4 posts from April, 2008

ALS Patients: Give us the truth about cognitive change

Posted April 23rd, 2008 by

European Journal of Neurology

One of the things we’re most proud of at PatientsLikeMe is our ability to rapidly carry out research. There are some obvious benefits online: patients can can take part whenever they want, take as much time as they need (often using assistive technology), and are more likely to be open and honest about subjects that could be embarassing.

We recently published a paper in the European Journal of Neurology that’s a great example of this. For many years doctors have known that a small number of patients with ALS (~5%) develop frontotemporal dementia, which causes personality changes, unusual behaviour, and severe cognitive problems. A larger proportion (~33-50%) suffer much milder cognitive problems, such as getting words “stuck on the tip of their tongue”, finding it difficult to multi-task, or difficult to plan complex sequences of events like planning a vacation. A recent review in Lancet Neurology gave a thorough run-down of the literature, the ALS Association has published a guide for families, and there have even been two conferences held just on this topic.

Despite this, our study of 247 ALS patients found that:

  • 85% of patients were told they might experience problems walking
  • only 11% were told they might experience cognitive change
  • The patient literature around ALS continues to promote the myth that “the mind remains unaffected” in ALS.

Doctors may feel that they shouldn’t burden families with knowledge about a symptom that may never affect them, but we found that most patients and carers would have liked to have been told. It’s not even clear that witholding the information had much effect anyway, as many respondents reported having found this out through other sources, regardless of what their doctor had told them. One caregiver told us:

My husband… had uncontrollable crying the last few months of his disease, as well as frontal lobe confusion. This was not ever discussed with the neurologist, but when I called about it I was told that it does happen sometimes with this disease… I called the doctor to be told it sounded like the frontal lobe thing. I think doctors need to do a better job educucating the patient throughout about all possibilites of what could happen so the patient’s caregivers aren’t so helpless.

Whilst we understand that healthcare professionals are doing their absolute best to manage people’s expectations and fears about their disease, it seems clear that when it comes to patients accessing information about their disease, the genie is out of the bottle. Now that doctors are no longer the sole conduit of specialist knowledge we need to have a dialogue about how to help patients get the best outcomes.

PatientsLikeMe member pwicks


HIV: The Story is Far From Over

Posted April 8th, 2008 by

Recently, PatientsLikeMe opened a community for people affected by HIV, our first outside the area of neurological diseases. Since then, we’ve gained some 700 patients in the community, including a member who goes by the name of “BrightonBear.” His experiences are quite unique as he’s been living with HIV for more than 25 years and has seen first-hand many of the tremendous changes that have happened in that time. Through my conversations with him, I’ve had to revise a lot of my views about HIV.

Part 1

Part 2

A few years ago, I did my PhD on the psychological impact of Amyotrophic Lateral Sclerosis (ALS, or more commonly called Lou Gehrig’s disease); a mysterious and rapidly progressive condition with no effective treatment and little public recognition. In examining other disease areas, I would sometimes look over the fence to other conditions to get a glimpse of what the future could be like. My hope was that one day, with a lot of work, we could replicate in ALS the great medical success story that has been HIV. In just 25 years, survival time has gone from being very brief to being effectively normal. The mechanism of the virus is well-understood, and as long as people have access to treatment, the problem is solved. Right?Through talking to BrightonBear I’ve learned that things are rarely so simple! Whilst anti-retroviral drugs have undoubtedly been a great scientific discovery, they require an almost obsessive level of compliance to avoid the development of drug-resistant strains. The problem is: if a drug regime doesn’t fit with a person’s lifestyle (say he/she does shift-work for instance), it’s going to be very hard for that person to stay compliant. It’s also worth pointing out that many people with HIV never feel sick, except for the side effects of the medication. So, here you have people living with HIV who feel well, but are being told they have to be 100% compliant with meds that made them feel nauseated, fatigued, or even change their appearance. If they decide to take a break from their meds for a while, they may feel much better as they’re no longer experiencing the side effects, but they risk developing drug-resistant strains of the virus whilst they do so. This is a very tricky and counter-intuitive balance to maintain.What’s really interesting to me as a psychologist though are the psychological issues that affect people with HIV. A positive test could have a massive impact on past, current, and future relationships. It can cast a cloud over happy memories of past relationships, introduce issues of trust and intimacy in current relationships, and present a real challenge in forming new ones. When I was first researching HIV, I was surprised to come across special dating sites just for people with HIV; where people could find others who would not be as judgmental or prejudiced about what it’s like to live with the virus. Today, people are turning to social networking sites. AIDS.gov is also hosting a blog series about how people with HIV and AIDS are using online communities to connect with one another. PatientsLikeMe is profiled on the blog this week, along with interviews from some of our members.

The message that comes across to me most strongly, however, is that HIV is still here. Sometimes it feels like the media has decided that HIV is a story that’s been resolved; science found the cure, so roll the credits and let’s all go home. But, in my opinion, we need to shift our views and understand that whilst we’re no longer confronted by images of people dying from HIV, the people living with HIV still need our support. I’m very grateful to BrightonBear for sharing his experiences with us, and helping me and many others understand that the story of HIV is far from over….

PatientsLikeMe member paulwicks