Author: Tom Ulrich

5 tips for helping a child with needle phobia

child teddy bear blood draw needle phobia

Many children are afraid of needles to varying degrees, and may become anxious in the days leading up to a medical visit or take longer to get shots or blood draws because of their fear. For some, that fear can reach the point of interfering with their medical care.

On our sister blog Thriving, child psychologist Carolyn Snell, PhD, of Boston Children’s Hospital’s Medical Coping Clinic shares five tips for families that can help them prepare their child for blood draws and other procedures requiring needle sticks. She also shares suggestions for approaching situations where a child’s needle phobia is so great that it delays necessary care.

Do you care for children with needle phobia? Consider sharing Snell’s tips with their families or caregivers.

Five things to know about microcephaly and Zika

microcephaly Zika
(Catherine Delphia)

The rapid spread of Zika virus and its association with cases of microcephaly have raised alarm across the Americas, such that the World Health Organization has declared a global public health emergency.

Notes spoke to Ganeshwaran Mochida, MD, of the Boston Children’s Hospital Department of Neurology, who specializes in in microcephaly care, about the virus and microcephaly. He raised five points about microcephaly for both providers and their patients to consider. …Read More

Is the time right for pediatric precision cancer medicine?

precision cancer medicine personalized medicine pediatric oncology childhood tumors Vector
What is precision cancer medicine all about? See the full infographic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

Precision cancer medicine — an approach in which doctors treat a tumor based on its genetic profile, rather than where it is — has benefited a growing number of adults with cancer. It’s not yet a standard approach in pediatric oncology, but the times may be a-changing.

Our sister blog Vector reports on the results of the Individualized CAncer Therapy (iCat) trial, a four-center study led by Katherine Janeway, MD, PhD, clinical director of the Solid Tumor Center at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, that investigated the feasibility of clinical sequencing and precision medicine in patients with relapsed or refractory pediatric solid tumors. In 43 out of the study’s 100 participants, the iCat investigators made genetic findings suggesting a new treatment approach, a new diagnosis and/or a genetic predisposition to cancer.

The study joins a growing body of evidence in favor of incorporating sequencing into pediatric oncology care, at least among children with relapsed tumors.

“There’s a lot more going on than any one study would suggest,” Janeway says. “Every study, every paper is all part of one big story about bringing precision medicine to children with cancers.”

Read more about the iCat study on Vector. And visit the Thriving blog to read about a young patient who is now a brain tumor survivor thanks to precision cancer medicine.

The data are there. Let patients have them. Here’s why.

patient health data electronic medical record patient-controlled health records

Twenty-two years ago, MIT computer scientist Peter Szolovits put forward the idea of creating online repositories where patients could bring all of their health data and manage who can access it. Since then, the health IT industry has made a couple of attempts to create such patient-controlled health records (PCHRs; think Google Health and Microsoft HealthVault).

In reality, patients are no closer now to having direct access to and control over their health data than they were in 1994. But maybe now the time is right. What the health care system has finally achieved, Kenneth Mandl, MD, MPH, and Isaac Kohane, MD, PhD, of Boston Children’s Hospital and Harvard Medical School (HMS), say in The New England Journal of Medicine (NEJM), is the critical mass of supply and demand that should help get PCHRs off the ground:

  • With widespread adoption of electronic medical record (EMR) systems, at least some of any given patient’s data are likely available electronically, albeit locked up within individual institutions.
  • Patients want to be able to manage their health information.
  • Providers, developers and researchers are calling for access to those data.

So what more, Mandl and Kohane ask, needs to be done? …Read More