Sickle cell patients who experience discrimination miss out on treatment

Study looks at reasons why patients do not adhere to available treatment

2014-09-09

(Press-News.org) Experiencing discrimination because of their race or health condition can influence just how much trust people put into the health profession. In fact, having these experiences was associated with a 53-percent increase in the chances that someone suffering from sickle cell disease will not follow their doctors' orders, says Carlton Haywood Jr. of the Berman Institute of Bioethics and the Johns Hopkins School of Medicine in the US. Haywood led a study appearing in The Journal of General Internal Medicine, published by Springer, into the experiences of how patients who suffer from this debilitating genetic disorder experience the healthcare system.

Sickle cell disease is a serious debilitating disorder that affects both a person's body and psyche. People who suffer from this hereditary condition experience acute and chronic pain, and are more susceptible to infections, strokes and neurological problems. As patients grow older, they also experience more organ- and tissue-related problems. Approximately 100,000 Americans have this condition, which can be detected by genetically screening newborn babies.

To ensure patients enjoy a better quality of life, those suffering from the disease should be able and willing to adhere to the small handful of medication and treatment options available to them. However, many reports show that such patients often do not do so. To scrutinize the reasons behind such non-adherence, Haywood's team monitored the experiences of 291 patients with sickle cell disease who were treated at two academic medical centers in the Baltimore/Washington D.C. metropolitan area. The results comprise part of the Improving Patient Outcomes with Respect and Trust (IMPORT) study.

In total, more than a third of the patients monitored said that they did not always follow doctors' orders. Haywood's team analyzed the results further, and found that 58 percent of the non-adherent group, compared to 43 percent of the adherent group, had at least one experience of being discriminated against based on their race or health status. The researchers also found that people who had previously experienced discrimination were 53 percent more likely to not always stick to their physician's recommendations.

The findings are consistent with previous studies among other chronically ill patient groups. These also show how discrimination affects a patient's trust in the healthcare system, and the person's subsequent willingness to follow prescribed treatment regimens.

Haywood believes the perceptions and experiences of being discriminated against may increase the chances of sickle cell patients not fully benefiting from the health care that is available to them.

"A good relationship between the patient and provider can facilitate adherence, while a problematic relationship can negatively impact patient adherence," says Haywood. "Improving relationships between healthcare providers and such patients may improve their trust in medical professionals, which in turn may improve other outcomes among this underserved patient population."

INFORMATION: Reference Haywood, C. et al (2014). Perceived Discrimination, Patient Trust, and Adherence to Medical Recommendations Among Persons with Sickle Cell Disease, The Journal of General Internal Medicine. DOI 10.1007/s11606-014-2986-7. The Journal of General Internal Medicine is the official journal of the Society of General Internal Medicine.

ELSE PRESS RELEASES FROM THIS DATE:

National Renewable Energy Laboratory updates cetane data used for development of energy efficient fuels and engines

2014-09-09

The Energy Department's National Renewable Energy Laboratory (NREL) has released a long-anticipated update to the source-of-record for cetane number data. This information is vital to the development of new, energy-efficient, low-carbon fuels and compatible engines. Researchers, as well as members of the engine, vehicle, and fuel industries, rely on these numbers to target compounds for development of new fuels capable of greater energy efficiency, cleaner emissions, and maximum performance in diesel engines. A cetane number is a relative ranking of fuels based on the ...

Penn study finds genetic mutations linked with ethnic disparities in cancer

2014-09-09

One of the goals of genome sequencing is to identify genetic mutations associated with increased susceptibility to disease. Yet by and large these discoveries have been made in people of European or Asian ancestry, resulting in an incomplete picture of global genetic variation in disease vulnerability. In a new study published in the journal BMC Medical Genomics, researchers at the University of Pennsylvania have addressed this omission. Their investigation identified more than 30 previously undescribed mutations in important regulatory molecules called microRNAs. Many ...

NASA sees Tropical Storm Fengshen looking more like a frontal system

2014-09-09

NASA's Terra satellite captured an image of Tropical Storm Fengshen as it continued moving away from the east coast of Japan. Satellite imagery showed that the storm resembled a frontal system more than a tropical storm because it appeared stretched from southwest to northeast NASA's Terra satellite flew over Tropical Storm Fengshen on Sept. 9 at 1:05 UTC (Sept. 8 at 9:05 p.m. EDT) and the Moderate Resolution Imaging Spectroradiometer or MODIS instrument captured an image of the massive storm. The MODIS image showed that the bulk of Fenghsen's clouds were north and northeast ...

The search for Ebola immune response targets

2014-09-09

The effort to develop therapeutics and a vaccine against the deadly Ebola virus disease (EVD) requires a complex understanding of the microorganism and its relationship within the host, especially the immune response. Adding to the challenge, EVD can be caused by any one of five known species within the genus Ebolavirus (EBOV), in the Filovirus family. Now, researchers at the La Jolla Institute for Allergy and Immunology (La Jolla Institute) and the San Diego Supercomputer Center (SDSC) at the University of California, San Diego are assisting the scientific community ...

'Solid' light could compute previously unsolvable problems

2014-09-09

Researchers at Princeton University have begun crystallizing light as part of an effort to answer fundamental questions about the physics of matter. The researchers are not shining light through crystal – they are transforming light into crystal. As part of an effort to develop exotic materials such as room-temperature superconductors, the researchers have locked together photons, the basic element of light, so that they become fixed in place. "It's something that we have never seen before," said Andrew Houck, an associate professor of electrical engineering and one ...

An evolutionary approach to epidemics

2014-09-09

An evolutionary analysis of public health data during a major disease outbreak, such as bird flu, E. coli contamination of food or the current Ebola outbreak could help the emergency services plan their response and contain the disease more effectively. Details are reported in the International Journal of Innovative Computing and Applications. Dehai Liu of the Dongbei University of Finance and Economics, in Dalian, Liaoning, China, and colleagues have used evolutionary game theory to examine the data associated with a major public health event - the emergence of a new ...

Squeezed quantum communication

2014-09-09

This news release is available in German. It could be difficult for the NSA to hack encrypted messages in the future – at least if a technology being investigated by scientists at the Max Planck Institute for the Science of Light in Erlangen and the University Erlangen-Nürnberg will be successful: quantum cryptography. The physicists are now laying the foundation to make this technique, which can already be used for the generation of secret keys, available for a wider range of applications. They are the first scientists to send a pulse of bright light in a particularly ...

First evidence for water ice clouds found outside solar system

2014-09-09

VIDEO: A team of scientists led by Carnegie's Jacqueline Faherty has discovered the first evidence of water ice clouds on an object outside of our own Solar System. Water ice clouds... Click here for more information. Washington, D.C.—A team of scientists led by Carnegie's Jacqueline Faherty has discovered the first evidence of water ice clouds on an object outside of our own Solar System. Water ice clouds exist on our own gas giant planets--Jupiter, Saturn, Uranus, and Neptune--but ...

Fires continue in Northern California

2014-09-09

Storms have been the major cause of the huge fires that California has been battling in its northern regions. A lightning strike from a storm on August 12, 2014 started the fires in the Happy Camp Complex. There are currently 99,200 acres affected and the fire complex is at 30% containment. At around 4pm PDT on September 08, the smoke inversion lifted and fire behavior significantly increased on the south and southeast sides of the fire with spotting distances of up to a mile. Multiple spot fires occurred across the Scott River from Swanson Gulch and McGuffy Creek. ...

High-stakes testing, lack of voice driving teachers out

2014-09-09

EAST LANSING, Mich. --- Contrary to popular opinion, unruly students are not driving out teachers in droves from America's urban school districts. Instead, teachers are quitting due to frustration with standardized testing, declining pay and benefits and lack of voice in what they teach. So finds a Michigan State University education scholar – and former high school teacher – in her latest research on teacher turnover, which costs the nation an estimated $2.2 billion a year. Alyssa Hadley Dunn, assistant professor of teacher education, conducted in-depth interviews ...

Sickle cell patients who experience discrimination miss out on treatment

ELSE PRESS RELEASES FROM THIS DATE:

LAST 30 PRESS RELEASES: