Literature Review

Palliative care ‘ahead of the game’ in approaches to treating rare diseases Hospice News; by Holly Vossel; 10/9/24 Researchers are ramping up efforts to better understand the complex trajectories of rare diseases, with evidence mounting around palliative care’s potential to improve outcomes among those patients. The Center for Innovation & Value Research recently launched the second phase of its Rare Disease Project, an initiative aimed at examining the diverse range of these illnesses and the patients impacted by them. The project is designed to learn more about the innovative, person-centered care models that can help address common challenges that these patients and their caregivers face — including approaches that integrate palliative care services. A pivotal point of the research for palliative care providers is understanding how their services help support patients — physically, practically and spiritually — as their diseases progress, according to Rick Chapman, chief science officer at the Center for Innovation & Value Research, which is part of the National Health Council.

City of Hope’s horizon: City of Hope gets $20M for pancreatic disease breakthroughs The Clinical Trial Vanguard; by Ferry Darma; 9/26/24 City of Hope, a leading cancer research and treatment institution, has received a $20 million donation from philanthropists Norman and Melinda Payson. This significant gift will establish a dedicated pancreas center to accelerate groundbreaking research and treatments for pancreatic cancer and diabetes. Inspired by the personal impact of pancreatic cancer on his mother, Norman Payson, a noted healthcare executive and City of Hope board director, expressed confidence in the organization’s capabilities. “City of Hope possesses the unique expertise to drive innovative cures for pancreatic cancer and diabetes,” he stated. “We are committed to advancing this research and bringing hope to countless individuals.”  ... The Paysons’ gift follows a historic $150 million donation from A. Emmet Stephenson Jr. and Tessa Stephenson Brand to fund pancreatic cancer research.

Family members' health can suffer when relative has cancer: Study Becker's Hospital Review; by Elizabeth Gregerson; 9/13/24 Individuals are at an increased risk of cardiovascular disease and psychological illness after a family member is diagnosed with cancer, according to a study published Sept. 9 in Cancer. Researchers from institutions across the U.S. analyzed data of patients diagnosed with genitourinary cancer between 1990 and 2015 who had first-degree relatives or spouses, from the Utah Population Database. The cohort of 49,284 patients and 77,938 relatives was matched with a similar control group and followed up within one-, three- and five-year periods. Among patients with genitourinary cancer, their family members had a "10% increased risk of developing a psychological illness and a 28% increased risk of developing cardiovascular disease" one year after diagnosis, according to the study. "This study provides population-level evidence to support the hypothesis that cancer diagnoses will lead to adverse health outcomes for family members of patients with cancer," the study authors wrote.

Too Much, Too Little, Just Right: Optimizing cancer care for older adults The ASCO Post, American Society of Clinical Oncology; by Ramy Sedhom, MD; Bobby Green, MD; and Julia  Frydman, MD, MS; 9/10/24 Imagine walking into a fancy restaurant only to find a menu consisting mostly of kids’ dishes. It would make no sense. Just 25% of restaurant diners are younger than age 12, and they rarely write Yelp reviews. But when it comes to cancer treatment, this is not very far from what we do. The median age for a new cancer diagnosis is 67, and among those who die of cancer each year, 73% are older adults. Yet just one in four clinical trial participants is aged 70 or older. Consequently, guidelines for most new cancer therapies are based on a median age that is significantly younger than the patient population who actually receives these therapies. That’s quite a conundrum. More than half of patients older than age 65 experience toxicity of grade 3 or worse while undergoing standard chemotherapy. ... Palliative Care—For a 40-year-old mother of two young children, the goal of cancer treatment is usually clear: complete remission and long-term survival. But when you ask older patients with cancer about their priorities, a majority regard symptom control, emotional coping, and other quality-of-life measures at least as much as longevity and sometimes more.

The dangers of healthcare generative AI 'drift' Becker's Health IT; by Giles Bruce; 8/15/24 IT leaders are embracing generative AI in healthcare but also expressing concerns that the technology can "drift." The performance of GPT-4, the large language model that powers ChatGPT, in answering healthcare questions can change over time, a phenomenon known as "drift," according to a study by researchers at Somerville, Mass.-based Mass General Brigham. Their work was published Aug. 8 in NEJM AI. "Generative AI performed relatively well, but more improvement is needed for most use cases," said corresponding author Sandy Aronson, executive director of IT and AI solutions at Mass General Brigham Personalized Medicine, in an Aug. 13 statement. "However, as we ran our tests repeatedly, we observed a phenomenon we deemed important: running the same test dataset repeatedly produced different results." ... The variability of the results could differ across days, so the authors say the AI's performance needs to be continuously monitored. 

Dr. El-Jawahri on the impact of palliative care on end-of-life care for AML and MDS OncLive; by Areej R. El-Jawahri, MD; 8/12/24 Areej El-Jawahri, MD, associate director, Cancer Outcomes Research and Education Program, director, Bone Marrow Transplant Survivorship Program, associate professor, medicine, Massachusetts General Hospital, discusses findings from a multi-site, randomized trial (NCT03310918) investigating a collaborative palliative oncology care model for patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) receiving nonintensive therapy at 2 tertiary care academic hospitals. Patients in the study who received the palliative care interventions had a median of 41 days from end-of-life care discussions to death, compared with 1.5 days in the standard care group (P < .001). Additionally, patients who received the palliative care interventions were more likely to articulate their end-of-life care preferences and have these preferences documented in electronic health records, El-Jawahri begins. This documentation correlated with fewer hospitalizations in the final 30 days of life, she notes. Furthermore, palliative care recipients experienced QOL improvements and a trend toward reduced anxiety symptoms vs the patients who received usual care, El-Jawahri says. These findings underscore the necessity of integrating palliative care as a standard of care for patients with AML and high-risk MDS, El-Jawahri emphasizes.

Exhausted by prior auth, many patients abandon care: AMA survey AMA News Wire - American Medical Association; by Tanya Albert Henry; 7/18/24 Among America’s physicians, more than nine in 10 surveyed say that prior authorization has a negative impact on patient clinical outcomes. Most telling is that 78% of physicians reported that prior authorization often or sometimes results in their patients abandoning a recommended course of treatment, according to the results of the AMA’s annual nationwide prior authorization survey (PDF) of 1,000 practicing physicians. In addition to patients forgoing care, physicians also see the burdensome insurance company practice known as prior authorization leading to care delays and serious adverse events. [Click on the title's link for more specific stats.]

When you know you might forget everything: Living with the Alzheimer’s gene Intelligencer; by Amelia Schonbek; 7/16/24 In 2017, 23andMe began offering tests for the genetic risk of developing certain health conditions like celiac disease, Parkinson’s, and late-onset Alzheimer’s. The Alzheimer’s test will tell you if you have the gene variant APOE4, which means you have an increased likelihood of developing the disease. One in four people carry a single copy of the gene, but 2 to 3 percent of the population have two copies — one from each parent — and have a much higher probability. As with all of 23andMe’s upcharged “Health Predisposition Reports,” the sell on it was self-empowerment: Once you know, you can plan, allowing you to take charge of your well-being. 

Report shows substantial financial opportunity in prioritizing research, education on women’s heart health Pharmacy Times; by Alexandra Gerlach; 7/13/24 A report published by authors from the American Heart Association (AHA) and the McKinsey Health Institute showed that addressing the gender gaps prevalent in the treatment of cardiovascular disease (CVD) could boost the US economy by $28 billion annually by 2040 and potentially address the 1.6 million years of life lost due to barriers to care experienced by women. The paper identifies multiple pathways to addressing the lack of representation and access to care for women with CVD... CVD is the leading cause of death in women in the United States, affecting nearly 60 million individuals, and it makes up over a third of the health gap between men and women. 

Americans focus on a good life. But what about a good death? WBUR Radio, Boston's NPR; by Here & Now host Deepa Fernandez; 7/5/24 Americans spend a lot of time thinking about what it means to live a good life. But what about a good death? In 2022 researchers at the Duke University Global Health Institute ranked countries by the quality of their end-of-life care, and the United States ranked only 43, just below Colombia, Romania, Nigeria and Guatemala. So what does this country need to do? Recent Middlebury College graduate Samara Gordon Wexler is thinking about that question. The 22-year-old winner of a prestigious Watson Fellowship is about to embark on a five-continent journey. She'll visit, work and train with end-of-life practitioners from Ghanaian coffin artists to Indian trekkers to find out what it means to die a good death and how to make it happen here.

Veteran Honored: 101-year-old recognized for bravery on the battlefieldThe Glendale Star, Tempe AZ; by Lin Sue Flood; 7/5/24 At the tender age of 18, Ned Kent joined the Army. That was January 1940 ... and he served faithfully through July 1945 ... [Kent] fought on the front lines of the Battle of the Bulge in Belgium. He and his troop won a Bronze Heart for their heroic actions in storming Normandy while under German bombardment on D-Day, now over 80 years ago. His daughter Debi is enormously proud of his courage. “My dad is a hero, but my dad is also a humble man,” she said. Proving her point, the 101-year-old was quick to add, “I’m no hero. I just served in the Army.” But those five years of service were difficult to talk about. It took Kent decades to open up about what he experienced, including the horrors witnessed while liberating a concentration camp. One of the people he shared openly with was Hospice of the Valley social worker Roberta Fellows. Once she learned about his time in the service, she was determined to give him some much-needed recognition for all he endured. [Click on the title's link to continue reading.] 

Factors affecting palliative care collaboration with pain medicine specialists Clinical Pain Advisor; by James Maitlall, MD; 6/27/24 Structured collaboration between physicians working in palliative care (PC) and pain medicine (PM) may increase PC physician referral of seriously ill patients to PM specialists and potentially optimize their care, according to study results published in the Journal of Pain and Symptom Management. ... In a survey study, a multicenter team of investigators explored attitudes and beliefs among US PC physicians regarding PM specialists, as well as factors potentially impacting collaboration between physicians in these 2 areas of practice. ... The American Academy of Hospice and Palliative Medicine (AAHPM) approved the survey for distribution to 1000 of its physician members, who were selected at random. ... The investigators concluded, “Although we found that PC physicians have highly positive attitudes about the value of PM specialists, referral rates remain low, even for IDDS implantation, which has perhaps the largest body of evidence for patients with complex cancer-associated pain.”