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

%d bloggers like this: