Pain for chronic patients is not merely a condition they must manage but a social dynamic with various feelings and opinions. Its psychological impact is often understated, though it carries the same weight as pain’s physical effects.
At this year’s annual Pain Therapeutics Summit, which took place in San Diego, CA, October 19 to 20th, I heard brilliant presentations on novel pain medication development, targeted discoveries, pain classifications, the NIH HEAL Initiative, trial designs, biomarkers, and others. Throughout, I couldn’t help but have the journey of the patient at the forefront of my mind while I listened.
As many of you have attended medical conferences, meetings, or symposiums, you will know that they often focus on advances in medicine or improvements in standards of care. However, given the history of pain management in the United States and globally, it’s important to focus on the patients and their suffering.
Below are three points from the summit that stood out most prominently to me, but there are many more aspects of a patient’s journey to consider. In fact, these takeaways represent only the tip of the iceberg as food for thought in hopes of bringing deeper contemplation, understanding, and empathy to pain therapeutics.
1. The Risk and Benefit Equation for Pain Patients
For patients suffering from high levels of pain, chronic and otherwise, we need to be cognizant that they have a different perspective on risk and benefit. To begin, it’s important to understand the higher level of risk patients are willing to take to achieve a lower level of relief than one might initially think. Pain can be a debilitating and hopeless feeling, driving some to a level of desperation where just a small degree of relief can make a considerable difference.
This desperation is apparent through the higher suicide rates for individuals suffering from high levels of pain. However, pain treatment shouldn’t resort to a “whatever it takes” approach. Instead, the medical community and regulating agencies need to balance all aspects when making decisions, working in partnership with their patients. Collaborating with patients plays a fundamental role, as each treatment discussion and decision-making process varies based on individual patients.
2. The Need for Greater Information Sharing to Allow Patients to Make Informed Decisions
Since each patient and their pain condition is unique and varies, the advocacy groups present at the at the Pain Therapeutics Summit shared with us that patients want more information. They look to their doctors to inform them of clinical trials and treatment options by way of medication or surgical intervention, but they are also interested in learning about nontraditional modalities to achieve relief.
Pain is not simple; it is not just mere unpleasantness that can be remedied with a pill. It’s also necessary to consider diet, mobility, sleep, and psychological effects. When looking at pain, all aspects must be considered, which is why support and advocacy are cornerstones for pain patients. They need to feel understood and supported, and I extend my deepest gratitude to those who do so.
3. The Burden of Participation in Clinical Trials
I was most surprised during the conference to hear that participating in a clinical trial can be rather daunting for pain patients. Imagine if getting out of bed each morning was so excruciating that you would want nothing more than to pull up the covers and stay there all day. Next, imagine a clinical trial schedule that requires you to attend various clinic visits; otherwise, you would be terminated from the trial. From going to clinic visits and arranging a friend or caregiver to take you to the drive itself and self-care preparation, it’s truly a horrible position to be in.
I contemplated how a decentralized trial model may be more conducive to participant compliance and study satisfaction. The advocacy group representatives present also recommended allowing for protocol review by an actual pain patient to obtain their perspective on the burden of participation.
As mentioned, these are but a few topics for contemplation. There are innumerable factors to consider and deeper discussions to be had. Personally, I have always thought of the “patient journey” for any trial I have worked on. However, for pain indications, another level of reflection is needed. I am humbled to work with my peers who are as passionate, empathetic, and understanding of these patients in need.
If you’re interested in learning more about pain therapeutics research, check out our pain expertise.