Tailoring Pain Questionnaires To Cancer Patient Preferences

woman sitting on ground

If you’ve been around Lacuna Loft for any length of time, you know how we love pointing you towards new tools and new research.  Today we’re letting you in on an easy and very impactful research opportunity with Fred Hutch researchers!

Many people living with cancer experience symptoms – including pain – which can last for years after cancer treatment. The best, and often only, way to assess post-treatment symptoms in survivors is by using patient-reported outcomes (PROs). PROs are questionnaire-based measures that ask patients directly about their symptoms and feelings. In this study we aim to develop PROs that are tailored to, and hence potentially meaningful for, individual patients. We are looking for adult cancer survivors with pain in the US to complete two surveys over one week.

For more information and to see if you are eligible, please go here.

Want to Make Real Change In 5 Minutes?

telephone booth

Young adult cancer patient and survivor stories and voices are powerful.  When you use your voice to help make change, you are helping yourself and every other cancer patient and survivor who comes after you have better access to support and care.  This morning I got an email from the Leukemia & Lymphoma Society with really important information on how you can, in just a few minutes, make change with your voice in a very tangible way.  It only takes a few minutes to call the number below and they’ve even provided speaking points so you don’t have to figure out what to say by yourself if you don’t want to!  Will you call today?  I did!

Congress is considering an important bill this week that would stop the spread of dangerous junk insurance plans which discriminate against patients with pre-existing conditions. This is just one of seven bills that have been packaged together to protect and expand meaningful health care access and promote affordability for patients.

We have a chance to pass this meaningful legislation and protect patients, and we need your voice with us to convince Congress to act. Will you make your 1 minute call today?

Just dial 1-855-980-5634 to be connected with your representative – a recording will walk you through some talking points, and we’ve also included a script below. When someone at the office picks up, just say:

Hi, I’m [your name], one of your constituents from [your city]. I’m calling to ask my elected officials to stand with cancer patients and vote YES on H.R. 987 to stop discrimination against patients based on pre-existing conditions. The Strengthening Health Care and Lowering Prescription Drug Costs Act will protect and expand meaningful health care access and promote affordability for patients across the country.

[If you want, you can tell them why this issue matters to you and your loved ones.]

It’ll only take a minute, but your quick call will help rein in junk insurance plans.

These plans are meant to cover short periods of time – but they use dangerous loopholes to avoid important patient protections: they often have no limit on cost-sharing, no guaranteed coverage for essential cancer care like prescription drugs and no protection against annual or lifetime limits on care. Without these protections, cancer treatment is often out of reach.

Please call 1-855-980-5634 today to support H.R. 987 and then forward this message to your friends and family and ask them to do the same.

Cancer Care by Zip Code: Examining Geographic Health Disparities in the US

NY houses

ASCO Connection recently published an article talking about health disparities (“a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer related to conditions among specific populations, including racial and ethnic minorities, sexual and gender minorities, older adults, and rural patients, among other groups”…that is a mouthful!) based on where someone lived who was diagnosed with cancer.  In the world of cancer survivorship, Lacuna Loft sees people from all over the country.  We have participants who are based in urban areas but for whom getting to a place for survivorship support is cumbersome all the way to people who live rurally and have no cancer center (or other known young adult cancer survivors) within a hundred miles.  This article isn’t based on young adults specifically, but it underlines the effect that geography has on outcomes…on whether people are surviving their cancer.

“Exciting new breakthroughs in cancer research are helping to make great strides in what is possible for patients with cancer. But they are not necessarily leading to equitable disease outcomes.

According to the Centers for Disease Control and Prevention (CDC), while the overall age-adjusted incidence of cancer is lower in rural areas than urban areas, rural areas have higher cancer death rates. This difference in mortality is growing wider over time. In these instances, new cutting-edge therapies are not enough.”

The fact that this research is fairly recent, done within the last few years, also underlines how important it is for patients to speak up.  If a physician doesn’t ask you questions but you have something in your cancer treatment regime that is overly burdensome (traveling for treatments for instance), taking charge and using your patient voice to advocate for better care is a must.  This is true in the cancer treatment space as well as the cancer survivorship space.  Sometimes, a better solution isn’t possible…but we can always ask!

Read more of this very interesting article here.