Featured Research

from universities, journals, and other organizations

Measuring quality of life for rare blood condition

Date:
November 4, 2013
Source:
Children's Hospital of Eastern Ontario Research Institute
Summary:
Quality of life is moving from a research tool, where studies are done to show that one drug is better than another drug, and evolving into something that practitioners will use to optimize individual patient care.

A CHEO-led multi-site North American study, headed by Dr. Robert Klaassen, lead investigator at CHEO and associate professor in the University of Ottawa's Department of Pediatrics, has confirmed the validity and reliability of a quality of life measurement tool for children and adults with thalassemia major. The tool was created between 2006 and 2009 through the combined efforts of CHEO, the Hospital for SickKids and Laurentian University.

Symptoms of thalassemia major, a rare genetic condition, include severe anemia in the first year of life, chronic fatigue and failure to thrive. The only cure is bone marrow transplantation. Unfortunately, this option is available only to a minority of patients.

Patients with this blood condition receive multiple red cell transfusions in any given year, which inevitably leads to iron overload, as the body has no natural way to get rid of iron. However, pharmaceutical companies are creating therapies to treat this condition. While in the past, medication was commonly administered by a needle in the arm for 10 hours every night, advances in medicine have introduced oral agents. All treatments are expensive and have side effects.

What interested the research team, whose findings were published today in the British Journal of Hematology, was the overall quality of life for these patients over the long term."Quality of life is moving from a research tool, where studies are done to show that one drug is better than another drug, and it's evolving into something that practitioners will use to optimize individual patient care," said Klaassen. "The future of health care will incorporate quality of life surveys into electronic patient records, so physicians and allied health care professionals can build a care plan around a patient's physical symptoms, emotional state, support networks, environmental restrictions and so on."

The disease-specific quality of life measurement tool is called TranQol (transfusion quality of life). It includes four sub-domains for a pediatric population, including physical domain, emotional domain, social domain and school/career domain. The research team took three years to build the tool, and conducted almost four years of reliability and validation testing acrossNorth America. It performed over 100 interviews with health care professionals with expertise in thalassemia, patients, adults, children and parents. The validation and reliability results are based on self-reporting by patients.

"There is a trend happening now: pharmaceutical companies are chasing rare disorders because there is less competition and a faster, higher potential impact," says Klaassen. "For the first time in 40 years, the hematology field is exploding -- and our evidence-based measurement tool is going to be key to understand what, how and why different therapies work, or don't."


Story Source:

The above story is based on materials provided by Children's Hospital of Eastern Ontario Research Institute. Note: Materials may be edited for content and length.


Journal Reference:

  1. Robert J. Klaassen, Nicholas Barrowman, Manuela Merelles-Pulcini, Elliott P. Vichinsky, Nancy Sweeters, Melanie Kirby-Allen, Ellis J. Neufeld, Janet L. Kwiatkowski, John Wu, Linda Vickars, Victor S. Blanchette, Melissa Forgie, Robert Yamashita, Durhane Wong-Rieger, Nancy L. Young. Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major. British Journal of Haematology, 2013; DOI: 10.1111/bjh.12631

Cite This Page:

Children's Hospital of Eastern Ontario Research Institute. "Measuring quality of life for rare blood condition." ScienceDaily. ScienceDaily, 4 November 2013. <www.sciencedaily.com/releases/2013/11/131104095537.htm>.
Children's Hospital of Eastern Ontario Research Institute. (2013, November 4). Measuring quality of life for rare blood condition. ScienceDaily. Retrieved September 19, 2014 from www.sciencedaily.com/releases/2013/11/131104095537.htm
Children's Hospital of Eastern Ontario Research Institute. "Measuring quality of life for rare blood condition." ScienceDaily. www.sciencedaily.com/releases/2013/11/131104095537.htm (accessed September 19, 2014).

Share This



More Health & Medicine News

Friday, September 19, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

The Cost of Ebola

The Cost of Ebola

Reuters - Business Video Online (Sep. 18, 2014) As Sierra Leone prepares for a three-day "lockdown" in its latest bid to stem the spread of Ebola, Ciara Lee looks at the financial implications of fighting the largest ever outbreak of the disease. Video provided by Reuters
Powered by NewsLook.com
What HealthKit Bug Means For Your iOS Fitness Apps

What HealthKit Bug Means For Your iOS Fitness Apps

Newsy (Sep. 18, 2014) Apple has delayed the launch of the HealthKit app platform, citing a bug. Video provided by Newsy
Powered by NewsLook.com
U.S. Food Makers Surpass Calorie-Cutting Pledge

U.S. Food Makers Surpass Calorie-Cutting Pledge

Newsy (Sep. 18, 2014) Sixteen large food and beverage companies in the United States that committed to cut calories in their products far surpassed their target. Video provided by Newsy
Powered by NewsLook.com
Residents Vaccinated as Haiti Fights Cholera Epidemic

Residents Vaccinated as Haiti Fights Cholera Epidemic

AFP (Sep. 18, 2014) Haitians receive the second dose of the vaccine against cholera as part of the UN's vaccination campaign. Duration: 00:34 Video provided by AFP
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

Environment News

Technology News



Save/Print:
Share:

Free Subscriptions


Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

Get Social & Mobile


Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

Have Feedback?


Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
Mobile: iPhone Android Web
Follow: Facebook Twitter Google+
Subscribe: RSS Feeds Email Newsletters
Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins