Yesterday’s post, Cholangiocarcinoma Risk in Pediatric PSC-IBD Plus one, was updated with the following caveats:
At the same time, the authors acknowledge limitations including a highly-selected patient population (selection bias) and relatively small number of patients. The absolute increase in risk for cholangiocarcinoma is not known. This study did not provide an estimate of the number of patients with IBD-PSC who develop cholangiocarcinoma; it only provides data on those with cholangiocarcinoma (thus no denominator to establish risk).
Daniela Lamas, NY Times 4/20/25 (likely has a paywall): A Good Doctor Knows When to Bend The Rules
An excerpt:
“My patient had been intubated with Covid-19 for weeks, her lungs growing stiffer each day. Her sons held vigil at the bedside, pausing only to critique the nurses and health care team. They didn’t like the way the nurse turned their mother. They demanded yet another course of antiviral treatment for Covid-19…The son pulled a pill bottle from his backpack. It was a mixture of herbs that he had ordered off the internet. He wanted me give the supplement to his mother through her feeding tube, along with her other medications…
Doctors may agree to give their patients probiotics because they are harmless, even though the evidence for their effectiveness is weak in most cases. They might prescribe an unnecessary antibiotic. They might even agree to spread out the timing of pediatric vaccinations at a family’s insistence...
For Dr. Brown…he could justify prescribing the drug to build rapport…Dr. Van Scoy sees acceding to requests for unproven medicines as a “slippery slope.” When doctors prescribe medications that they don’t believe in, even ones that pose little risk to the patient, it can cost them the trust of their colleagues…
But when distrust is so entrenched, as is the case in the United States now, that ideal might not be achievable — especially in our conventional clinical practices where doctors have some 15 minutes with each patient…
We ask our patients to trust us implicitly, to believe our diagnoses and to undergo courses of treatment they might not understand. This doesn’t mean that we need to give patients whatever they want just to level the playing field. But we can take their requests seriously, even if we wouldn’t have considered them otherwise.”
My take: In the pediatric GI realm, I am often asked to do low yield procedures (eg. esophagogastroduodneoscopy, colonoscopy), low yield imaging (eg. MRI, CT scans), allergy testing as well as numerous dubious treatments.
One measure of how likely physicians in our group are at ‘bending’ to patient wishes is evident in study that we did looking at the yield from colonoscopy. Among 16 physicians, the diagnostic yield ranged as low as 22% to as high as 86% with an overall diagnostic yield of 48% for colonoscopy. Thus, it is clear that physicians have widely different approaches in accommodating family pressures.
Related blog posts:
- Our Study: Provider Level Variability in Colonoscopy Yield
- Why Are So Many “Low Value” Endoscopies Performed?
- Does negative testing reassure patients? | gutsandgrowth
- Trying to make Cents out of Value Care
- Adverse Events Following Pediatric Endoscopy –Underestimated Previously
gutsandgrowth 
Any pediatric studies that demonstrate potential benefit of doing an intervention that leads to reassurance?
When is “satisfaction” or Google reviews not the focus of our achievements?
Less experienced physicians may do more interventions due to less experience and to respond to the 2 prior questions.
My impression is that the reassurance of doing interventions is usually short-lived (JAMA Intern Med. 2013;173(6):407-416. doi:10.1001/jamainternmed.2013.2762). This study concluded that “Diagnostic tests for symptoms with a low risk of serious illness do little to reassure patients, decrease their anxiety, or resolve their symptoms, although the tests may reduce further primary care visits. Further research is needed to maximize reassurance from medically necessary tests and to develop safe strategies for managing patients without testing when an abnormal result is unlikely.”
I have had some parents who have been disappointed when a big workup was not recommended or even if I did not want to treat their child in a certain manner (ie. using proton pump inhibitor in an infant with colicy symptoms).
JAMA Meta study looks at adult patients. We are dealing with a different patient population.
Gastrointestinal Endoscopy. 2014;79(5):699-710. doi:10.1016/j.gie.2013.08.014
Acta Paediatrica (Oslo, Norway : 1992). 2020;109(4):827-835. doi:10.1111/apa.15027.
Journal of Pediatric Gastroenterology and Nutrition. 2018;66(3):516-554. doi:10.1097/MPG.0000000000001889
Those studies support the primary goal of pediatric endoscopy is diagnostic, it also plays a significant role in providing reassurance to parents by ruling out serious gastrointestinal condition.
While the JAMA Meta Study consists of an adult population, in my view, there really is not a good pediatric study looking at this question. Though, anecdotally many parents are reassured by normal testing, the exact benefit of this is not clear to me based on published studies. In addition, undergoing testing for reassurance does not need to be an endoscopy. In addition, as you know, serious gastrointestinal conditions, which are uncommon in children/adolescents, are often suspected prior to evaluation and rarely discovered incidentally with endoscopy. Also, the references you provided don’t offer significant insight into the issue of reassurance with negative testing. The first reference focuses on indications/preparation for endoscopy; the second indicates that upper endoscopy in the pediatric age group has a low yield, and the third reference provides pediatric reflux guidelines.
My personal goal is to minimize low yield procedures when having conversations with families. Most families in need of reassurance do not need an endoscopy for their child. Though, there are some that will not be satisfied even with normal endoscopy/imaging/lab testing and keep pushing to look further for very rare causes.
I think a parallel to “accommodating family pressures” is “accommodating institutional pressure” or “accommodating hospital administration pressure” to reach revenue goals. I think this aspect is a bigger issue. Also, flexible sigmoidoscopies in pediatric patients also are not really helpful (see https://pubmed.ncbi.nlm.nih.gov/37288178/).
Good points.