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Open to Options® – A Cancer Support Community Resource

The Cancer Support Community has created a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you.

We had the chance to talk with CSC’s research manager, Jamese Johnson, about Open to Options®, and this is what she had to say.

Tell me about Open to Options® and what unmet need does it serve?

Making a decision about cancer treatment can be an overwhelming experience for many people. Important decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible. Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.

As you look at all the treatment options with your doctor and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments such as surgery, chemotherapy and radiation, can have difficult side effects. It’s important for you to weigh the benefits and the challenges, and make a decision that is best for you.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. The program is available in English or Spanish for people with any stage of cancer.

Who is this service for- patients, care partners, and/or families? How would they use it?

This service is primarily meant for patients who are considering treatment options, but family members can be included in the Open to Options® session.

How can they benefit from using Open to Options®?

The service can help you get the most out of your doctor’s visit and help you talk more openly with your health care team about the things that really matter to you in your cancer treatment. In a brief 30 minute to one-hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and your doctor explore your situation and develop the best treatment option for you. Open to Options® has been shown to reduce distress, increase confidence in asking questions, reduce decision regret and lead to more productive consultations between the patient and the health care team, including important conversations about clinical trials.

In addition to Open to Options®, Cancer Support Community has also created Let’s Talk Treatment Options. How can patients use this resource?

Building on the success of the Cancer Support Community’s treatment decision counseling program, Open to Options®, Let’s Talk Treatment Options provides an interactive tutorial to help cancer patients build a personalized question list that outlines important questions, concerns and important goals and priorities related to treatment.

How can patients and their families learn more and get help in using the tools?

Open to Options® is available through our Cancer Support Community affiliates. Find an affiliate near you. If you are unable to find a program near you, call our Toll-Free Cancer Support Helpline, 1-888-793-9355, to speak to a helpline counselor about the program.

To learn more about Let’s Talk Treatment Options, our online tool, please check out http://www.talkingtreatment.org/

Spotlight On: Cancer Support Community: A Great Resource

Spotlight

The Cancer Support Community is an international non-profit organization dedicated to providing support, education and hope to cancer patients. CSC’s website has a wealth of information and resources available, including links to advocacy organizations, online support groups and discussion boards and a Cancer Experience Registry where you can obtain information about your specific cancer and help with research in that area.

I thought it worthwhile to copy the CSC information for two helplines that CSC offers to any cancer patient. The first helpline, called Open to Options® helps cancer patients make decisions about treatment. The second helpline, called Cancer Support Helpline® is for patients, caregivers and healthcare professionals who are looking for information or support. Please avail yourselves of these excellent resources from the Cancer Support Community!

Open to Options – Patients

Making a decision about cancer treatment can be an overwhelming experience for many people. Open to OptionsImportant decisions need to be made about treatment for new or recurrent cancer as well as ending treatment. Sometimes it is hard to know what questions to ask the doctor. One proven strategy for getting the most out of your visit is to be as prepared as possible.  Having a written list of questions can help you feel more organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.As you look at all the treatment options with your oncologist and your family, you will need to determine what you can realistically expect from treatment. Talk with your doctor to better understand your type and stage of cancer as well as what your doctor feels is the best goal of treatment for you. A goal of treatment may be cure, slowing or controlling tumor growth, or extending your life while maintaining quality of life. Some cancer treatments are designed to control pain and other symptoms when a cure is not possible. Surgery, chemotherapy and radiation can have difficult side effects, so it’s important for you to weigh the benefits and the challenges, and make a decision that is best for you. Cancer treatments today have come along way from years ago. There are many medications that reduce side effects and make it possible for you to continue to work or keep up with your usual activities.

The Cancer Support Community has a decision support counseling program called Open to Options® that can help you prepare for an appointment in which you will be making a treatment decision. Using this service can help you get the most out of your visit with the oncologist and help you talk more openly with your health care team about the things that really matter to you the most in relation to your cancer treatment. In a brief one hour session, an Open to Options® Specialist can help you develop a personal list of questions and concerns that will help you and doctor explore your situation and develop the best treatment option.

Tips for Treatment Decision-Making

  • Learn about your cancer and treatment options. Try and understand as much as you can about your diagnosis and the possible treatments. There are excellent booklets and online information available through the Cancer Support Community, the National Cancer Institute and many other organizations to help you get more informed.
  • Bring someone else along.  Bring a family member or friend along to listen along with you, take notes and keep track of the options.
  • Talk about your decision with someone you trust. It can be helpful to talk through your ideas and concerns with family, friends, clergy or health professional. Some people find that support groups are a useful place to gather information and suggestions from others.
  • Consult guidelines or other decision-making tools. The American Society of Clinical Oncology (ASCO) and other cancer organizations publish guidelines and treatment decision-making tools to help doctors and patients understand various treatment. In addition, some cancer centers offer sophisticated statistical tools you can use with your doctor to help determine the best treatment option based on your personal medical information. Always use treatment guidelines and other tools with the help and interpretation of your doctor.

In addition to the Toll-Free Cancer Support Helpline, 1-888-793-9355, Open to Options is also available through these Cancer Support Community affiliates. Find a CSC affiliate near you and call today for an appointment!

 

Cancer Support Helpline®

Whether you are newly diagnosed with cancer or a long-time cancer survivor or caring for someone with Cancer Support Helplinecancer, or a health care professional looking for resources, CSC’s TOLL-FREE Cancer Support Helpline is open Mon-Fri 9 am- 9 pm ET.You are welcome to call anytime.  If you receive a recording, please leave your name and contact number and one of our counselors will call you as soon as possible.Please call 1-888-793-9355 and a CSC Call Counselor will be happy to assist you with any of the following concerns:

  • Information about local, regional, or national resources
  • Finding a Cancer Support Community program near you
  • General information about the Cancer Support Community and its services (in-person, online and by phone)
  • Help in talking about some of the emotional and social worries that cancer sometimes brings into our lives
  • Information about, and assistance in, ordering Frankly Speaking educational materials
  • Help finding a nearby support group, online support group or discussion group to connect with others
  • Short-term cancer counseling and emotional support
  • Open to Options™ treatment decision support counseling
  • Make a donation to the Cancer Support Community
  • Access to CancerSupportSource™ online distress screening program
  • Live web chat available during call center hours – CLICK HERE TO CHAT NOW!
Disclaimer
The Cancer Support Community provides this information as a service. Publication of this information is not intended to take the place of medical care or the advice of your doctor. The Cancer Support Community strongly suggests consulting your doctor or other health professional about the information presented.

 

Does Patient Empowerment Lead to Better Cancer Treatment Outcomes?

According to a study presented at the World Congress of Psycho-Oncology (WCPO) in late July, 72.3% of patients diagnosed with cancer defer their treatment decisions to their doctor. While this number is not surprising, it is cause for concern.

With a diagnosis of cancer comes a barrage of possible options for treatment. Often, choosing between these options can be overwhelming and intimidating, especially as there is typically not a clear answer and many uncertainties in terms of potential outcome.

How can we help patients navigate these tough decisions, such as whether or not to get a second opinion or participate in a clinical trial? How can we help patients gain the confidence they need and help them feel empowered and in control as they discuss treatment options with their healthcare team?

 Helping patients self-advocate

A survey done last year by Patient Power of 1295 chronic cancer patients showed that 73% of those
surveyed said the health information they found online helped them feel more confident and more in control of their health (see infographic at the end of this post). Learning about your illness from experts and from other patients can be a rewarding and empowering experience.

Organizations such as the Cancer Support Community (CSC) and others, including us at the Patient Empowerment Network (PEN), offer programs to help patients stand up and advocate for themselves and become informed so that they, in partnership with their heath care team, can make the right decisions for them.

Programs and resources designed to empower patients

The study presented at WCPO found that educational workshops, such as the CSC’s Frankly Speaking About Cancer program, that aim to educate and empower those affected by cancer can have dramatic outcomes in terms of patient confidence in making treatment decisions. In fact, the study found that as a result of attending a Frankly Speaking About Cancer workshop, 85.5% of respondents reported having increased confidence in discussing treatment options and making treatment- related decisions with their health care team. (Harvey, et al 2015)

 

Live audience at a recent town meeting for patients

Live audience at a recent town meeting for patients

PEN’s Town Halls and Patient Café programs give patients and carers tools and resources to discuss treatment options, including clinical trial participation, with their doctor and their family and make informed and empowered decisions throughout their illness.

Participant surveys from these meetings are overwhelmingly positive. Over 80% typically rate the event as good to excellent, and many write in emails like the following:

 

 

“Thank-you for all you do and have done to help those of us with CLL better understand this journey we are traveling.   The information you give is such a great help when I talk with my doctors and just for peace of mind in better understanding what I am facing.  Mary”

Answering your questions about clinical trials

In addition to helping facilitate conversations about treatment decisions, PEN offers a comfortable and convenient place to find user-friendly information about clinical trials. One of our goals is to help you understand the process by introducing you to people just like you who have participated in, or are considering participating in, clinical trials. We also offer opportunities to hear from doctors, nurses, caregivers, caseworkers and others about their perspective on what it means to participate in a clinical trial.

Patients helping patients

"Powerful Patients" at a recent town meeting

“Powerful Patients” at a recent town meeting

There are many resources available to help patients navigate their journey and we encourage you to take full advantage of them. If you can’t find what you need, don’t hesitate to reach out to let us know how we can better help you. And, most importantly, please remember, you are not alone. We stand beside you as a community of patients helping patients.

 

 

 

 

Patient Power Infographic

Sources:

http://www.cancersupportcommunity.org/General-Documents-Category/Research-and-Training-Institute/Posters-and-Presentations/Factors-Influencing-Treatment-Decisions-Among-Cancer-Patients.pdf

http://www.patientpower.info/about/survey-results-2014