I remember when I was first taught to dictate consultations. I was a resident doing a genetics rotation. My mentor, Peter Dignan, made several suggestions. One was to try to always include something nice about the patient. Many of my current colleagues are amused how many of my patients are ‘delightful.’ While there are a lot reasons for putting some kind information in the medical record, Dr. Dignan emphasized that patients and families can get hold of their records and undoubtedly they would appreciate a friendly word. Now with the 21st Century Cures Act Final Rule, access to records and notes will expand considerably and Dr. Dignan’s advice is probably even more important.
A good source of information on this new law, which is in effect Nov 2nd, 2020, is from the 33charts blog—Cures Act Final Rule – How It Will Change Medicine: “The ONC Cures Act Final Rule (Cures Rule) is the biggest health care law you’ve never heard of. But it’s a law that’s going to fundamentally shift the way we see patients and their information. It will change how physicians talk to patients about information. It will shift the way health professionals connect patients to their information.” This blog post details how this change is going to affect both healthcare providers and families. The two key changes are
Access to clinical notes (ie, ‘open notes’)
Immediate release of tests and studies.
The key point: “The Cures Rule will force health systems to be better stewards of information on behalf of our patients. I think this is going to force health professionals to help patients think about information and what they do with it. It will force patients to recognize the difference between information and knowledge and wisdom. I suspect that the most critical ultimate change will be transparent conversations and more timely physician follow-up on high stakes studies.”
Some additional information (from EPIC training) — there are limited exceptions for note sharing:
My take: When this rolls out, a lot of physicians (myself included) will need to make some adjustments; since it is the law, don’t expect to avoid these changes. I expect early on this will generate a lot of additional questions and phone calls. In the long run, this is likely to improve communication, transparency, and availability of patient information. For example, it is more likely that needed lab results from referring physicians will be more available after this law is in effect.
The authors state that both a PPD or TB Blood Test (aka Quantiferon-TB Gold) are reasonable for most individuals, though they have a preference for the TB Blood Test.
For those with history of BCG vaccination, the TB Blood Test is recommended
Steroids are associated with negative PPD and indeterminate TB Blood Test.
The authors advocate baseline testing prior to biologic therapy for everyone.
Annual testing: For those in high TB endemic areas, “we propose yearly chest x-ray in addition to IGRA [TB Blood Test]…in low endemic areas…we do not perform yearly chest x-rays nor do we check yearly IGRA unless mandated by a patient’s insurance.”
My take: TB blood testing is more convenient but more costly. The authors indicate that for patients from low endemic areas, yearly TB testing is mainly to check boxes mandated by insurance companies rather than improving care.
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Methods: Freedberg et al collected data from 1620 patients who tested positive for SARS-CoV-2 no more than 72 hours following admission; 84 of the patients (5.1%) had received famotidine (any dose, form of administration, or duration; median dose of 136 mg) within 24 hours of hospital admission.
Key finding: After the authors adjusted for baseline patient characteristics, use of famotidine was independently associated with risk for death or intubation (adjusted hazard ratio 0.42, 95% CI, 0.21–0.85). This did not change after propensity score matching to balance covariables (hazard ratio 0.43, 95% CI 0.21–0.88).
My take: While these results indicate that famotidine may improve outcomes with COVID-19, a randomized controlled trial is needed to confirm these findings (currently one is underway to determine whether famotidine can improve clinical outcomes in hospitalized patients with COVID-19 (NCT04370262)).
In some patients with celiac disease, institution of a gluten-free diet may be detrimental without good dietary counseling as a highly-processed diet can increase the risk of adverse cardiovascular events.
In total dietary surveys were completed for 100 children with celiac disease. Key findings:
77% consumed processed gluten-free (GF) foods multiple times per day
20% ate exclusively processed GF foods
The main reasons for processed GF foods were convenience and taste
Patients and families interest in dietary counseling diminished with time. In children <1 year from diagnosis, 35% were interested in dietary feedback, compared to 18% 2-3 years after diagnosis, 15% 4-6 years after diagnosis, and 11% at 7+ years from diagnosis
The authors speculate that highly-processed foods are leading to obesity which is increasingly reported in pediatric celiac disease.
The greatest opportunity for dietary counseling is at the time of the diagnosis.
Children with celiac disease commonly consume an unhealthy diet and are at risk for the same types of outcomes as children without celiac disease who also frequently consume an unhealthy diet
Treatments regimens utilized infliximab dosing of 10-22 mg/kg/dose with initial three doses over 2-4 weeks. Other prior treatments in these patients included antibiotics (eg. vancomycin/gentamicin) and corticosteroids. Sulfasalazine was administered in two of the patients.
Other Key Points:
The authors noted that patients gradually transitioned to every 4 week therapy whild seeking to maintain trough concentrations >10 mcg/mL.
Infants have several risk factors for inadequate serum infliximab levels. Infliximab clearance is not linearly weight-related and infants are “most susceptible for under-dosing.”
Infliximab distribution in infants & children differs from adults with more peripheral compartment distribution, leading to lower trough levels.
Severity of disease impacts infliximab levels and can cause a ‘sink’ effect
The authors note that higher doses may increase adverse events, including infections
My take: This study shows that highly-selected patients may need both accelerated and higher doses of infliximab to enable response. It adds to the literature that children, in general, are at high risk of under-dosing with ‘standard’ infliximab dosing.
The current administration has supported legislation which would repeal or sharply curtail many of the Affordable Care Act’s (ACA’s) coverage provisions and is “asking the U.S. Supreme Court to strike down the entire ACA.” Their approach views “existing federal coverage programs, particularly those serving lower-income people, [as] too expansive.”
The main alternative approach aims for expanded insurance coverage and deep subsidies to cover low- and moderate-income individuals.
Areas of potential agreement include encouraging competition to lower costs as well as making prices more transparent to encourage patients to seek out lower-priced alternatives.
My take: Overall, I favor more expansive health care coverage.
Methods: In this 24-week, randomized, double-blind, placebo-controlled trial with pediatric patients (n=157) with heterozygous familial hypercholesterolemia, patients 10 to 17 years of age were treated with evolocumab. All had been receiving lipid-lowering treatment before screening and had LDL cholesterol level of 130 mg/dL.
Key finding: At week 24, the mean percent change from baseline in LDL cholesterol level was −44.5% in the evolocumab group and −6.2% in the placebo group.
My take: Long-term data are needed. However, in high risk patients who have not responded to other intensive treatment, evolocumab may be worthwhile.
Methods: We used nationwide Swedish demographic and health registers to follow an open population of 1,672,983 girls and women who were 10 to 30 years of age from 2006 through 2017.
After adjustment for all covariates, the incidence rate ratio was 0.12 (95% CI, 0.00 to 0.34) among women who had been vaccinated before the age of 17 years and 0.47 (95% CI, 0.27 to 0.75) among women who had been vaccinated at the age of 17 to 30 years.
My take: HPV vaccine (aka ‘Cervical Cancer Vaccine’) may lower the risk of cancer by 88% in those vaccinated before the age of 17 years.
Phthalates have been used for many years to make plastics softer and more flexible. These plastics are so common that more than 95 percent of all people have detectible levels of phthalates in their urine. They can be found in everything from perfumes and shampoos to food packaging, detergents, vinyl flooring and shower-curtains.
These chemicals act like hormones, which in turn can disrupt the function of natural hormones, which can increase diabetes risk and interfere with male genital development.
These chemicals also are considered “obesogens,” which means they contribute to the risk of obesity. For these reasons, several types of phthalates have been banned from use in baby toys and teething rings since 2009, but they can still be found in many consumer products.
To avoid exposures, some tips include the following:
Minimize plastics used for food storage and avoid heating food in plastic. Use glass, ceramic and stainless steel containers when possible.
Minimize use of other plastic products with the recycling code numbers 3 and 7. Those coded 1, 2 or 5 are phthalate-free.
Increase consumption of fruits and vegetables, foods more frequently that are known to contain “phytoestrogens”.
My take: Environmental research is quite difficult. Yet, we know that changes in our environmental exposures are directly related to many adverse health outcomes since changes in disease frequencies related to genetics is a much slower process.
Methods: “We conducted a national, prospective multi-centre IBD inception cohort study, including 1399 children. Diagnostic delay was defined as time from symptom onset to diagnosis >75 th percentile.”
In CD, diagnostic delay was associated with a 2.5-times higher rate of strictures/internal fistulae (HR 2.53, 95% CI 1.41-4.56)
Every additional month of diagnostic delay was associated with a decrease in height-for-age z-score of 0.13 standard deviations
Diagnostic delay was more common in CD, particularly small bowel CD
My take: Delays in diagnosis in this study were associated with stricturing/internal fistulising complications and growth impairment in paediatric CD. It is likely that inadequate treatment would increase the risk of these problems as well.
Surgical options include Ileal pouch–anal anastomosis (IPAA), rectal-sparing colectomy with end ileostomy (RCEI), and ileorectal anastomosis (IRA). Conclusions based on “a patient-level state transition microsimulation in TreeAge Pro:”… “Despite an increased risk of infertility, our model results suggest that IPAA may be the optimal surgical strategy for female UC patients aged 20–30 years who desire children. For patients aged 35 years, RCEI should additionally be considered, as QALYs for RCEI and IPAA were similar.” In older age group, RCEI’s increase rate of childbirth (28%), decrease time to childbirth (14 months) and 77% reduction in IVF are important factors.
In this retrospective study with 145 patients, the overall cure rate of CDI after FMT was 80.0%, without CDI recurrence at median follow-up of 9.3 (range, 0.1–51) months. The authors concluded that “fecal microbiota transplantation effectively treats recurrent CDI in IBD patients but has no apparent beneficial effect on the IBD course.”