Navigation Links
New tool helps young adults with sickle cell disease in the transition to adult care
Date:3/31/2014

(Boston) Child and adolescent hematologists at Boston Medical Center (BMC) have developed a tool to gauge how ready young adults with sickle cell disease are for a transition into adult care. In a new article for the Journal of Pediatric Hematology/Oncology, Amy Sobota, MD, MPH, and her collaborators have shown that a questionnaire geared to the needs of young adults with sickle cell disease can pinpoint areas of need before the patient goes into an adult clinic.

BMC's sickle cell disease transition clinic, which is unique in Boston, was established in 2008 and serves approximately 45 patients.

Sickle cell disease is a hemoglobin disorder, the molecule in red blood cells that carries oxygen to the tissues. Due to a genetic mutation, sickle cell patients make red blood cells that are shaped like a crescent or "sickle." These patients are often anemic and can get bouts of extreme pain when sickled red blood cells become caught in small vessels of the body. Sickle cell disease traditionally has had a high mortality rate; however, children with sickle cell disease are now living longer, healthier lives thanks to early diagnosis and effective treatment.

These welcome changes have given new importance to the young patient's point of transition into adult care.

Previous studies have shown that patients with SCD who are transitioning from pediatric to adult care have more admissions and emergency department visits. "We saw that these patients had specific needs, and that is why we started the transition clinic at BMC," said Sobota, who is an attending in pediatric hematology/oncology at BMC and an assistant professor of pediatrics at Boston University School of Medicine.

To determine the tool's efficacy, the researchers looked at the answers provided by 33 patients between the ages of 18 and 22 who completed the assessment. A majority, 97 percent, of the respondents said they could explain sickle cell disease to another person and that they understood "how they got" the genetic disease, and 94 percent understood that sickle cell disease might be passed on to their children.

All of the patients said that they planned to attend college or obtain post-high-school training, but only 70 percent knew where to find information about job training and opportunities. Sixty four percent of transitioning patients said they understood the various types of health insurance available to them, but only 13 percent had drawn up a portable medical history form that they could give to adult healthcare providers. Encouragingly, 97 percent of young sickle cell patients claimed a good social support system.

Finally, patients were asked about their ability to manage independent living and 73 percent of the patients had some job experience, full- or part-time. Although all of the patients were 18 and over, only 79 percent said they were already going to doctor's appointments on their own. However, few mentioned that they had anxiety about transitioning to adult care.

"Our study indicates that this assessment tool the only one of its kind provides important information to physicians of patients with sickle cell disease who are transitioning from pediatric to adult care," said Sobota. "Caregivers can use this information from patients in order to effectively tailor and guide their treatment and education through this transition."


'/>"/>
Contact: Jenny Eriksen Leary
jenny.eriksen@bmc.org
617-638-6841
Boston University Medical Center
Source:Eurekalert

Related medicine news :

1. Anti-clotting agent helps reduce the incidence and impact of stent thrombosis during PCI
2. Treatment helps reduce risk of esophagus disorder progressing to cancer
3. Einstein helps establish $28 million consortium to find ebola treatment
4. Tequila plant is possible sweetener for diabetics -- helps reduce blood sugar, weight
5. Early detection helps manage a chronic graft-vs.-host disease complication
6. Tissue repair drug helps heal diabetic foot ulcers
7. Recycling of chauffeur protein helps regulate fat production
8. NIH scientists find mechanism that helps HIV evade antibodies, stabilize key proteins
9. Social Network Helps Dieters Lose Weight Socially and Earn Money
10. Daily Multivitamin Without Iron Available on Amazon From EverSun Health Helps People Fight Sickness During Flu Season
11. Workout Finishers Review – How Workout Finishers Helps People To Get A Fit Shape – Vinaf.com
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/28/2017)... ... June 28, 2017 , ... Canadian Zeolite Corp. ... a two year study conducted by the University of Saskatchewan in partnership with ... remediating potash brine-impacted groundwater. As a part of the study, batch adsorption experiments ...
(Date:6/28/2017)... ... June 28, 2017 , ... ... servicing communities throughout the greater Cincinnati metropolitan area, is teaming up with the ... for families with children receiving treatment in nearby hospitals. , Ronald McDonald House ...
(Date:6/27/2017)... (PRWEB) , ... June 27, 2017 , ... Harbour ... manage token assets on the Ethereum blockchain, has released their technical specifications . ... now, there has been little systematic approach for determining which offerings will garner the ...
(Date:6/27/2017)... ... June 27, 2017 , ... From June 20-22, EarQ ... was held in Syracuse, New York, where EarQ is headquartered. , Together, the ... to connect with today’s savvy consumer, and the latest in hearing technology. At ...
(Date:6/27/2017)... (PRWEB) , ... June 27, 2017 , ... ... experts to contribute to an upcoming case studies guidebook. This guidebook offers an ... , This book will include articles, case studies and how-to’s that fall into ...
Breaking Medicine News(10 mins):
(Date:5/30/2017)... CHICAGO , May 30, 2017 Hill-Rom Holdings, ... th Annual Global Healthcare Conference on Tuesday, June 13, ... John Greisch , Hill-Rom,s president and chief executive officer, ... The live audio webcast can be accessed at ... after conclusion of the live event through September 13, 2017. ...
(Date:5/29/2017)... TEL AVIV, Israel, May 29, 2017  Cellect Biotechnology ... of innovative technology which enables the functional selection of ... financial results for the first quarter ended March 31 ... pleased with our accomplishments in the first quarter of ... the first quarter, we announced the treatment of the ...
(Date:5/26/2017)... , May 25, 2017  In response to ... , Direct Relief is working with Pfizer to ... available at no cost to community health centers, free ... providers nationwide. "Pfizer has a long-standing ... medicines and ensuring patient safety through educational activities," said ...
Breaking Medicine Technology: