New study identifies quality measures for end-of-life care for children with cancer
2021-05-05
(Press-News.org) There is currently no consensus on what quality end-of-life care for children with cancer looks like, or how to measure and deliver it; however, investigators recently assembled an expert panel to help fill this void. In a study published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the panel endorsed 16 measures that cover different aspects of care that are important for children with cancer and their families.
"Measuring the quality of the care delivered is an essential part of ensuring high quality end-of-life care for all patients. Although there are numerous quality measures for end-of-life care for adults with cancer, there are zero for children with cancer," said lead author Emily Johnston, MD, MS, of the University of Alabama at Birmingham.
To address this, Dr. Johnston and her colleagues selected a panel of individuals with expertise in pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice care. The investigators provided the panel with information on 20 proposed measures derived from adult measures and from interviews with bereaved parents whose child died of cancer.
After the panel members scored each measure and participated in discussions, they endorsed a set of 16 measures that covered four distinct aspects of care: avoiding medically intensive care at end-of-life; helping families achieve the location of death preferred for their child; advancing hospital policies and procedures for end-of-life care; and expanding supportive services for the child, as well as for parents and siblings.
"This is the first study to identify quality measures for end-of-life care for children with cancer. Some of the measures are similar to those used in adults, like avoiding intubation at the end-of-life, but others are novel, such as assessing sibling needs at end-of-life," said Dr. Johnston. "Therefore, it is essential that we have quality measures specific for children with cancer."
The team noted that the measures need to be refined and validated with bereaved families before they can be applied as a tool to help standardize care. Once validated, these measures may be useful for determining the quality of end-of-life care that different programs provide and for identifying disparities. "For example, they will allow us to determine if Hispanic and Black children with cancer are receiving as high quality end-of-life care as non-Hispanic white children," Dr. Johnston explained. "Once we have identified groups that are at risk of receiving poor quality end-of-life care, we can develop targeted interventions to improve it."
An accompanying editorial notes that the study's results may have implications for improving end-of-life care for adults as well. "This is an exciting time when more research will emerge to move end-of-life care forward in a way that can serve all patients and families better," the authors of the editorial wrote.
INFORMATION:
Additional Information
NOTE: The information contained in this release is protected by copyright. Please include journal attribution in all coverage. A free abstract of this article will be available via the Cancer News Room upon online publication. For more information or to obtain a PDF of any study, please contact:
Dawn Peters +1 781-388-8408 (US)
newsroom@wiley.com
Follow us on Twitter @WileyNews
Full Citations:
"Quality measures for end-of-life care for children with cancer: A modified Delphi approach." Emily E. Johnston, Isaac Martinez, Joanne Wolfe, and Steven M. Asch. CANCER; Published Online: March 30, 2021 (DOI: 10.1002/cncr.33546).
URL Upon Publication: http://doi.wiley.com/10.1002/cncr.33546
"Adults are just big children: What we can learn about quality end-of-life care from pediatrics." Jori F. Bogetz and Abby R. Rosenberg. CANCER; Published Online: March 30, 2021 (DOI: 10.1002/cncr.33548).
URL Upon Publication: http://doi.wiley.com/10.1002/cncr.33548
Author Contact: Bob Shepard, UAB Public Relations Manager, at bshep@uab.edu or +1 205-410-0915.
About the Journal
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online.
Follow us on Twitter @JournalCancer
About Wiley
Wiley drives the world forward with research and education. Through publishing, platforms and services, we help students, researchers, universities, and corporations to achieve their goals in an ever-changing world. For more than 200 years, we have delivered consistent performance to all of our stakeholders. The Company's website can be accessed at http://www.wiley.com.
ELSE PRESS RELEASES FROM THIS DATE:
2021-05-05
Coded messages in invisible ink sound like something only found in espionage books, but in real life, they can have important security purposes. Yet, they can be cracked if their encryption is predictable. Now, researchers reporting in ACS Applied Materials & Interfaces have printed complexly encoded data with normal ink and a carbon nanoparticle-based invisible ink, requiring both UV light and a computer that has been taught the code to reveal the correct messages.
Even as electronic records advance, paper is still a common way to preserve data. Invisible ink can hide classified economic, commercial or military ...
2021-05-05
Marine scientists are calling on the EU to adopt a comprehensive plan to protect dolphins and porpoises from fisheries bycatch in European waters.
A team of conservation experts, including Newcastle University's Professor Per Berggren, highlight limitations in EU's efforts to address and mitigate bycatch. The scientists argue this infective response is a result of scattered and complicated management responsibility for the conservation of dolphins and porpoises in Europe, and from a lack of quantitative conservation objectives, including biological reference points ...
2021-05-05
Reflexes protect our bodies - for example when we pull our hand back from a hot stove. These protective mechanisms could also be useful for robots. In this interview, Prof. Sami Haddadin and Johannes Kühn of the Munich School of Robotics and Machine Intelligence (MSRM) of the Technical University of Munich (TUM) explain why giving test subjects a "slap on the hand" could lay the foundations for the robots of the future.
In your paper, published in Scientific Reports, you describe an experimental setup where people were actually slapped on the hand - to study their reflexes....
Kühn: Yes, you can put it that way. For our study, in cooperation with Imperial College London, the test ...
2021-05-05
Clothing, from tank tops to parkas, helps people adapt to temperatures outdoors. But you can only put on or take off so much of it, and fluctuations in weather can render what you are wearing entirely inadequate. In a new study in ACS' Nano Letters, researchers describe a high-tech alternative: a reversible textile they designed to trap warmth in the cold and reflect it during hot weather, all while generating small amounts of electricity.
Previous attempts to develop such sophisticated textiles for outdoor use have generally focused on either capturing thermal radiation or dispersing it. To integrate the two, Qiang Li, Min Qiu and colleagues made a ...
2021-05-05
More research is urgently needed into the impact that attending suicide events is having on paramedics and other first responders, a researcher at the University of Otago, New Zealand, says.
PhD student Renan Lyra, a psychologist by training, says a significant proportion of police officers, firefighters and paramedics will attend at least one suicide event in their careers, but there has been little research into the impact this has on their personal and professional lives and on their own suicide risk.
Mr Lyra has reviewed 25 research papers on the impact attending a suicide event has on those ...
2021-05-05
A curiously yellow star has caused astrophysicists to reevaluate what's possible within our universe.
Led by Northwestern University, the international team used NASA's Hubble Space Telescope to examine the massive star two-and-a-half years before it exploded into a supernova. At the end of their lives, cool, yellow stars are typically shrouded in hydrogen, which conceals the star's hot, blue interior. But this yellow star, located 35 million lightyears from Earth in the Virgo galaxy cluster, was mysteriously lacking this crucial hydrogen layer at the time of its explosion.
"We haven't seen this scenario before," said Northwestern's ...
2021-05-05
CATONSVILLE, MD, May 4, 2021 - Paid video streaming services on your television, smart phone or other devices are increasingly replacing traditional video entertainment platforms of cable, satellite and broadcast TV. The growth of these services, known in the industry as over-the-top (OTT) media services, may be accompanied by a rise in pirated content, particularly where access to those services may be restricted, a group of researchers has found.
The researchers studied the effects of the Netflix - one of the leading global companies in paid video streaming - and its growth in 40 Asian countries. They also studied one country where access to Netflix was restricted, which is where ...
2021-05-05
Carnegie Mellon University's He Lab is focusing on noninvasive neuroengineering solutions that not only provide diagnostic techniques, but also innovative treatment options. Their latest research has demonstrated that noninvasive neuromodulation via low-intensity ultrasound can have cell-type selectivity in manipulating neurons.
Parkinson's Disease, epilepsy and insomnia are just a few of the neurological disorders that use neuromodulation treatment techniques today. Neuromodulation delivers controlled physical energy to the nervous system to treat and improve patients' quality of life. Current neuromodulation approaches, while effective, bring both drawbacks and limitations.
"Deep ...
2021-05-05
When light hits certain molecules, it dislodges electrons that then move from one location to another, creating areas of positive and negative charge. This "charge transfer" is highly important in many areas of chemistry, in biological processes like photosynthesis and in technologies like semiconductor devices and solar cells.
Even though theories have been developed to explain and predict how charge transfer works, they have been validated only indirectly because of the difficulty of observing how a molecule's structure responds to charge movements with the ...
2021-05-05
Researchers from the UCLA School of Dentistry have discovered a key molecule that allows cancer stem cells to bypass the body's natural immune defenses, spurring the growth and spread of head and neck squamous cell cancers. Their study, conducted in mice, also demonstrates that inhibiting this molecule derails cancer progression and helps eliminate these stem cells.
Published in the journal Cell Stem Cell, the findings could help pave the way for more effective targeted treatments for this highly invasive type of cancer, which is characterized by frequent resistance to therapies, rapid metastasis and a ...
LAST 30 PRESS RELEASES:
[Press-News.org] New study identifies quality measures for end-of-life care for children with cancer
