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Quality of life valuations of mammography screening

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Abstract

Objective To obtain quality-of-life (QOL) valuations associated with mammography screening and breast cancer treatment that are suitable for use in cost-effectiveness analyses.

Methods Subjects comprised 131 women (age range 50–79 years) randomly sampled from a breast cancer screening program. In an in-person or telephone interview, women rated the QOL impact of 14 clinical scenarios (ranging from mammography to end-of-life care for breast cancer) using a visual analogue scale anchored by death (0) and perfect health/quality of life (100).

Results Women rated the scenarios describing true negative results, false positive results, and routine screening mammography at 80 or above on a scale of 0–100, suggesting that they perceive these states as being close to perfect health. They rated adjuvant chemotherapy (39.7; range 10–90), palliation/end-of-life care (35.8; range 0–100), and recurrence at 1 year (33.0; range 0–95) the lowest, suggesting that these health states are perceived as compromised. Women rated receiving news of a breast cancer diagnosis (true positive) (45.7; range 5–100) and receiving delayed news of a breast cancer diagnosis (false negative) (48.5; range 5–100) as being comparable to undergoing mastectomy (48.3; range 10–100) and radiation therapy (46.2; range 5–100) for breast cancer.

Conclusions These data can be used to update cost analyses of mammography screening that wish to take into account the QOL impact of screening.

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Acknowledgements

The authors thank Philip Bonomi, MD, MS (Rush Cancer Institute, Chicago, IL), Marlene Frost, PhD, RN (Mayo Clinic, Rochester, MN), and William Hollingworth, PhD (University of Washington, Seattle, WA) for reviewing the clinical scenarios, and Terry Bush, PhD, Cassandra Luce, MA, and Christine Mahoney, MA for scheduling and conducting interviews with women.

NIH Funding

This manuscript was developed under NCI/R01 CA106790: Long-term cost-effectiveness of breast cancer screening.

Author information

Authors and Affiliations

  1. Human Development and Family Science, The Ohio State University, 135 Campbell Hall, 1787 Neil Avenue, Columbus, OH, 43210, USA

    Amy E. Bonomi & Elizabeth A. Cannon

  2. Center for Health Studies, Group Health Cooperative, 1730 Minor Avenue, Suite 1600, Seattle, WA, 98101, USA

    Amy E. Bonomi, Denise M. Boudreau, Paul A. Fishman, Evette Ludman, Amy Mohelnitzky & Deb Seger

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  1. Amy E. Bonomi
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  2. Denise M. Boudreau
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  3. Paul A. Fishman
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  4. Evette Ludman
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  5. Amy Mohelnitzky
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  7. Deb Seger
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Corresponding author

Correspondence to Amy E. Bonomi.

Appendix: Clinical scenarios

Appendix: Clinical scenarios

Part II. Quality of life

Now we will begin the main part of the interview. I am going to read several different situations that describe what happens during breast cancer screening, breast cancer diagnosis, and breast cancer treatment, and how being in these situations might affect your health and quality of life.

I realize you may not have had breast cancer and may or may not have had a mammogram, but I would like you to try to imagine yourself in each situation.

Each of the situations was developed based on what an average woman experiences when she has a mammogram or treatment for breast cancer. They do not represent the experience of all women. The treatments we describe do not necessarily reflect the treatments recommended by Group Health Cooperative for women with breast cancer.

After I read each situation, I’ll ask you to imagine yourself in that situation and then ask you to rate your quality of life if you were in that state.

When I ask you to rate your quality of life, I’ll ask you to use a thermometer. One end of the thermometer represents the best possible health and quality of life you could imagine, and the other end represents death. In between are all of the different possible levels of quality of life.

figure a

I will ask you to rate several different situations. You will have the opportunity to go back and change any of your ratings at any given time. We can also review your ratings at the end of the interview and make any changes you’d like.

Do you have any questions before we get started?

Screening

You have a screening mammogram to determine whether you have any abnormalities in your breast. A mammogram is an X-ray taken while your breast is pressed between two flat pieces of plastic and metal. Women over the age of 50 typically receive screening mammograms as a precautionary measure, not because their doctor suspects that they have breast cancer.

Getting a mammogram requires about 2 h including travel and waiting time. For the mammogram, you are asked to remove your clothes from the waist up and during the mammogram you may feel pressure and discomfort in your breasts.

Before the mammogram, you may feel anxious or embarrassed about having the mammogram, and may worry about whether you may have abnormalities in your breast.

It takes a few days to a few weeks to get the results of your mammogram. For some women, the waiting period is one in which she feels more stressed than usual. You may feel especially anxious if you think your mammogram results will show abnormalities in your breast.

Think for a minute about being in the situation I just described. All things considered, on a scale of 0–00 where 0 represents death and 100 represents perfect health and quality of life, how would you rate the quality of your life if you were in that situation?

2a. Screening—true negative (randomly administer true negative and false negative right after baseline screening mammogram scenario)

After 3 weeks of waiting, the results of your screening mammogram arrive in the mail. The results indicate that your breasts appear normal. You may feel relieved to hear that your breasts appear normal. However, receiving your mammogram results could cause you to worry about other health problems you may have. After you receive your test results, you expect that your next screening mammogram will occur in 2 years.

2b. Screening/diagnostic—false negative

After 3 weeks of waiting, your screening mammogram results arrive in the mail. The results indicate that your breasts appear normal. You may feel relieved to hear that the mammogram indicated there is nothing to be concerned about. After you receive your test results, you expect that your next screening mammogram will occur in 2 years.

However, several months after you receive your mammogram results, you feel a lump in your breast. You return to your doctor for a check up and your doctor recommends a diagnostic mammogram and a needle biopsy. The process of getting more tests occurs over a period of up to 2 weeks and requires you to make two to three trips to the doctor’s office. A diagnostic mammogram is like a screening mammogram, and is usually done if a doctor suspects a problem with a woman’s breast. A needle biopsy involves removing a small amount of your breast tissue with a needle. The needle biopsy does not involve surgery and is done right in the medical center. Although a needle is involved, the needle biopsy does not typically cause pain.

The results of your diagnostic mammogram and needle biopsy come back “positive.” Your doctor tells you that you have breast cancer and provides information about surgical options for the initial treatment of your breast cancer. In response to this news, you may decide to get a second opinion or advice from another doctor and may feel stress about the decisions you have to make.

Having been told that you have breast cancer, you may feel sad, afraid, angry (“why me”?), and nervous about what the future holds for you. You may feel particularly upset that the screening mammogram you had a few months ago did not find your breast cancer. During this time, you may be unable to concentrate on your usual activities and may be preoccupied with what breast cancer treatment might be like and whether you might die from breast cancer. Being diagnosed with breast cancer, particularly under the circumstance of discovering that the mammogram did not detect your breast cancer initially, could affect your relationships with your family and friends in a positive or negative way.

2c. Diagnostic phase/uncertain test results

Now I would like you to imagine that you’ve had a screening mammogram, the type of mammogram you usually receive every 2 years. When you have the screening mammogram, you are told that you have an abnormality in your breast and that you must have additional tests to determine if you have breast cancer. The process of getting more tests occurs over a period of up to 2 weeks and requires you to make two to three trips to the doctor’s office.

Your doctor recommends having a diagnostic mammogram to look at additional views of your breast. If the mammogram is still concerning an ultrasound and possibly a needle biopsy will be done. A diagnostic mammogram is like a screening mammogram, and is usually done if a doctor suspects a problem with a woman’s breast.

Like a mammogram, an ultrasound also takes pictures of your breasts, but may not put as much pressure on your breasts as a mammogram. For the ultrasound, you remove your clothes from the waist up and gel is smoothed on the skin of your breast area so that the ultrasound can move smoothly across your skin. The needle biopsy involves removing a small amount of your breast tissue with a needle. The needle biopsy does not involve surgery and is done at the medical center. Although a needle is involved, the needle biopsy does not typically cause pain.

When you are first told you need additional tests to determine if you have breast cancer, you may feel anxious about having the tests. While waiting for your test results, you may also feel nervous, experience fear that you have breast cancer, and may be unable to concentrate on your usual activities. You may also feel irritable and depressed, less able to work, and you may think and worry about dying if you are told you have breast cancer. Waiting for your results could put extra strain on your relationships with family and friends.

2d. True positive (randomly administer true positive and false positive right after diagnostic mammogram scenario)

The results of your diagnostic (additional) mammogram, ultrasound and needle biopsy come back “positive”. Your doctor tells you that you have breast cancer and provides information about surgical options for the initial treatment of your breast cancer. In response to this news, you may decide to get a second opinion or advice from another doctor about your breast cancer and may feel stress about the decisions you have to make.

Having been told that you have breast cancer, you may feel sad, afraid, angry (“why me”?), and nervous about what the future holds for you. These feelings may last for a period of approximately 2 weeks, or until you undergo surgery. Also during this time, you may be unable to concentrate on your usual activities and may be preoccupied with what breast cancer treatment might be like and whether you might die from breast cancer. You begin to think about the implications of your diagnosis for your family and friends. Being diagnosed with breast cancer could affect your relationships with your family and friends in a positive or negative way.

2e. False positive

The results of your diagnostic (additional) mammogram, ultrasound, and needle biopsy come back “negative”. Your doctor tells you that you do not have breast cancer.

Your doctor asks you to return for another mammogram in 1 year to determine if there are any changes in your breast. You might feel relief having been told that you do not have breast cancer. However, you may also feel irritated that your initial test results indicated that there was something to be concerned about, and that you needed to undergo additional tests that may have been uncomfortable for you. From this point on, you may feel more anxious than usual about getting a mammogram and may be nervous about undergoing other medical tests. On the other hand, you may be more eager to address ongoing health problems you have.

3a. Lumpectomy

Based on the results of your mammogram and a needle biopsy, you are told by your doctor that you have breast cancer in one of your breasts. You have surgery to remove the area of your breast with cancer, and you may also have some lymph nodes removed. Not all of your breast is removed, only the part that has cancer cells.

Surgery has several consequences for you. After surgery, your breast may be slightly disfigured, there is a small chance of developing an infection in your wound/scar, and you may experience mild pain near your scar and chest area for a few weeks. You may also experience some numbness in the area of your scar and underneath the area where the lymph node or nodes were removed. There is also a small chance that your arm and hand could become swollen and painful, shortly after surgery and up to 6 months after, making it more difficult to perform some tasks.

You require a few weeks to prepare and recover from surgery. During this time, you feel more tired than usual, and you may not be able to or lose interest in performing your usual activities. You may feel anxious/nervous, afraid, angry (“why me?”), and embarrassed or ashamed of your body. Emotionally you may still be trying to come to terms with having breast cancer. Having surgery could have positive or negative effects on your relationships with friends and family. For example, your desire to have sexual relations with your partner may decrease.

3b. Mastectomy

Based on the results of your mammogram and needle biopsy, you are told by your doctor that you have breast cancer in one of your breasts. You have surgery to remove your whole breast and some of the lymph nodes under your arm.

Surgery has several consequences for you. You may have some pain in your breast and chest area and there is a small chance of developing an infection in your wound/scar. The pain may last for a few weeks. You may also experience some numbness in the area of your scar and underneath the area where the lymph nodes were removed. After surgery, if you elected to not have breast reconstruction (cosmetic surgery), your doctor gives you the option of wearing an artificial breast. Additionally, women who had breast reconstruction may have numbness in the reconstructed breast. Finally, there is a small chance that your arm and hand could become swollen and painful, shortly after surgery and up to 6 months after, making it difficult to perform some tasks.

You require a few weeks to prepare and recover from surgery. You may feel more tired than usual, and not be able to or lose interest in performing your usual activities. You may feel anxious/nervous, afraid, angry (“why me?”), and embarrassed or ashamed of your body. In particular, you may not like the sight of your surgical scar. Emotionally you may still be coming to terms with having breast cancer. Having surgery could have positive or negative effects on your relationships with friends and family. For example, your desire to have sexual relations with your intimate partner may decrease.

Adjuvant radiation

Based on the results of your mammogram and a needle biopsy, you are told by your doctor that you have breast cancer in one of your breasts. You elected to have surgery that only removed the area of the breast with cancer rather than the entire breast. This choice requires approximately 6 weeks of radiation therapy (5 days per week) after surgery that you will need to go to the medical center to receive. Radiation involves high-energy rays that come from a machine and is used to destroy cancer cells.

Radiation causes redness and itchiness in the area of your skin that is radiated and you may feel tired, like you can’t get enough sleep. These side effects generally go away in 6 weeks to a few months after you complete radiation. There may be some long term changes in the color (darkening) or texture of your skin in the area that has received radiation.

In addition to physical symptoms associated with radiation, you may find that the radiation schedule (going to the medical center 5 days per week for approximately 6 weeks) and fatigue caused by the radiation disrupt your personal, social and work life.

Adjuvant chemotherapy

Based on the results of your mammogram and a needle biopsy, you are told by your doctor that you have breast cancer in one of your breasts. You have 4 months of chemotherapy once every 3–4 weeks. Chemotherapy is a type of anti-cancer drug that is usually given through a needle into a vein in your arm.

Chemotherapy has several consequences for you. You lose some or all of your hair, and you may feel mildly to moderately nauseated the first few days after treatment. The nausea and chemotherapy itself may cause you to lose your appetite. You will likely feel tired, and there is a chance that you will develop painful mouth sores that make it difficult to eat, drink and swallow. You may also experience diarrhea, constipation, and changes in your menstrual cycle. Chemotherapy may lower your white blood cell count, or your body’s ability to fight off infection. There is a small chance that low cell counts or an infection could require you to be hospitalized for several days. Once you finish chemotherapy, your hair will grow back but may be a different color or texture.

During your chemotherapy, you may need to reduce the amount of time you work and you may not be able to perform your usual activities. You may lose interest in the things you enjoy doing and may not feel connected to and supported by your friends and family. You may also feel irritable and anxious, and lose interest in having sexual relations with your partner.

Adjuvant antiestrogen therapy

You have had initial surgery and radiation or chemotherapy for your breast cancer. Your doctor now recommends antiestrogen therapy, which includes drugs such as tamoxifen and is administered orally (i.e., you take a pill by mouth). Antiestrogen therapy is a common treatment for breast cancer after surgery, chemotherapy and radiation, and is used to slow the growth of cancer cells. It is usually recommended for 5 years, but may be stopped short of 5 years if your breast cancer returns.

Antiestrogen therapy has several consequences for you. You may experience hot flashes and irregular menstrual periods, and vaginal irritation and discharge. Additionally, you may have mood swings. During the period when you receive antiestrogen therapy, you continue adjusting to living with breast cancer. For example, you may worry about your breast cancer returning, and your life priorities may be different.

Disease-free period

You have already had surgery, radiation, and chemotherapy for breast cancer. It is approximately 1 year later and you visit your doctor for your check up. Your doctor tells you there is no evidence of breast cancer in your body. In other words, you no longer have breast cancer. Your doctor recommends getting an annual (yearly) mammogram and an annual office visit, and recommends continuing your antiestrogen treatment with tamoxifen.

You are relieved to hear that your doctor does not see breast cancer. At this time in your life, you feel good physically. You are able to do all of the things you usually do, like working, socializing with friends and family, gardening, etc.

Emotionally, you are in a period of appreciating and valuing your life. You may explore getting involved in new things (e.g., taking up new hobbies, going on a trip you’ve always wanted to, etc.). However, although you are excited about the new activities you may be undertaking, you may feel pessimistic and unhappy from time to time and worry about your breast cancer coming back. Sometimes you feel sad and alone, and worry about what life holds for you in the future. You may feel unattractive and dissatisfied with your body (your breast area in particular), even though you had cosmetic surgery. Your relationships with family members and friends may have changed (for better or worse) from the time before you had breast cancer. For example, you may have less interest in having sexual relations with your partner than you had before you got cancer.

Recurrence and maintenance chemotherapy

You have already had surgery, radiation and chemotherapy for breast cancer. One year later, your doctor tells you that your breast cancer has returned. In other words, the initial surgery and radiation and chemotherapy did not cure your cancer. You have an additional 4 months of chemotherapy once every 3–4 weeks and radiation therapy 5 days a week for 6 weeks. Chemotherapy is a type of anti-cancer drug that is given through a vein in your arm, and radiation involves high-energy rays that come from a machine and is used to destroy cancer cells.

Chemotherapy has several consequences for you. You lose some or all of your hair, and you may feel mildly to moderately nauseated for a few days after treatment. If the chemotherapy causes nausea for you, you may also experience nausea prior to actually receiving your next treatment...in anticipation of how you will feel during chemotherapy. Because of your nausea and possible vomiting and the chemotherapy itself, you lose your appetite. You also feel tired and may experience diarrhea or constipation. You may also develop painful mouth sores that make it difficult to eat, drink and swallow. Chemotherapy may lower your white blood cell count, or your body’s ability to fight off infection. There is a small chance that low cell counts or an infection could require you to be hospitalized for several days.

Radiation causes redness and itchiness in the area of your skin that is radiated and you may feel tired, like you can’t get enough sleep. There may be long term changes in the color (darkening) or texture of your skin in the area that has received radiation.

During chemotherapy and radiation, you may not be able to do or lose interest in doing your usual activities, and may need to decrease the amount you work. You may not feel connected to and supported by your friends and family. You may also feel irritable and anxious, and worry about what life holds for you in the future.

Palliative therapy

You were diagnosed with breast cancer 2 years ago. You have had surgery, radiation, several types of chemotherapy, and antiestrogen therapy to try to control your breast cancer. Your doctor tells you none of the treatments worked and that your breast cancer has spread to your lungs and bone. Essentially, there is no other treatment for your breast cancer. Your doctor estimates that you have approximately 3 months to live.

During the last 3 months of your life, the primary treatment includes medications for your pain and other symptoms you may experience. In spite of these treatments, you experience chronic, continuous pain and may have some difficultly breathing. You are completely unable to work outside the home or engage in your usual activities, and sleep a good portion of the day. Your activities are focused mainly on getting your affairs in order for your death, including spending time with family and friends, and making arrangements for inheritances, selling your house, etc.

For some women, this is a period in which they may feel especially powerless, particularly as they become more dependent on others to help them perform usual activities of living (e.g., bathing). Some women become depressed and angry, and may lose interest in living altogether. Although this may be a difficult time, you may find it comforting and valuable to connect with family and friends and come to terms and peace with your own death.

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Bonomi, A.E., Boudreau, D.M., Fishman, P.A. et al. Quality of life valuations of mammography screening. Qual Life Res 17, 801–814 (2008). https://doi.org/10.1007/s11136-008-9353-2

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