Setting Clear Expectations for Hair Loss Treatment:

Clear Expectations For Hair Loss Patients are Important

When I was 4 years old, my grandmother taught me a valuable lesson about “expectations.” I’ve never forgotten the lesson. My grandmother never came to know she taught me any sort of a lesson. In fact, nobody came to know. It just happened. I learned the lesson. I moved on. I hoped to never to repeat my mistake again. I was just 4 years old but the memory is vivid even to this day.

My grandmother told me on the phone that she saw an amazing submarine in one of the stores she had just visited. She said that she thought of me instantly when she saw the submarine and knew that I would really like to have that submarine for myself. And so she bought it - for me.

I remember being absolutely ecstatic when I heard the news that I would soon be the owner of a new submarine.

I counted the days until I would get see my new submarine. I remember having a few practical worries. I worried that the submarine might not fit in my room let alone the family bathtub. You see, somehow in my mind, I envisioned that my grandmother had bought me an extremely large submarine and that we were going to need to find a creative way to get that massive magical marine machine to me. I can’t really remember how big I figured my new submarine was going to be.

But simply put - I figured that this submarine was going to be huge.

When the day came, and my grandmother finally visited, I did all the things that any polite 4 year old must do prior to receiving a gift. I greeted my grandmother in the proper way that I had been taught in the preceding 4 years of my life. I pretended not to know about any sort of gift that she had waiting for me. I patiently answered all the usual questions about my school, my friends, my hobbies and the like. I was calm. I hovered closely to her for over an hour, never leaving her side. If any 4 year old could engage in a bit of polite chitchat - it would me be that particular day.

I knew the moment would come that I would get to take possession of my new submarine. I don’t really know how I, as a 4 year old, actually envisioned that moment would unfold. I don’t know if I imagined loud cheering or background music or a drum roll prior to getting official ownership of my new submarine. Perhaps some sort of submarine engineer or military captain or better yet - some kind of superhero - would reach out their hand and lead me to my new submarine that awaited outside. I could not envision how it would all take place only that it was all going to be amazing.

The rest of the story is a bit of a blur. I remember the feeling of nausea more than the precise events that followed. My grandmother asked me to close my eyes and placed a 1 inch sized toy submarine in the palm of my hand. I don’t remember any of the words she said - but I sure remember her smile before I closed my eyes.

I have no idea what sort of events came next. I’m sure I thanked may grandmother for her gift. If I didn’t, I am confident that someone would have cued me to thank her. I’m sure I hugged my grandmother. If I didn’t, I am confident that someone would certainly have cued me to give her a big hug.

After all, she brought me a gift.

I was old enough to know that crying was not the appropriate response to getting a gift.

I remember going into my bedroom and feeling a unique kind of physical discomfort. I understood that my expectations were quite a bit off and it was all a very strange feeling for me.

Why did this all unfold like this? I suppose a bit of 4 year old big eyed greed coupled with magical thinking and genuine excitement caused me to have a different expectations than what was really going to happen with my submarine gift.

Expectations with Hair Loss Treatments.

Believe it or not, I think of this story of my grandmother’s gift fairly often when I help patients with hair loss. I consider it so important to help patients understand exactly what to expect with their treatments. Giving patients clear expectations must always be a part of every relationship. Some patients with hair loss have different expectations than what truly the treatment can offer for that particular hair loss condition. Sometimes, it’s the physician prescriber or internet advertiser who failed to help set clear expectations. Sometimes it’s the patient that held on to an incorrect notion as to how well the treatment worked and how likely it is for the hair to grow. Sometimes it’s a bit of both.

A while back, I saw a patient with advanced frontal fibrosing alopecia who had been to 8 different doctors before coming to see me. She was very disappointed, frustrated and saddened that nobody could help her. In fact, she had recently decided to stop all of her medications out of pure frustration. In her own words - “nothing was helping.”

When I met with her it was clear that she had been prescribed some excellent treatments by her physicians. However, her own expectation was that she could - and would - completely grow back her hair and she was not achieving this. She had been waiting to see regrowth. It was not happening.

I am not sure how she came to have that view or have these expectations about her hair. I am confident that at least one of the 8 practitioners along the way would have told her that she might not grow back any hair at all and the the goal in her case of advanced FFA was to keep it from getting worse and worse over time.

That did not matter - the expectation that she held on to now was that her hair could regrow - and that her hair would regrow - once she found the right treatment.

Together, the patient and I went through about 4 dozen photos of her spanning 3 years and reviewed 3 years of symptoms and treatments. We reviewed together that advanced stages of FFA do not regrow much hair. We also came to the conclusion together the some of the treatments she had recently been prescribed were, in fact, having a dramatic effect on her condition. In her case, the treatments were not growing back her hair like she had been expecting, but they were stopping the hair loss from getting worse. In fact, it seemed that her disease had gone from very active 3 years ago to fairly inactive over the last 6 months. Her recent stoppage of medications had led to hair shedding which too was proof that some of her prior treatments were helping.

There was a new calm in the room. The patient decided to resume her medications and left my office feeling quite a bit better about how things have gone for her so far. Within 60 minutes, the patient transformed her view from pessimistic to optimistic with a whole new set of more realistic expectations. Quite frankly, I did nothing except reset expectations - and this changed her view of the whole situation.

Why do some patients carry around incorrect expectations?

There are many reasons why patients have incorrect expectations.

1) Believe it or not, some patients are never told what to expect. For example, some patients with advanced types of hair diseases are never told that hair won’t regrow. Sometimes a new physician assumes a prior physician has told the patient the facts about the condition. It sounds strange, but it’s a fact. I’ve witnessed it many hundreds of times over the years. So sometimes the patient has no clear idea what to expect because they have never really been told. Patients develop incorrect expectations sometimes because they are never told all the facts.

2) Sometimes, a patient is told what to expect, but the information they are told is wrong. This might occur for example when a person advising the patient has very limited understanding of a certain hair loss condition and so gives the wrong information to the patient. I’ve met many, many patients with scarring alopecia who have been told that the hair loss is due to stress and that with a steroid injection or some kind of treatment it will all come back. Clearly that practitioner is not trying to deceive the patent but has mistaken alopecia areata and scarring alopecia. Sometimes, it’s a hairdresser that gives the wrong information and sets a false expectation. Patients develop incorrect expectations sometimes from the delivery of wrong information. They were told what sound like “facts” - it’s just the “facts” are wrong.

3) Sometimes, a patient is told what to expect, but the expectations are exaggerated. For example, in some cases the reason for the patent’s incorrect expectation lies entirely with the practitioner or online advertisement or TV commercial or magazine advertisement. Some people that are selling some type of treatment has a vested interest in selling the treatment. We call it marketing. Let’s face it - some types of marketing are geared to set exceptions unreasonably high. Not a week goes by that I don’t hear stories from patients that they were told that PRP, mesotherapy or some hair loss treatment for sale in a clinic or on the internet was going to completely fix their hair problems. Of course, sometimes they do! … but sometimes they don’t! Patients develop incorrect expectations sometimes because they are not given a realistic picture of the success of that treatment.

4) Sometimes, a patient does not realize that the treatment does not help everyone. Sometimes a patient feels that the treatment helps everyone. The patient feels that if they take the step to start the treatment it will likely help them too. Many treatments for various types of hair loss help only a certain proportion of patients. For those patients that the treatment does help, there is usually a spectrum of results whereby a proportion of patients get fabulous results, a proportion get mediocre results and a proportion get only slight improvement. A good example is patients starting minoxidil (Rogaine) or PRP or laser for androgenetic alopecia. Don’t think for a moment that these treatments don’t help many people - because they do. However, not everyone benefits and of those who do benefit some will benefit a great amount from the treatment, some will benefit only a little. in addition, some will get no benefit at all and a very small proportion will be worse off altogether after using it. Patients develop incorrect expectations sometimes because they assume that if a treatment is available it must help everyone.

4) Sometimes the patient is told what to expect, but the patient themselves can not let go of a certain expectation they have. Some patients have strong beliefs about what they expect will happen with the treatment. Some patients are told that some types of advanced scarring alopecia are not going to regrow. Some believe that information but some patients do not. Some go searching from practitioner to practitioner until they finally find a practitioner who says that they can get the hair to regrow. If it does not work, the patent keeps searching. Patients develop incorrect expectations sometimes because they can’t let go of their own firmly held wishes and beliefs.

Conclusion

It is important for patients to have clear expectations regarding the treatment they are about to start. Part of the responsibility lies with the physician to explain the treatment and how well it works. It is the practitioner’s responsibility to clearly explain what proportion of patients are likely to benefit a great amount from the treatment and what proportion are likely to benefit only a little and what proprotion are likely to not benefit at all. If this information is not known, it is the responsibility of the practitioner to relay this information to the patient and explain whether or not the treatment is truly best regarded as ‘experimental.’

If it’s a company selling a product, part of the responsibility lies with the company to explain the treatment and how well it works - and does not work.

I still remember that feeling of disappointment I had when that 1 inch submarine was placed into my palm. The disappointment came about from wrong expectations that I had formed. Of course, one could also argue that my grandmother was also at fault in how I formed my expectations - but everyone knows that grandmothers are never truly at fault about most things so that kind of discussion is best left alone.

As practitoners, it is critically important that we help our patients to develop clear expectations about the treatment they are about to begin. Is is likely to help? What exactly is the expected outcome? Is it more likely to not help than help? if it does help, how likely is it to help alot? f it does help, how likely is it to help a little?

There is nothing wrong with setting the expectations very high if the treatment is likely to work amazingly well. For example, when I inject a single patch of hair loss in patients with alopecia areata, I tell patients that it is extremely likely to grow back. The odds are 90 %.

Expectations should not be set too high if the treatment is likely to work partially or only a proportion. For patients with alopecia areata who have heard amazing things about JAK inhibitors ( tofacitinib, Ruxolitinib) I share their excitement. However, I think it’s important for patients to know the incredible statistic that that 70% of patients with advanced alopecia areata will get their hair back - but the number is not 100 %. We need to give hope, I completely agree. But we need to protect the 30 % of patients who will not have good results with this drug. If we send every patient prescribed JAK inhibitors home with the incorrect belief their hair is guaranteed to regrow, we are doing a disservice to 30 % off our patients. Advising all patients with advanced alopecia areata who start tofacitinib or any JAK inhibitor that they will be guaranteed to get their hair back is not reasonable.

Finally, let me point out that setting clear expectations is not mutually exclusive from giving patients hope about their treatment. We can give patients hope if there is reason to be hopeful and we can give clear expectations.

A while back, I wrote an article about Hope - and what it is and what is is not. Hope and clear expectations are very similar. We indeed can give hope and give clear expectations at the same time. One should not view them as mutually exclusive.