this uncertainty, they have prepared to the greatest extent possible (expanding hospital beds; sourcing supplies), taking advantage of the current low hospital census and mostly-empty ER (due to the focus on treating true medical emergencies) as much as possible.

“Our hospital census is down by half, uh, elective surgeries are cancelled. Elective procedures are cancelled. Uh, some of our staff has taken furloughs. Some of our staff is being re-purposed. So, it hasn’t hit us very hard yet. Uh, we are preparing for a large surge. So, we’re taking this time now that we have a low census to prepare our staff, um, clear out areas that, um, normally wouldn’t be, uh, inpatient beds to be used as inpatient beds. Getting all of our equipment as much as we can. Our PPE and preparing to make, um, our hospital that normally has over eight hundred beds, into twelve hundred beds. We don’t know if we’ll use all that, but we are preparing for this surge”

“For right now, um, a lot of us are sitting around honestly twiddling our thumbs… We’re all ready, we’re all waiting”

“Right now I feel like we’re like in the eye of the hurricane and we are going to have a massive surge coming”

 

WHAT IS NEXT?

 

Despite the increasing clarity around the short term disease projections, long term uncertainty prominates across both ER Physician groups.  In the words of one physician currently working in a COVID-19 hotspot:

“It’s been a whirlwind, but I don’t think the chaos is done just yet”

 

Best of health,

Verilogue

 

The insights presented in this content piece were developed through a collaborative effort across Verilogue’s research team

Voices of Concern

With the spread of COVID-19, community physicians suddenly find themselves on a tightrope balancing patient, community and business health

COVID-19 Methodology: Verilogue has analyzed 89 in-office visits from December 2019 to March 2020.  In addition, Verilogue has engaged in voice-enabled pulse surveys with physicians across all specialties, and have analyzed over 103 responses collected in March 2020. Verilogue’s analysis of caregiver voice online was conducted on data recorded February 17, 2020 through April 2, 2020 across all websites sourced by NetBase. Quotes provided in this content all originate from Twitter or in-office visits for illustrative purposes of the text and represent broader trends found in various communities.

It is safe to say that we are all concerned about the spread of COVID-19. As COVID-19 spreads across the globe and infection rates increase, so too does concern spread and rise: concern for the health and safety of our loved ones and ourselves, distress over our own role in the spread of COVID-19, and worry for the future of the economy and the financial impact of this crisis in our lives.

Now, more than ever, data and knowledge sharing is critical in this era of uncertainty. Verilogue collects naturally occurring in-office HCP-PT dialogues, including telemedicine visits.  Additionally, Verilogue regularly collects qualitative surveys and feedback on dialogue from both PTs and HCPs.  Our methodologies provide a unique perspective around community physician, patient, and caregiver point of view.

Community Physician Voices of Concern

COVID-19 has had a profound impact on our community physicians. Community physicians suddenly find themselves on a tightrope balancing patient, community and business health. In addition to managing specific patient needs, they are filling multiple roles: small business owner; trusted community resource; public health educator; tech expert (telemedicine) – all while managing their own physical and mental well-being.  Because the goal is always to provide the best care to the patient, community physicians are assessing day-by-day whether the benefit of in-office consultation outweighs the potential risks (e.g. infection, concerns about quality of care via telemedicine) with many of our physicians reporting patient volumes (and revenues) half the level of the weeks prior to the pandemic outbreak; some far greater. Amid these challenges, community physicians are struggling to keep their practices in business for their patients, their staff and themselves; several have communicated that their practice has been shut down just two weeks into the pandemic with an undeniable uncertainty about the future.

Heightened Urgency

Taking a look back at recent exam room discussion, the conversation has evolved extremely quickly as it pertains to COVID-19.  Back in January, most questions were raised more as a curiosity, and were met with light-hearted responses (e.g. patients asking if the doctor has seen any patients with COVID-19; physicians saying that travel plans don’t need to be cancelled).  This is in sharp contrast to the conversations collected in March, in which these physicians are now diligently educating patients on best practices, and with patients asking specific questions around tactics, going so far as to warn patients with pre-existing conditions that contracting the virus could be deadly (and using more forceful language at times).  With this increased awareness comes the recognition that non-critical office visits should be rescheduled for the time being.

Patient and Caregiver Voices of Concern

The increased level of concern is echoed by patients, as one mentioned during an in-office visit in March:  “I mean, if I knew you were going to have so many people in your waiting room, I would’ve cancelled.  It really scares me.  Oh, I don’t want to go anywhere because I am so susceptible.”

Verilogue also captures the caregiver voice of concern through targeted social media monitoring.  An emergent theme unique to COVID-19 is the direct and intentional online engagement of friends and family members (caregivers) with loved ones who may be more at risk or vulnerable.  Fear for the safety and wellness of loved ones repeats itself online:

I’m very worried about my mother
“Terrified for my kiddo”
“My wife is a nurse…I feel your worries”

Caregiver and patient voices online reinforce the need for social distancing as a critical protective measure to those with underlying conditions or in an at-risk group, presenting social distancing both as a community need, and as a citizen obligation.  What this online trend shows us is that while COVID-19 has had deep impacts across the board, it also has unveiled to us individually the most vulnerable in our lives, and in evaluating our loved ones’ vulnerabilities we’ve been lead to ask—what is necessary? Caregiver voice resonates this sentiment, occasionally leveling unnecessary behavior or activity with selfishness, irresponsibility or even at times, cruelty. 

“Please, for my children’s sake, your neighbor’s sake, your parent’s sake, our doctors & nurses’ sake, stay home. Stop being selfish, you’re literally killing people!

While the caregiver voice is not unique to the online space, this assertive and protective engagement very much is.  We will be sharing more information in the weeks ahead, as there is already a powerful story of the impact of COVID-19 on family and loved ones developing online:

My Dad died last night from COVID-19. He wasn’t an essential worker but did not have the luxury of wfh and was required to work. My family’s lives will never be the same. Cover me and my family in your thoughts and prayers. Take care of your people”. 

“My dad passed away from coronavirus last night. He was not a statistic and neither are his family. Stay home saves lives to love your family.”

The Path Forward

Verilogue will continue to monitor the evolution of this pandemic through our collection of HCP-PT dialogues, qualitative feedback, and social listening, and we look forward to sharing more information on a bi-weekly basis as the COVID-19 pandemic evolves.  In the meantime, recognizing that this is a unique resource, we encourage anyone with interest to reach out and let us know how we can best structure these updates going forward.

Best of health,

-Verilogue

The insights presented in this content piece were developed through a collaborative effort across Verilogue’s linguistic research team

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