ASCO National Cancer Care Quality Study

ASCO National Cancer Care Quality Study Chat Transcript with Ezekiel Emanuel, MD, PhD
Thursday, June 16, 2005, 2:00 – 3:00 PM ET

Moderator: On behalf of the American Society of Clinical Oncology (ASCO), welcome to the Cancer.NetAsk the ASCO Expert chat on the ASCO National Cancer Care Quality Study, a live question-and-answer session hosted by Ezekiel J. Emanuel, MD, PhD.

During this hour, Dr. Emanuel will answer as many questions as possible. Due to an increasing number of chat participants and number of questions submitted for each chat event, time simply does not allow us to address all of your questions, and we encourage you to consult your doctor and cancer care team.

Some questions may be adapted so that Dr. Emanuel's answers can help as many people as possible.

Dr. Emanuel will take questions from 2:00 - 3:00 PM ET. As you prepare your questions, please keep in mind that Dr. Emanuel is unable to give individual medical advice in this setting, nor is he able to address questions that include information specific to one person's medical profile.

The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.

This forum is neither intended nor appropriate to serve as a means of obtaining a second opinion on cancer diagnosis or treatment. In response to questions about specific drugs, Dr. Emanuel's comments will focus only on the state of current research and clinical trials.

It is advised that you do not delay seeking professional medical advice based on any information received during this chat event.

The chat is governed by all terms and conditions of the Cancer.Netwebsite. Participation in this chat event means that you fully understand and agree to abide by the terms and conditions of the Cancer.Netwebsite.

Good afternoon and welcome. Thank you for joining us. Dr. Emanuel will now begin taking questions.

Ezekiel J. Emanuel, MD, PhD, is currently Chair of the Department of Clinical Bioethics at the Warren G. Magnuson Clinical Center at the National Institutes of Health, and Chair of the ASCO Task Force on Quality Cancer Care.

He has published widely on the ethics of clinical research, health-care reform, international research ethics, end-of-life care issues, euthanasia, the ethics of managed care, and the physician-patient relationship.

Dr. Emanuel, thank you for taking the time to join us today.

Guest24: I was just on the Cancer.Net website and read the summary results from the National Study on Cancer Care Quality. The results stated that between 29% and 74% of women with breast cancer received the appropriate amount of chemotherapy and between 62% and 85% of people with colorectal cancer received an appropriate dose of chemotherapy. I'm wondering if there is a breakdown on age for these numbers and whether age has an impact on patients receiving appropriate amount of chemotherapy. Also, one of the aims of the study was to see if patients' side effects are being effectively managed. I'm wondering how can I find further information on this topic.

Dr. Emanuel: To answer part 1, there was an age effect, and typically younger women are more likely to get chemotherapy and the right chemotherapy. That's been seen in other studies. But one of the things we are hoping is to make doctors aware that all of the their patients, when they are eligible for chemotherapy, should receive it.

The areas where we are not meeting the quality standards are usually helpful in getting doctors to change their practices. For example, giving chemotherapy to older patients is one of those areas where we would expect that the release of the quality data would change practice.

To answer part two, the study merely assessed whether side effects were effectively managed to find out how side effects should be best managed. For more information, go to sideeffects.

Beth: Why didn't all patients receive the highest quality of care possible for their conditions? If there is a specific standard of care for a disease, why don't all doctors use it?

Dr. Emanuel: We wanted to assess how frequently the quality standards were not met. Previous data had not given a clear picture. It is unfortunate, and ASCO takes it very seriously, that 100% of the patients did not get quality care.

One of ASCO's missions is to improve that and to work with the oncology community to make sure all people with cancer get the best quality of care. ASCO has done this by this study–establishing guidelines for the treatment of cancers.

Bella: My grandmother's cancer has spread to her bones, and we think she's in a lot of pain. How can we bring this to the attention of the medical staff? Is pain management a quality-care measure?

Dr. Emanuel: Managing pain has been recognized by many medical organizations as a major quality standard. In fact, many health-care organizations and hospitals have made pain the "fifth vital sign." ASCO has developed a curriculum on pain and palliative care; the World Health Organization (WHO) and National Cancer Institute (NCI) also have guidelines on pain.

If patients have pain, their family should certainly tell the doctor, and it may be necessary to get a consultation with a pain specialist. Your job is certainly to make the physician aware of your grandmother's pain.

Whit: I noticed the study was done in five different areas of the country. Did the quality of care a patient received correlate with the location of the patient?

Dr. Emanuel: First, we assessed many different quality-of-care standards, from diagnosis of cancer, to surgery, to radiation therapy, chemotherapy, and follow-up. The quality in each one of these areas did vary by city, but not consistently.

That means that one city was not the best in all measures. Each individual aspect of cancer care needs to be looked at to be sure it is meeting quality-of-care standards.

Guest34: My mother is newly diagnosed with breast cancer. What do you recommend I do to make sure she is getting the highest quality care possible to treat her disease?

Dr. Emanuel: What you can do is ask your medical doctors to be very clear with you about the stage of disease, how big the cancer was, and how many lymph nodes were involved. Ask the doctor at every major stage if there are options and what the options are.

And, ask the doctor if the treatment conforms to ASCO guidelines. There are many guidelines for breast cancer treatment. For more information, see Cancer.Net, ASCO, and the National Comprehensive Cancer Network (NCCN). You can use these guidelines to assess whether the care she is being recommended meets quality guidelines.

Finally, we recommend that you keep a record of the care she is getting including the pathology report, the surgical report, and a summary of the radiation therapy and chemotherapy she may get.

Guest128: Can you discuss why only 62% to 85% of people with colorectal cancer receive the appropriate dose of chemotherapy?

Dr. Emanuel: That not every patient received the recommended dose of chemotherapy is a concern to ASCO. We are examining the data to see if there are good reasons (for example, health problems and patient refusal) that might explain why not all patients received optimal therapy.

Because patients with colorectal cancer tend to be older, they may be too frail or have other diseases that prevent them from getting chemotherapy. But, in general, ASCO is concerned about this number and wants to be sure that in the future we do much better at getting all eligible patients the appropriate dose of chemotherapy.

Guest56: What kind of questions should you ask when seeking a cancer surgeon? Our insurance company gave us three names, and I'm not sure where to go from here.

Dr. Emanuel: That's a great question. Everyone, even doctors, face this issue for their families. The first thing to ask is do they specialize in the type of surgery.

In general, it is better to go to a cancer surgeon than a general surgeon who also does cancer care. Second, in general, a surgeon who does more surgery rather than less will be more skilled and have fewer complications.

Finally, getting recommendations from other cancer doctors is probably a good idea.

Guest26: What about this national database for medial records that I keep hearing about? Will this sort of tool help make sure I am getting better care? How does that work?

Dr. Emanuel: What a great question! It's a big policy question. A national database will definitely help individual patients.

First, it will allow us to assess much more accurately what works and what doesn't work in terms of cancer treatments. Second, it will allow us to determine where doctors are not giving best care and devise interventions to improve that care.

Frequently, just collecting the data about quality of cancer care is enough to stimulate doctors to improve their care.

Jin: What information should be on my medical records, and whom can I ask to explain what all the data on my medical records really means?

Dr. Emanuel: You medical record should be a record of all the treatment choices that were made, the results of the tests you got, and the results of the treatment you received. There are a lot of numbers, and sometimes it can be very hard to determine what is in the medical record.

Even our researchers had trouble reading a lot of medical records and finding the information they needed. The best person to help you read your medical record is your doctor.

If you make an appointment to do this, make sure you've collected all the records for your doctor, and make him/her aware that's what you want to do because it will take time.

Harmony: It says on the study summary that a self-report survey was part of the measurement process for the quality of care. What kind of questions were survivors asked?

Dr. Emanuel: One area we were concerned about was how they were doing physically and emotionally several years after their treatment. A second area we asked about was recurrence and screening to be sure they were getting the appropriate treatment after therapy.

We also asked about which doctor was following them.

Guest70: Are you going to do additional studies that address quality of care for ethnic minorities?

Dr. Emanuel: ASCO is very interested in whether care for ethnic minorities might be different than that of whites. This is a very complicated study to do from a technical perspective, and ASCO is now exploring ways of making that assessment.

I can't tell you exactly what kind of study, but I believe in the next year ASCO will launch an initiative on this.

Mike: I feel like my doctor isn't giving me all the information I need about how my colon cancer is being treated. How can I be sure that I am getting all the information I need to make the best decisions about my care?

Dr. Emanuel: It is important to start out knowing what tests you need and what treatments are possible. That can be obtained from a treatment guideline available at Cancer.Net. Using that standard in the treatment guideline, you can directly ask your doctor whether your care meets those guidelines.

liza: My mother has colorectal cancer, and she doesn't like to question her doctors. Do you have any suggestions on how she can communicate better with her doctor or how we (her children) can help with this process?

Dr. Emanuel: This is not unusual. Often, patients are scared they might offend their doctors by raising questions. Information on Cancer.Net can suggest ways to approach your doctor. In addition, as a family you can go with your mother to the doctor and communicate that you don't understand the treatments, and it would be helpful if he or she could explain this to you so you can provide the best support for your mother. Your mother can listen in and learn about her own treatment.

As long as you ask the question not implying the doctor is incompetent, this shouldn't be offensive.

Moderator: Transcripts of today's chat will be available Friday, June 17 on Cancer.Net by 12:00 PM ET. More information about receiving transcripts will be provided at the end of the chat.

Harmony: In the five areas where the study was conducted, how were the survivors chosen—randomly or through a specific health-care provider?

Dr. Emanuel: This is a sophisticated question of study design. We first went to hospitals and asked them for lists of patients they cared for who received treatment in 1998.

We then contacted the patients and asked them if they would like to participate in the study. In all the cities, but Los Angeles, we used all the patients we contacted. In Los Angeles, we randomly selected because there were too many patients.

Harmony: Why did ASCO choose to study breast and colorectal cancers as opposed to other cancers?

Dr. Emanuel: This was a major choice at the start of the study in 1999 - 2000. We decided to look at breast and colorectal cancers because they are common cancers. They account for a large number of deaths in the United States. And most importantly, we know that the right surgical, radiotherapy, and chemotherapy interventions can make a big difference in survival and cure.

Getting good quality of care for these cancers is very important for many patients and for curing them of their cancer.

doc: There are currently several treatment guidelines available from different organizations: ASCO, NCCN, American Cancer Society (ACS), and others. Could you discuss what treatment guidelines are best to follow to make a decision, and is there an ongoing process to develop a set of standard guidelines to reduce confusion?

Dr. Emanuel: This is a question from someone who has really done their research. All of the guidelines should provide high-quality, proven care and are regularly updated.

There is no process yet to standardize only one single guideline.

pete: Once you have identified opportunities to improve care, what groups are going to be responsible for seeing that those improvements are implemented?

Dr. Emanuel: ASCO is now working with a variety of organizations to try to improve care. First, we are working with practicing oncologists to get them to recognize the deficiencies in their own practice and to improve care.

Second, ASCO is working with the NCI to support various interventions to improve quality of care.

Third, ASCO is working with the National Quality Forum, which brings together patient advocacy groups, NCI, and various payers (to the health-care system) to improve quality of care.

Finally, ASCO is working with Medicare and insurers to enhance quality of care. No single organization can tackle this big problem alone.

Guest62: My aunt has metastatic breast cancer. Are there quality markers for metastatic disease? Do you have recommendations as to how she can receive quality care?

Dr. Emanuel: First, this study by ASCO did not evaluate the quality of care for metastatic breast cancer, only early stage breast cancer. There are guidelines for quality care for metastatic and advanced breast cancer at the NCCN. You can consult these guidelines, and ask your doctor whether the treatment conforms to these guidelines.

Teresa: Are there any studies that look at the quality care of survivors of breast cancer? I have been cancer-free for eight years and have seen almost five different doctors, all of whom have different advice for follow-up care.

Dr. Emanuel: The guidelines at the websites (Cancer.Net, ASCO, NCCN) should provide recommendations for follow-up care. At the moment, there isn't a study done by ASCO, but individual researchers are becoming interested in survivorship and how well patients do after being cured. This is a growing area of research interest.

Harmony: How do you think this study will improve the health of those cancer patients who are uninsured or don't have the funds to get the proper treatment for their illness?

Dr. Emanuel: That is a very serious question. One of the things we looked at, but have yet to report on, is how the uninsured compare with the insured. ASCO has been working very hard to try to ensure coverage for all people with cancer.

It is no use for us to develop new therapies, if patients who need them cannot receive them for lack of funds. It's a social obligation to provide curative therapy for people with cancer.

Andy: Do you have any specific suggestions for how patients who are on chemotherapy can receive the highest quality care?

Dr. Emanuel: People on chemotherapy need to receive a proven cancer regimen at the proper doses and have any side effects (such as, low blood counts, nausea and vomiting, and tingling) properly treated.

The best way to ensure the right chemotherapy is to make sure your doctor is giving you one of the treatment regimens recommended in a guideline or recommends you enroll in a clinical research trial.

Harmony: Why did the study take five years to complete?

Dr. Emanuel: Research is always slower than you think. First, we had to develop a survey form and a way of analyzing medical records.

Second, we had to get approval from nearly 100 different hospitals to provide us with information. Third, we had to actually survey more than 2,000 patients.

Fourth, we had to chase down medical records in more than 4,000 doctor's offices. Fifth, we had to input all that data and analyze it. Each one of these tasks takes about a year.

Pearl: Where can I get a copy of my medical records to keep?

Dr. Emanuel: Unfortunately, your medical records are not all together. You probably need to go to the hospital where you were treated and get your hospital record.

Then you need to go to your surgeon, radiation oncologist, medical oncologist, and your primary care doctor and get records from them. That constitutes your complete medical record.

John: What should I do if I don't think I am receiving the best care possible? In what cases do you recommend a second opinion?

Dr. Emanuel: Personally, any time a person is worried that they are not getting the best possible care, they should compare their care with published guidelines (ASCO, NCCN). But I think if you are worried, it is always important to get a second opinion to put your mind at ease.

lynlie: How do you plan to disseminate all of the findings?

Dr. Emanuel: So far, we have briefed ASCO and many practicing oncologists, the Institute of Medicine, policy makers, the NCI, and patient advocacy groups.

Over the next years, we expect to publish the data and make oral presentations at many forums to be sure this study has the maximal impact.

Guest26: What are the top three things a patient needs to do to make sure he or she is getting the highest quality care possible?

Dr. Emanuel: First, get a doctor you are comfortable with and with whom you can speak to easily.

Second, get a guideline for a treatment of your cancer care and read up on your cancer at Cancer.Net and/or ACS. An educated patient is the best patient to ensure quality care.

Third, compare the recommendations your doctors make with the information and guidelines you have found, and ask if there are any deviations from those guidelines.

Fourth, keep a record of the tests and treatments and outcomes you have, so you can provide this information if necessary to doctors in the future.

Moderator: The chat is now ending. Thank you for your thoughtful questions.

We hope this discussion has been valuable, and we regret not being able to answer every question. We want to thank Dr. Emanuel for lending us his time and expertise.

TRANSCRIPTS: The full text of today's chat will be available on Cancer.Net (www.cancer.net) Friday, June 17 by 12:00 PM ET. To receive a copy of the transcript by e-mail, please send a message to contactus@cancer.net.

June Q&A: Visit Cancer.Net (www.cancer.net) for a question-and-answer (Q&A) forum on Skin Cancer and Melanoma.

The featured experts are Charles M. Balch, MD, of the American Society of Clinical Oncology and Johns Hopkins University School of Medicine, and Lynn Schuchter, MD, of the University of Pennsylvania Cancer Center.

The chat room is now closed. Thanks again for joining us.

Last Updated: June 17, 2005