The chasm between patient experience and clinical practice

Can you guess what this abstract relates to without clicking on the link:

ABC is advisable if the patient does not show sustained improvement after a year of active treatment by other indicated means. The operation often represents the turning point in effective treatment. After the first year of ineffective treatment valuable time is being lost, with danger of fixation and deterioration. Then it is safer to operate than to wait. Calif Med. 1958 Jun; 88(6): 429–434.

That operation was last carried out in the 1960s. 40-50,000 were performed in the USA alone. This is what was reported about one person post op:

The reason for Dully’s lobotomy? His stepmother, Lou, said Dully was defiant, daydreamed and even objected to going to bed. If this sounds like a typical 12-year-old boy, that’s because he was.

What is being described below in 2011?

Remission of diabetes mellitus occurs in approximately 80 percent of patients after XYZ. Other obesity-related comorbidities are greatly reduced, and health-related quality of life improves. Complications and adverse effects are lowest with laparoscopic surgery, and vary by procedure and presurgical risk. Am Fam Physician. 2011 Oct 1;84(7):805-814.

In the same abstract the authors, Schroeder et al say:

The family physician is well positioned to care for obese patients by discussing surgery as an option for long-term weight loss…. Patient selection, pre surgical risk reduction, and postsurgical medical management, with nutrition and exercise support, are valuable roles for the family physician.

What do we know about this surgery?

According to the Schroeder:

Complications and adverse effects are lowest with laparoscopic surgery, and vary by procedure and presurgical risk…. Overall, these procedures have a mortality risk of less than 0.5 percent.

Here are some videos of what we are talking about. So what’s the patient experience?

Immediately post op:

Days 7-10: Now, at this stage, I shall only eat 4-6 Tablespoons of food each “meal” and I should have 5-6 meals a day. I can add mashed potatoes, custard, and pudding, but I must be VERY careful to keep it really low sugar and really low fat. Otherwise, my tiny pouch will rebel and make me regret it. Big Fat Blog

After a couple of years:

I had a lap-band. Then I had it removed after 2 years. The restrictions on drinking meant that exercise was difficult. And while I’ve felt emotionally broken for years, those two years were the only time I’ve felt physically broken. The experience was miserable. Big Fat Blog

Years later:

….almost 12 years later, there are still foods I have trouble eating. It still takes me 30 to 45 minutes to eat a meal, even if it’s just a sandwich and some chips. I have to stay away from anything that has a lot of sugar or a lot of grease in it (explosive diarrhea is not something you want to deal with in a public space, take it from me, been there done that). Big Fat Blog

Here are reflections from another blogger:

  • A few months after my surgery I started to have significant hair loss.
  •  It is important to take your vitamins.
  • There have been times that I have forgotten and do drink after I have eaten and when I do this I become quite uncomfortable and this is the occasions I may feel the need to vomit.
  • My taste buds have changed.
  • After I eat most of my meals or have a drink I get a little burppy. Not sure if it’s because I have eaten my meal too quickly (which I do), but it’s a side effect that hasn’t gone away.
  • This is really hard, everybody knows I have had the surgery but what they don’t understand is how little I can eat. I have to remember to ask for a small plate of food and I feel awful when I can’t eat all they gave me.
  • I hit a dark place about 2 weeks in, as I could only drink soups, watered down gatorade, sorbet etc. I really struggled with people eating around me being that I couldn’t eat.
  • I have tuckshop arms, which only recently have started to bother me like this morning when I saw them wobbling when I was drying my hair. It also does get me down a little when I lift my arm up and I notice people noticing my arms. I have an apron fold on my stomach from my pregnancy with the twins. When I have lost all my weight I would like to get the excess skin on my stomach removed. I will only do this when I have lost all my weight though. The organised housewife 

Experience of referral:

A few years later I moved and had to find a new primary care physician. She suggested Weight Loss Surgery… I asked her if she was familiar with WLS research regarding success (lack thereof), mortality rate, etc. After she answered, no, I asked her how she could recommend such a surgery when she was ignorant of its effects. She had no answer. Big Fat blog

So back to the literature (note the dates):

Undergoing laparoscopic sleeve gastrectomy induced efficient weight loss and a major improvement in obesity-related comorbidities, with mostly no correlation to percentage of excess weight loss. There was a significant weight regain and a decrease in remission rates of diabetes and, to a lesser extent, other comorbidities over time. JAMA Surg 2015


Not all bariatric patients, however, experience mental health gains from weight loss surgery, which is likely attributable to patients’ reactions to common undesired physical outcomes postsurgery: lack of weight loss, weight regain, and undesirable skin changes. Patients’ expectations that bariatric surgery will undoubtedly change their life may also set them up for psychological failure if expectations are not met. Journal of Obesity 2013

Finally we might reflect on the lobotomy as per Gregory Myers:

  1. The surgeon who introduced the world to the lobotomy was awarded the Nobel prize
  2. Some thought it was better than the alternative
  3. There was poor patient follow up
  4. It had significant adverse effects
  5. There was inadequate patient information and consent
  6. It destroyed people’s lives
  7. It was often a rushed procedure
  8. The indications for this invasive surgery were not limited to severe illness
  9. It was replaced by drug treatment

Is history repeating itself? It may by relevant that the global bariatric surgery market size was valued to be over USD 1,300 million in 2014.

Picture by rossodilbolgheri

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