Study of breast cancer message boards finds frequent discussion of drug side effects, discontinuation of therapy
(Medical Xpress)—In the first study to examine discussion of drug side effects on Internet message boards, researchers from the Perelman School of Medicine at the University of Pennsylvania found that breast cancer survivors taking the commonly prescribed adjuvant therapy known as aromatase inhibitors (AIs) often detailed in these forums troublesome symptoms resulting from the drugs, and they were apt to report discontinuing the treatment or switching to a different drug in the same class. The findings are published online this week in the journal Pharmacoepidemiology and Drug Safety. With 2.5 million breast cancer survivors living in the United States today – the largest group of cancer survivors – researchers say the findings have broad implications for physician communication with patients about these issues to help to promote proper adherence and inform patient-to-patient discussion online.
"Both the availability and anonymity provided by message boards – and increasingly, other forms of social media such as Twitter and Facebook – offer patients a place to voice concerns and connect with an audience of peers in similar situations. This type of social support can be very valuable to patients who are struggling with side effects like joint pain, and may serve as a forum where they will be encouraged to seek help from their physician," says the study's lead author, Jun J. Mao, MD, MSCE, an assistant professor of Family Medicine and Community Health, who directs the Integrative Oncology program in Penn's Abramson Cancer Center. "However, our findings indicate that message board discussion of the side effects of AIs may also have negative consequences for adherence to therapy, or make patients reluctant to begin taking these drugs at all."
AIs are the most commonly used medications to prevent recurrence among post-menopausal women with hormone receptor positive breast cancer, leading to an annual revenue of over $3.5 billion worldwide. Previous studies have shown that nearly half of women taking AIs do not complete their recommended course of treatment, and that those who stop taking the drugs or don't take them as prescribed have a higher chance of dying of both breast cancer and other causes.
Using both quantitative and qualitative methods, the researchers analyzed 25,256 message board posts related to AIs hosted on 12 popular web sites, including breastcancer.org, Susan G. Komen for the Cure, Oprah.com, and WebMD. They found that more than 18 percent of authors mentioned at least one side effect. Most commonly, patients reported joint and musculoskeletal pain, also known as arthralgia, which was mentioned by about a quarter of those who wrote about side effects; along with hot flashes and night sweats, osteoporosis, and weight gain.
Among authors who wrote about taking AIs, 12.8 percent mentioned discontinuing the drugs with no plans to take another kind, and another 28 percent mentioned switching to a different type of AI. Patients often cited severe joint pain as the reason for their discontinuation of the therapy, which is typically prescribed for several years following active treatment. A qualitative analysis of 1,000 randomly selected posts revealed that 18 percent of messages were from authors seeking advice from other message board users on how to cope with joint pain, and 27.8 percent gave advice, with about a third of those messages including tips for dealing with that side effect. Forty two percent of advice-givers recommended prescription or over-the-counter drugs for pain relief, and 44 percent mentioned herbal or mineral supplements such as glucosamine and chondroitin. Thirty percent of women who gave advice reported using exercise to get relief or prevent pain from worsening. Twenty-seven percent of the advice-givers urged others to seek help from their own physicians, but only 8 percent explicitly urged others to stay on AIs.
Typical responses among those who reported struggling with side effects spoke of a shift in their identity since being diagnosed with cancer, coupled with a profound fear of discontinuing the therapy: "I hurt, ache, swell, pain, shuffle, have significant join pain, have cognitive issues, and feel like I'm 80 when I'm mid-50's. But I'm also so afraid of the breast cancer that I shuffle alongside of everyone, like you do." On the other end of the spectrum, some women described feeling that the benefits of the therapy outweighed the risks: "The way I look at it, at 53 years old, I was likely to get arthritis anyway, and any discomfort as a result of treatment is well worth prolonging my life." Advice-giving messages often included sentiments of hope, including reminders that there are multiple types of AIs that women can try if they have problems, and they underscored the importance of taking the drugs for a few months before making a decision about switching or discontinuing the therapy.
Mao and senior author John Holmes, PhD, associate professor of Medical Informatics in Epidemiology, suggest that their findings reveal that mining social media discussions about health issues may provide novel insights about patient perceptions of drug side effects and their potential impact on adherence to recommended therapies.
"On the internet, patients come together from a broad swath of geographic areas, from many racial and socioeconomic backgrounds and from treatment in different types of clinical settings," Holmes says. "This range of perspectives would be difficult to capture in a typical clinical trial or survey, and may provide valuable data to guide health care providers seeking new ways to engage with patients and help them make decisions that will improve their health and provide them with a good quality of life."
Provided by University of Pennsylvania School of Medicine
- New studies point to strategies for reducing painful breast cancer drug side effects Sep 28, 2009 | not rated yet | 0
- Study helps eliminate causes for joint pain linked to commonly used breast cancer drugs Nov 11, 2011 | not rated yet | 0
- Genetic differences may influence joint pain among women taking lifesaving breast cancer drugs Jun 01, 2010 | not rated yet | 0
- 13 percent of women stop taking breast cancer drug because of side effects Sep 06, 2007 | not rated yet | 0
- Why women quit breast cancer drugs early Dec 09, 2011 | not rated yet | 0
- Motion perception revisited: High Phi effect challenges established motion perception assumptions Apr 23, 2013 | 3 / 5 (2) | 2
- Anything you can do I can do better: Neuromolecular foundations of the superiority illusion (Update) Apr 02, 2013 | 4.5 / 5 (11) | 5
- The visual system as economist: Neural resource allocation in visual adaptation Mar 30, 2013 | 5 / 5 (2) | 9
- Separate lives: Neuronal and organismal lifespans decoupled Mar 27, 2013 | 4.9 / 5 (8) | 0
- Sizing things up: The evolutionary neurobiology of scale invariance Feb 28, 2013 | 4.8 / 5 (10) | 14
How can there be villous adenoma in colon, if there are no villi there
12 hours ago As title suggest. Thanks :smile:
How can there be a term called "intestinal metaplasia" of stomach
May 21, 2013 Hello everyone, Ok Stomach's normal epithelium is simple columnar, now in intestinal type of adenocarcinoma of stomach it undergoes "intestinal...
Pressure-volume curve: Elastic Recoil Pressure don't make sense
May 18, 2013 From pressure-volume curve of the lung and chest wall (attached photo), I don't understand why would the elastic recoil pressure of the lung is...
If you became brain-dead, would you want them to pull the plug?
May 17, 2013 I'd want the rest of me to stay alive. Sure it's a lousy way to live but it beats being all-the-way dead. Maybe if I make it 20 years they'll...
MRI bill question
May 15, 2013 Dear PFers, The hospital gave us a $12k bill for one MRI (head with contrast). The people I talked to at the hospital tell me that they do not...
Ratio of Hydrogen of Oxygen in Dessicated Animal Protein
May 13, 2013 As an experiment, for the past few months I've been consuming at least one portion of Jell-O or unflavored Knox gelatin per day. I'm 64, in very...
- More from Physics Forums - Medical Sciences
More news stories
(HealthDay)—The American Cancer Society, which is celebrating on Wednesday a century of fighting a disease once viewed as a death sentence, is making a pledge to put itself out of business.
Cancer 1 hour ago | not rated yet | 0
National Lung Screening Trial (NLST) investigators also conclude that the 20 percent reduction in lung cancer mortality with low-dose computed tomography (LDCT) versus chest X-ray (CXR) screening previously reported in the ...
Cancer 2 hours ago | not rated yet | 0
Researchers have developed a new drug delivery system that allows inhalation of chemotherapeutic drugs to help treat lung cancer, and in laboratory and animal tests it appears to reduce the systemic damage ...
Cancer 5 hours ago | not rated yet | 0 |
When turned on, the gene p53 turns off cancer. However, when existing drugs boost p53, only a few tumors die – the rest resist the challenge. A study published in the journal Cell Reports shows how: tumors that live even i ...
Cancer 5 hours ago | not rated yet | 0 |
Study leader, Professor John Mathews from the University of Melbourne said this small increase in cancer risk must be weighed against the undoubted benefits from CT scans in diagnosing and monitoring disease.
Cancer 9 hours ago | not rated yet | 0
(HealthDay)—For HIV-infected individuals with recurrent Clostridium difficile infection, fecal microbiota therapy is feasible, according to a letter published in the May 21 issue of the Annals of Intern ...
57 minutes ago | not rated yet | 0
Calorie information in fast food restaurants used by 40 percent of 9-18 year olds when making food choices
A new study published online today (Thursday) in the Journal of Public Health has found that of young people who visited fast food or chain restaurants in the U.S. in 2010, girls and youth who were obese were more likely ...
2 minutes ago | not rated yet | 0
(HealthDay)—Migraines and depression can each cause a great deal of suffering, but new research indicates the combination of the two may be linked to something else entirely—a smaller brain.
2 hours ago | 5 / 5 (1) | 0 |
An independent panel of experts on Wednesday recommended US approval of a new Merck sleeping pill called suvorexant, but expressed concerns over the highest dosage and risks of drowsy daytime driving.
1 hour ago | not rated yet | 0
Until now, little was scientifically known about the human potential to cultivate compassion—the emotional state of caring for people who are suffering in a way that motivates altruistic behavior.
3 hours ago | not rated yet | 1 |