AARDA received 450 individual responses to the Patient Experiences with Chronic Pain Survey this June. The findings illustrate the key needs of patients in pain and provide a snapshot of how individual patients experience pain in their daily life.
Many patients with an autoimmune disease experience chronic pain. But the way individual patients experience and manage pain is often unique to their circumstance. What’s not unique is that living with and treating chronic pain can impact all aspects of a patient’s health and overall quality of life. As we gain a better understanding of how pain affects patients, we are learning that many individuals experience challenges finding treatment options that effectively help them manage their symptoms and live the life they wish to lead. When patients aren’t able to find treatments that address their condition, it can cause negative health, emotional, and financial consequences.
We at the American Autoimmune Related Diseases Association (AARDA) are committed to understanding the unique experiences and challenges of those living with pain and are working to promote policies and innovation that bring new, more effective treatments to patients. This June, AARDA launched a Patient Experiences with Chronic Pain Survey to give patients a platform to share their experiences living with chronic pain and understand how we can better meet their treatment needs. Over 450 individuals responded to the AARDA survey, and several key trends emerged as we reviewed the findings.
53% of respondents (232 individuals) said “I want new treatment options for my pain.”
It is critical that federal policymakers and regulators create vehicles to expand research and innovation to evaluate new, non-opioid treatment options for chronic pain and new approaches to manage acute and chronic pain.
“More medical research on how pain works and new medications with less dependence and side effects.” – Anonymous, when asked “what supports would help you in addressing your pain management needs.”
60% of respondents (271 individuals) rated the intensity of their pain as 6/10 or higher since COVID-19 began.
As the COVID-19 pandemic has required many individuals across the county to follow stay-at-home orders and social distance guidelines from state and local officials, it has disrupted many patients’ normal activities and intensified their pain symptoms.
“My pain goes up and down and COVID-19 has been especially hard as I am unable to have regular massage and use the health club food for therapy. I have been having trouble with my hip and therefore have not been able to get out and walk as my muscles tense so much.” – Marissa S.
“Chronic pain makes life much more complicated. My regular exercise routine has been disrupted by COVID-19 restrictions on gyms.” – Anonymous
60% of respondents (272 individuals) said their chronic pain increased their healthcare costs.
86% of respondents (389 individuals) said their chronic pain causes sleep disruptions and decreased their quality of life.
66% of respondents (301 respondents) said their chronic pain caused them to miss time with family and friends.
When patients are not able to find an effective treatment plan to manage their pain, it can require additional visits to the doctor, lab tests, and prescription costs. For those same patients, chronic pain can have a significant negative impact on all aspects of an individual’s life.
“I can’t live the kind of life I would like to live. I miss time with my children and family, and time with my friends. There are things I want to experience in life but do not have the time or energy to do because of my chronic illness. I spend a lot of time resting, and it seems that whatever activities I engage in I need to rest for twice that long afterwards. I feel like I’m missing out on life.” – Valorie E.
66% of respondents (301 respondents) said their chronic pain makes them feel sad or depressed. Another 60% (272 respondents) said their chronic pain makes them feel withdrawn or isolated.
Patients who are not able to manage their chronic pain can experience depression and social isolation, and often chose to withdraw themselves from normal activities with friends and family.
“I am not the happy energetic person I once was. I am depressed and anxious especially because of a rare blood disorder with a high mortality rate. Living with daily chronic pain wears me out physically and mentally. I want my life back or at least as much of it as I can get.” – Debbie J.
23% of respondents (103 individuals) said “There are no doctors who understand my pain.” Another 21% said “I don’t have access to a doctor who understands my pain.”
The patient-physician relationship is important to ensuring that patients receive timely and effective care to treat their chronic pain. We must create an environment that allows patients to have open conversations with their providers about their pain and create a better treatment experience.
“I cannot even get a referral due to my doctor’s attitude. He feels that my AI diseases are being treated, therefore I cannot be in pain.” – Anonymous
The findings of our survey remind us how chronic pain affects so many of the patients we serve, and where we can prioritize our efforts to promote policies, resources, and patient experiences to ultimately improve outcomes for the millions of Americans who live with pain today.