Challenging Assumptions: Self-Management Adolescent Skills and Poor Outcomes

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If you think that teaching more self-management to adolescents will lead to better outcomes, you might be wrong.  A recent study (RA Annunziato et al. J Pediatr 2018; 193: 128-33) shows that adolescents who reported greater self-management, following liver transplantation, had worse outcomes.

In this study of 9-17 year olds and their parents (213 dyads), the key finding was based on a score derived from the REFILS survey.  REFILS is an acronym for “Responsibility and Familiarity with Illness Survey.”  This survey was curtailed from 22 items to the following 13 items:

  • Understands key aspects of liver disease
  • Discusses management plan with team
  • Self-manages liver regimen
  • Knows names/dose of medications
  • Keeps track of medications
  • Correctly takes medications
  • Calls pharmacy for refills
  • Knows different types of providers
  • Knows date of next appointment
  • Makes appointments
  • Know insurance details
  • Understands insurance plan
  • Keeps healthcare records

Key finding:

  • “Negative outcomes were more likely to occur if patients reported that they are ‘in charge.’ A higher [REFILS] score, which denotes a higher level of (self-reported) management, was significantly and consistently correlated with worse adherence and organ rejection.”

The implication is that the transition of responsibilities from the parent/caregiver to the adolescent “may in fact not always be indicated or advisable…education about self-care might actually be harming patients…It is probably prudent to discourage rather than encourage adolescents from assuming self-care in some cases.”

My take: While adolescents and young adults are capable in many aspects, there are hardly any that I would trust to care for our dog (see below) for any protracted period.  Thus, in my view, without close parental supervision, entrusting the life of a liver transplant recipient to an adolescent is risky.

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Charlie

How Successful is Liver Transplantation for Fatty Liver Disease?

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A recent guideline update (ZM Younossi. Liver Transplantation 2018; 24: 166-70) provides some useful information about nonalcoholic fatty liver disease (NAFLD), nonalcoholic steatohepatitis (NASH), and liver transplantation (LT).

Key points:

  • “Despite metabolic comorbidities, posttransplant outcomes of NASH patients are generally good.  In fact, 1-, 3-, and 5-year patient and graft survival rates are …similar to other liver diseases.”
  • NASH/NAFLD can recur following LT…”NASH with significant fibrosis (stage ≥2) occurs in approximately 5% of recipients by 5 years after transplantation.”
  • Additional issues to manage after LT, include weight management, and metabolic conditions including diabetes, hypertension, dyslipidemia, and hypertension.  All of these conditions can be affected by specific immunosuppressants.  For example, calcineurin inhibitors and corticosteroids can exacerbate type 2 diabetes mellitus.

My take: This article indicates better LT outcomes than I expected in patients with NASH/NAFLD.

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Bright Angel Trail

PFAPA Conference Report

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A conference report on periodic fever, aphthous stomatitis, pharyngitis, adenitis syndrome (PFAPA): L Harel et al. J Pediatr 2018; 193: 265-74

This report reviews PFAPA along with other fever syndromes.

Table II reviews several published criteria.  Most of these include abrupt onset of fever, duration of symptoms <5 days, presence of constitutional symptoms, exclusion of cyclic neutropenia, presence of  aphthous stomatitis, pharyngitis, cervical adenitis, presence of asymptomatic intervals, normal growth.

  • The authors note that ~25% of patients are >5 years of age.
  • They note that it is important to exclude exudative tonsillitis.
  • They suggest NOT testing for familial Mediterranean fever (FMF) in the absence of clinical suspicion. The pain symptoms with FMF are much more intense and  consistent with a peritonitis.
  • They recommend checking acute phase reactants between attacks to assure normalization
  • Corticosteroids (single dose) have been shown to shorter course.  “The recommended full dose is 2 mg/kg prednisone or 0.3 mg/kg betamethasone.”
  • “It is our practice to conclude the following: 1. Fever recurring the next day [after steroids]–not a PFAPA episode, 2. fever recurring withing 2-4 days –the corticosteroid dose is too low, and 2. attack recurs >1 week –new episode.”
  • Any of the following should exclude PFAPA: “neutropenia, cough, coryza, severe abdominal pain, significant diarrhea, rash, arthritis, or neurologic abnormalities; elevated acute phase reactants between attacks”

Differential diagnosis and characteristics are reviewed in Figure 5, with emphasis on mevalonate kinase deficiency, FMF, cryopyrin-associated periodic syndromes (CAPS), and tumor necrosis factor receptor-associated periodic syndrome (TRAPS).

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Disclaimer: These blog posts are for educational purposes only. Specific dosing of medications/diets (along with potential adverse effects) should be confirmed by prescribing physician/nutritionist.  This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.

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Hepatitis C Reactivation with Chemotherapy

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There are a lot of reports describing the potential of adverse outcomes due to hepatitis B reactivation with chemotherapy as well as with treatment of hepatitis C; in addition, there are recommendations to prevent this occurrence (see below). With hepatitis C virus (HCV), the issue of reactivation has not garnered the same type of concern.  A recent study (HA Torres et al. Hepatology 2018; 67: 36-47) indicates that HCV can reactivate with chemotherapy, though this may not result in adverse outcomes. The authors prospectively followed HCV-infected patients receiving cancer therapy from 2012-16.  Reactivation was defined as HCV RNA increase >1 log over baseline and hepatic flare as an increase in ALT >3 times ULN.

Key finding:

  • “Reactivation occurred in 23 (23%)…No patient with reactivation experienced liver failure or liver-related death within 36 weeks after initiation of cancer treatment…most had an unremarkable clinical course.”

Related article: M Persico et al. Hepatology 2018; 67: 48-55.  In the Persico study, the authors examined the association of HCV with non-Hodgkin’s lymphoma. In this observational study, all patients underwent antiviral therapy with sofosbuvir/ledipasvir and chemotherapy.  Compared to a historical control group, the antiviral treatment group had similar overall survival but a significantly higher disease-free survival after 52 weeks.  Thus, the authors note that antiviral treatment combined with chemotherapy, “was shown to be safe and effective in influencing remission of aggressive lymphomas in HCV patients.”

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Preterm Infants with Increased Infections Following Acid Suppression Therapy

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A recent study (P Manzoni et al. J Pediatr 2018; 193: 62-7) provide more data on the detrimental effects of gastric acid inhibitors (eg. proton pump inhibitors, histamine-2 receptor antagonists).  This study was a secondary analysis using prospectively collected data from 235 preterm very low birth weight infants. Key findings:

  • “After multivariate analysis, exposure to inhibitors of gastric acidity remained significantly and independently associated with LOS [late-onset sepsis] (OR 1.03); each day of inhibitors of gastric acidity exposure conferred an additional 3.7% odds of developing LOS.”
  • Acid suppression therapy was associated with gram-negative (P<.001) and fungal pathogens (P=.001)
  • The study showed an association between acid blockers and with necrotizing enterocolitis, which was mitigated in those who received bovine lactoferrin

My take (borrowed, in part, from authors): This data “confirm, strengthen, and expand on previous reports describing an association between inhibitors of gastric acidity and infections.”  Thus, the risks of these medications is likely greater than the benefits in the majority of preterm infants.

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Bright Angel Trail

Briefly Noted: Arsenic Levels with GFD, Cellphones, and Enuresis Outcomes

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This post has a couple interesting items:

  1. Arsenic levels were not increased in individuals with celiac disease who were consuming a gluten-free diet
  2. Cellphones: There are good reasons for physicians to avoid giving out their cellphone numbers to patients
  3. Enuresis -most patients respond to bedwetting alarms

RD Watkins et al. Practical Gastroenterology; 2018; 42: 12-6.  In this retrospective review of 39 patients (with available arsenic levels), patients with celiac disease (adult & pediatric) had normal and/or undetectable arsenic levels.  The mean duration on a gluten-free diet was 2.35 years for pediatric patients and 3.31 years for adults.

33 Charts/Bryan Vartabedian: Should Physicians Give Their Cell Phone Numbers to Patients

E Apos et al. J Pediatr 2018; 193: 211-6.  This study showed that enuresis treatment with a bedwetting alarm system was effective in 76% of patients (n=2861) and that mean treatment time to achieve dryness was 62 days. The most frequent age group was 6 years to 10 years of age.

 

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NY Times: A Doctor’s Guide to A Good Appointment

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NY Times: A Doctor’s Guide to A Good Appointment

An excerpt:

[Choosing a doctor], You can glance at these online ratings sites, but be sure to take them with an enormous grain of salt…I recommend looking for:

  • A doctor who takes his or her time talking with you, as opposed to making you feel like you’re at a drive-through fast-food joint. 
  • A doctor who engages his or her patients in decision-making, as opposed to simply rattling off a to-do list. 
  • A doctor who you can get in touch with on the phone or through secure email.

You should also check with your insurance company — find out which doctors are in network and conveniently located. ..

If you are looking for a specialist to do a particular procedure (like hip replacement, cataract surgery, a CT-guided biopsy or heart valve surgery), look for a physician who does lots of them…

Timing: If you can schedule yourself to be the first or second visit of the day, you’ll have a better chance at being seen at your scheduled time. Don’t plan your visit when you have to something critical right afterward. 

My take: This is a useful commentary.  It also makes recommendations on finding out how much it will cost (sometimes by calling your insurance company).  Other points I would make:

  • Bring important information with you, like current medications (name, and dose or just bring the prescription container itself), previous test results and growth information
  • Bring a [short] list of questions
  • If you have a flexible schedule, in addition to the first appointments of the day, often the first appointment after lunch has a shorter wait time, particularly for physicians who tend to run late on appointments

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Why Does Primary Sclerosing Cholangitis Increase the Risk of Colorectal Cancer in Ulcerative Colitis?

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A recent retrospective study (Clin Gastroenterol Hepatol 2018; 16: 68-74) compared adult patients who had ulcerative colitis (UC) with (n=23) and without primary sclerosing cholangitis (n=120) (PSC). All patients had pancolitis and were in clinical remission.

Key finding:

  • Patients with UC-PSC had more subclinical endoscopic activity (odds ratio (OR) 4.21) and histologic activity (OR 5.13) in the right colon compared with patients without PSC

It is known that the presence of PSC is a risk factor for colorectal cancer (CRC).  A previous meta-analysis (RM Soetiknno et al. Gastrointest Endosc 2002; 56: 48-54) described a OR of CRC of 4.09.

My take: This study shows that UC patients with PSC who are in clinical remission have a greater degree of endoscopic and histologic inflammation in the proximal colon compared to patients without PSC.  This increased inflammation is a likely factor in the increased risk for CRC.

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Another Day in the US: School Deaths Related to Firearms

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Between 2001-2013, gun related deaths exceeded the total number of deaths from AIDS, terrorism, war, and illegal drug overdoses combined (according to Vox -see Firearm Mortality in U.S).  Here are some tweets in reaction to yesterday’s tragic events.

Link to The Onion commentary: ‘No Way To Prevent This’

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