WEDNESDAY, MAY 6, 1998
"What is Quality Care?: A Patient's Perspective"

Dr. Laura J. Esserman began the discussion by stating that she felt the place to start analyzing quality of care is with the patient who has been through the process. She expressed hope that the meeting would yield much information which would have far reaching consequences for making the Breast Care Center a more efficient, more compassionate environment for people with cancer.

Meryl Brod, PhD. made the point that patients may have different goals or perceptions of quality than the physician does. She basically wants the answer to two questions:

1. What makes care "good"?
2. What did you want as a patient that you didn't get?

We will go through all the phases of diagnosis, treatment, and follow up in order to get answers to these questions.

Diagnosis:

First step in diagnosis is the mammogram. Most of the audience agreed that quality care at this stage would involve a gentle, considerate technician who is well trained. Most people would like to have their mammogram read right away so that they don't have an agonizing wait for results. When the technician says that everything is okay, does that mean the quality of the film or the result of the exam?

Many women did not know the difference between a screening mammogram which is done as a routine part of a yearly exam, and a diagnostic mammogram which is done in response to some problem found, like pain or a lump. They would like to have a radiologist present to read the films and give them a result before they leave. They would like this for all scans. This way you can eliminate a great deal of the anxiety caused by false positive tests, and also be able to get a follow-up film immediately. Most women also felt the need for a compassionate companion, this could be a technician or knowledgeable staff person. Dr. Esserman pointed out that although mammography is effective, greater that 70%, it is not perfect and does not eliminate the anquish of a false negative test.

Recalls should be handled compassionately, honestly, and in a time sensitive manner, not by mail. The recaller should have information about your case, and call you promptly. No one wants to wait for weeks to find out whether or not they have a problem.

Biopsy:

Any way waiting time can be shrunk is helpful; immediate biospy should be an option. Coping strategies about how to get through the waiting time did not seem as important as compassion from the physician throughout the process. Continuity of care is important as is more information about treatment options and the process, perhaps in booklet form. Knowing the diagnosis with enough time to evaluate treatment options is important; i.e. shorten the time interval to diagnosis, but lengthen the time interval from diagnosis to treatment. Accurate information should be provided as a standard part of the appointment, perhaps in the form of videotapes which patients can watch while waiting, or beepers might be provided so that patients could access the Resource Center while waiting. In addition, it is equally important that the patient's emotional and psychological needs be met, so a human being available at all times means more than anything.

At The Time Of Initial Diagnosis:

Most people would prefer to receive the diagnosis in person, some would prefer over the phone if it's sooner; but all would like the option as to how to be told given to them at the time of the biopsy.

It is optimal, when you have to see multiple physicians, to have them all in one place. A case manager who could organize your choices would be good--one stop shopping.

In a perfect world, one would like: help navigating insurance, a 24-hour hotline staffed by a physician, a treatment plan, glossary of oncology terms, ability to tape record meetings with the physician.

Surgery (lumpectomy):

Very important that the patient knows who is doing the procedure, surgical or anesthesia. In a teaching hospital, do we have the option of not having a physician-in-training? Patient would want to know the experience of the surgeon.

Information on what to expect after the procedure is finished, downstream consequences of your choice of lumpectomy. Anything which would minimize worry and confusion would be helpful: convenience of parking and making appointments, tours of the facilities, videos on different procedures, support information for spouse/partner, checklist of important questions to ask, etc.

Mastectomy:

After this procedure, patients need more information and preparation for what to expect. Navigators would have a place in this system as well. The medical profession needs to understand that this is new territory for most women, and needs to provide more attention to small details that may be overwhelming for the patient. Attention to childcare issues: how to talk about cancer at different ages, support for people alone or for the rest of the family. Deal with the person--not just the patient.

Chemotherapy:

• Information on expectations, process, and options is needed.
• Patients would like to discuss which agent is best, and get second opinions.
• Getting information on the Internet at the Resource Center, checking on your own results on your own webpage, where people would have access to their records, and have the ability to copy notes.
• Make the waiting more bearable by watching movies or listening to music.
• Information on nutrition, health, exercise, alternative treatments, clinical trials and ongoing research would be valued.

Patients do not want to wait in the waiting room for their appointments. Privacy is an issue. Patients want more information and preparation at the first appointment. (What is: set up, tatoo, simulation) A single sheet summary would be good.

In general patients want client satisfaction (like they get in a hotel), this would include feedback on their cases, information on the health professionals that treat them, a sort of report card on the treatment center.

Follow-Up Appointments:

The goal of the Center is to see patients in a timely manner, but still answer all the patient's questions. Need to find out the kinds of things that people want: counselling for nutrition and exercise, etc., and then develop a program which will fit within the time constraints of the Center. Patients would know how long the appointment is so that they can prioritize their questions.

A new model that is proving to be very successful for follow up appointments provides a group session for half an hour and then small private sessions. The patients seem to get a lot more information, in part because they benefit from the questions and experiences of other patients. Nurse practitioners would be used for what they do best, and the doctors time is utilized more efficiently.

Patients feel like they need to be "on their toes" all the time. They would like to have an advocate who would take on some of this responsibility, especially for groups like the elderly. Someone who would call after the first chemotherapy treatment to make sure the patient is okay, or check in with the patient the day after a procedure, or just to get answers to "niggling" little questions they do not want to bother the physician, nurse practitioner, or office with.