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.