15 posts from May, 2017

It’s Clinical Trials Day, and patients are driving change

Posted May 19th, 2017 by

Today is Clinical Trials Day – celebrated to bring more attention to public health and also to recognize the contribution of the patients and healthcare professionals who make clinical research possible. At PatientsLikeMe, it’s members who are changing the way clinical trials are designed.

Bringing the patient voice to clinical trials has long been part of the PatientsLikeMe mission. Jeremy Gilbert, Vice President, PLM Health and Paul Wicks, Ph.D., Vice President, Innovation, sat down with us last year to talk about the importance of putting patients at the center of drug discovery and development. Check out their Q&A here. Recently, Paul Wicks touched on the purpose behind the latest PatientsLikeMe study on clinical trial design involving the patient perspective, and why organizations need to work on improving their trial process:

“As researchers we know that clinical trials are the best tool we have for identifying new, safe, effective treatments. Patients know this, too, and they’re motivated to take part. But what this research tells us is that actually participating in a trial is not a fun experience; about as much fun as dealing with the worst airlines, banks, or utility companies, and we all know how that can be. This is a call to action to trial designers and sponsors to step up their game and understand that while patients volunteer out of altruism, a clinical trial still has to fit into their daily life and should create as little burden as possible if we want people to enroll and see it through to the end.”

-Paul Wicks

4,718 PatientsLikeMe members took part in the survey, and below is just a snippet of what they had to say. The complete findings of this study have also recently been published – take a look!

How do patients learn about clinical trials?

59% of those who responded said they learned about a trial from their health team, while 24% said they learned via the web. For those who participated in past trials, the first person to suggest they participate was a doctor (43%) or another healthcare provider (19%), and 80% of respondents said they took part in the trial based on their own desire to.

A key takeaway from the study:

Most people are still finding out about trials through their care teams or providers, but when it comes to making a decision to take part, it’s their own desire that motivates them.

Paul Wicks weighed in saying, “We think patients are interested in participating in research in general because of altruism, that they choose to enroll in a particular trial because of its objectives, and that they stay enrolled because of their relationship with trial staff and the level of burden the study incurs on their daily lives.”

What are patients’ impressions of clinical trials?

Of those who responded, 55% were very or extremely satisfied, and 51% would tell other patients about the trial.

Jeremy Gilbert touched on the issue of patients providing feedback following a trial, “We’re starting to see another gap now, which is that companies have no way of soliciting feedback from patients as they participate in a trial, to find out what patients think of real trials. This is a surprise, because given most of us are consumers, we’re used to being able to give feedback about a product or our experience at any time.”

9% of those who answered the survey considered dropping out of their trial — side effects and worsening of overall health after the trial were the main reasons. Following the conclusion of a trial only 38% of patients recall being told about the results.

To find out more about clinical trials and how to get involved, visit the PatientsLikeMe clinical trial finder tool. Find a trial that’s right for you, search by location, phase, intervention type and more.

Thank you to all who participated and shared their experiences to help bring the patient perspective into improving clinical trials.

Share this post on Twitter and help spread the word.


Women’s Health Week: Ginny reflects on motherhood and “the perfect storm” of epilepsy and mental health conditions

Posted May 19th, 2017 by

In honor of National Women’s Health Week, Team of Advisors member Ginny (Mrslinkgetter) shares what it’s like to live with multiple health conditions – including major depressive disorder (MDD), generalized anxiety disorder and epilepsy – as well as grief following the death of her son (who also had epilepsy and major depression). On PatientsLikeMe, hundreds of members report living with epilepsy along with depression and/or anxiety.

“I’ve had anxiety from my earliest memories,” she says. In her early 30s, she also began experiencing MDD. She was dealing with a move, very active children, and worsening migraines, pain and other symptoms.

“It was the perfect storm,” she says. Read on for more of her story, plus her tips for women dealing with multiple health conditions in their family.

My name is Ginny. I had 12 years of misdiagnosis, until I was appropriately diagnosed with epilepsy, psoriatic arthritis, major depression and anxiety.

In the middle of dealing with my own health issues, my son was diagnosed with epilepsy. I felt overwhelmed – extreme exhaustion beyond the norm for a mom and wife.

When I started Topamax, a seizure medication for my epilepsy, it raised my anxiety and I told my neurologist I had to have a depression/anxiety medication. While Topamax increased my anxiety, it also helped to lower my seizures and helped me regain my ability to think. Seizures were robbing my ability for complex thought. I still take Trokendi XR, a form of Topamax. Everyone’s response to these medications is unique, so talk with your doctor about how they affect you, especially if you have suicidal thoughts.

As a mom, I was unable to see how much my depression was impacting my parenting until I was on medication (Cymbalta) and started feeling less anxiety and depression. One month later I was traveling alone and I suddenly realized that I felt zero anxiety on the plane, elevator or city taxi – I felt freedom for the first time, ever!

“I realized my spouse and kids had a less than effective mother than they could have had during some of those years. I do not dwell on this since I cannot turn back the clock. I use this to tell other parents: I did the best that I could during those years – part of the time I did not even realize that I had depression and anxiety.”

Doctors and specialists were reluctant to diagnose me with depression. I was even placed on a depression medication at one time “to help with the migraines.” I was concerned because I did not want to be thought of as “crazy.” If my doctor had been more honest and said she felt I was depressed and I should try this medication, it would have been wiser. A doctor who can say, “sometimes depression also causes physical symptoms” – true fact – helps the patient to understand this and make informed health care decisions. 

“Being a mom when you have many physical and emotional issues is very challenging. I often put my children’s needs first. I got to the point when I knew I had to take care of my needs.”

When I did this, I knew I was doing the best for all of us. I could not take care of them if I was too depressed, too anxious or in too much physical pain. I teach this to other parents, at well.

My son’s anxiety was noticeable even at age 3. He was diagnosed with it formally at age 11, but not placed on medications for depression and anxiety until after his first two suicide attempts at age 15.

Sam’s mental health issues seemed intermingled with his epilepsy. They can be bi-directional, meaning they can occur before or after one another, according to Dr. Andres Kanner, who has studied how they’re related. Depression is the psychiatric disorder that occurs most frequently with epilepsy (affecting 20 to 50% of people with epilepsy, depending on epilepsy type). Learn more here. The suicide risk in people with epilepsy is more complicated. If you or someone you know expresses suicidal thoughts, please seek help through crisis resources like these.

Sam’s health issues taught me that we are so much more than a list of conditions. He taught me how to deal with – as well as how to advocate for – a person trying to cope with these life-and-death conditions. I learned how to speak to him and the importance of including people – a child, teen or adult – in decisions about their care.

I became an advocate at the national and state level so that our representatives could begin to understand what patients and families endure.

I found a program through the Epilepsy Foundation and asked if he wanted to apply to go to Washington D.C. to talk to senators and congressmen. He got in and we went. That began our lifetime odyssey.

People around the world learned about Sam’s life and death because others went on telling his story through the Epilepsy Foundation and the websites we went on. People had watched him grow from a little boy to a 20-year-old man. At 16, Sam used his artwork to help others with depression to find hope and help by creating Preventing Teen Tragedy.

I cope with my grief through continuing to help others. I had a non-profit for six years that worked with the Epilepsy Foundation. I was trained as a grief specialist. I use portions of Sam’s story with my clients at work as a Mobile Crisis family partner. I also talk to others online.

PatientsLikeMe has been a safe place for me to come and share, first while Sam was still alive. Now, having a safe place to come and read and talk has been such a great coping method for me. I cannot always share about my son fully in other places because people become uncomfortable. Sam died of suicide on his fourth attempt. 

“People forget that when a mother talks about her son, it is not about his death, it is about the fact that he lived. I have lost so many of my friends because they do not know what to say so they just stay away from me because they are not comfortable.”

Mental illness is not a weakness. Depression and anxiety are conditions of an organ in our body and should be treated as such. I can come to the website and know that others have answers to help me through the rough times. I do not need to weather this journey alone.

My tips for women and moms living with mental health conditions: 

  • Take care of yourself through a healthy diet. Depression may cause under- or over-eating. Do your best to work on changing how you eat.
  • Exercise, even when you don’t feel like doing it. I am 54 years old, work a 12.5-hour shift four days a week and do not feel like working out a lot of the time. I am adding in yoga, stretches, walking, and whatever else I can to keep moving. This helps all of my conditions.
  • Involve children in eating well and exercise. We used to kayak, play tag, walk and do what we could to stay active. When I felt moody around the kids I would tell them, “OK, it is time to walk the grump.” Before we would reach the end of the road, all of us would be in a better mood.

Share this post on Twitter and help spread the word.