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                         Cancer Survivors' Survey

COMPUTER-BASED SURVEY OF CANCER SURVIVORS

   Jacqueline Fawcett, PhD, RN, FAAN
   Professor
   University of Pennsylvania
   School of Nursing
   Philadelphia, PA 19104-6096

   (215)898-8289

   E-Mail: Fawcett@SON.Nursing.UPenn.Edu

   The willingness of the respondents to share their cancer-related
   experiences is very much appreciated.

   This survey was conducted to identify specific problems experienced by
   cancer survivors, strategies used to cope with those problems, and
   suggestions with regard to what could be done and by whom to help the
   cancer survivor cope more effectively.

   A survey questionnaire was distributed on the Internet via CompuServe,
   Usenet news on the Internet, and via the Wide-World-Web and gopher
   server OncoLink. The respondents were asked to identify the physical,
   emotional, employment, and insurance problems they had experienced as
   a result of having had cancer, what coping strategies they had used,
   what could be done to help them cope better, and who could help them
   cope better.

The Respondents

   Thirty cancer survivors responded to the survey within a 3 month
   period in the spring of 1994. All of the respondents reside in the
   United States, except one British citizen who currently resides in
   Switzerland.

   The respondents ranged in age from 20 to 67 years (average age = 43.7
   years). Sixteen (53%) respondents were male and 14 (47%) were female.
   The vast majority (93%) of the respondents were Caucasian; the
   remainder (7%) were Asian.

   All of the respondents had attended college and almost one- half (45%)
   had completed graduate school. Forty-eight percent of the respondents
   had managerial or professional occupations, 21% had either clerical or
   computer-related occupations, 14% were students, 7% were homemakers,
   and 10% were retired.

   The respondents had received the initial diagnosis of cancer as long
   ago as 1950 (1 respondent) and as recently as within 4 months of
   answering the survey questionnaire (1 respondent). Almost one-third
   (30%) of the other respondents received the cancer diagnosis in the
   1980s and almost two-thirds (60%), in the 1990s. One respondent did
   not report the year of diagnosis. As can be seen in Table 1,
   respondents reported many different cancer diagnoses. Two respondents
   reported having second cancers. One of these respondents had two
   separate tumors of the neck; the other respondent had an initial
   diagnosis of rhabdomyosarcoma with subsequent metastases to the
   spleen, kidney, and liver. Cancer treatment undergone by respondents
   included surgery (83%), chemotherapy (60%), and radiation therapy
   (53%).

  TABLE 1. INITIAL CANCER DIAGNOSES (30 RESPONDENTS)

Type of Cancer      Number of Respondents       Percent
Breast                        6                    20%
Testicular                    4                    13%
Prostate                      3                    10%
Hodgkins                      3                    10%
Multiple Myeloma              3                    10%
Brain                         2                     7%
Acute Lymphocytic Leukemia    1                     3%
Ovarian                       1                     3%
Head/Neck                     1                     3%
Thyroid                       1                     3%
Parathyroid                   1                     3%
Peritoneal                    1                     3%
Renal                         1                     3%
Rhabdomyosarcoma              1                     3%
Not reported                  1                     3%

Problems Experienced by the Respondents

   Eighteen (60%) respondents reported that they had experienced physical
   problems related to the cancer diagnosis and treatment-- 7 (39%) of
   the 18 respondents had one problem; 4 (22%), two problems; 5 (28%),
   three problems, and 2 (11%), four physical problems. The types of
   physical problems experienced are listed in Table 2.

   In addition, 23 (73%) of the respondents reported that they had
   experienced emotional problems related to having had cancer-- 13 (56%)
   of the 23 respondents had one problem; 5 (22%), two problems; and 5
   (22%), three emotional problems. The types of emotional problems
   experienced are listed in Table 3.

  TABLE 2. PHYSICAL PROBLEMS REPORTED BY 18 RESPONDENTS

Problem         Number of Respondents        Percent
Sexual                4                       22%
Urinary               4                       22%
Fatigue               4                       22%
Bowel                 3                       17%
Vision                3                       17%
Loss of hair          3                       17%
Pain                  3                       17%
Neurological          2                       11%
Shortness of breath   2                       11%
Skin                  2                       11%
Balance               2                       11%
Bone                  2                       11%
Hypertension          1                        6%
Voice                 1                        6%
Sleep disturbance     1                        6%
Nausea                1                        6%
Loss of weight        1                        6%
Premature menopause   1                        6%

   Some respondents reported more than one problem.


  TABLE 3. EMOTIONAL PROBLEMS REPORTED BY 23 RESPONDENTS

Inability to plan ahead               1                        4%
Irritability                          1                        4%
Emotional numbness                    1                        4%
Alcoholism                            1                        4%
Want to feel "normal"                 1                        4%

   Some respondents reported more than one problem

   Just 5 (17%) of the 30 respondents experienced employment problems
   related to the cancer diagnosis and treatment. Two of the five
   respondents reported that they had been too ill to work, one had been
   too ill to attend school, one reported the loss of some business, and
   another indicated that difficulty securing initial employment was due
   to a very soft, breathy voice that was a result of the treatment
   received for thyroid cancer during childhood.

   In contrast, 11 (37%) respondents experienced problems with health or
   life insurance. Seven (64%) of the 11 respondents' problems involved
   delays by insurance carriers to pay for treatments. In addition, two
   respondents reported that they were unable to obtain life insurance.

Coping Strategies Used by the Respondents

   Twenty-eight (93%) respondents reported using various strategies to
   cope with being a cancer survivor. The most frequently used strategies
   were:
     * Maintaining a positive outlook
     * Reading about cancer and cancer treatments
     * Talking to other people about being a cancer survivor
     * Remaining angry and fighting the cancer
     * Other frequently used strategies included:
          + Using meditation, visualization, or biofeedback
          + Keeping busy by working hard
          + Taking one day at a time
     * Still other strategies used by the respondents included:
          + Intellectualizing the cancer experience
          + Denying the cancer
          + Crying
          + Laughing and joking
          + Living life to the fullest
          + Scheduling regular medical examinations
          + Examining own body for signs of cancer
          + Writing in a personal journal
          + Changing life priorities
          + Going on special diets
          + Seeking counseling
     * What and Who Could Facilitate More Effective Coping

   All 30 respondents answered the item asking for suggestions about what
   could help them to cope better. Seven (23%) respondents indicated that
   nothing could help, and one (3%) respondent stated, "Don't know." The
   most frequently identified suggestions for more effective coping were:

     * Support groups for specific types of cancer

     * Greater knowledge about the cancer disease process and new
       treatments

     * Support from partner and family members

     * Someone to talk to

   Other suggestions included:

     * Counseling

     * Support from physicians

     * Fighting the cancer

   Twenty-eight (83%) of the 30 respondents answered the item asking them
   to identify who could help them to cope better. Three (11%) of the 28
   respondents stated, "Don't know"; four (14%) stated, "No one"; and two
   (7%) stated, "Myself." People who could help, listed in order of
   frequency cited, were:

     * Physicians
     * Other cancer survivors
     * Someone to talk to
     * Nurses
     * Family members
     * Friends

Discussion

   The survey results indicate that the respondents experienced a broad
   range of physical problems, but that no one type of problem was
   predominant. Furthermore, some respondents noted that the physical
   problems were temporary. For example, surgery for prostate cancer
   resulted in temporary impotence and temporary incontinence. In
   contrast, other respondents indicated that some physical problems were
   permanent. For example, surgery for childhood thyroid cancer resulted
   in a permanent voice change.

   The results also indicate that more respondents experienced emotional
   than physical problems as a result of having had cancer. Although
   several emotional problems were reported, fear of a recurrence of
   cancer was predominant.

   The respondents were not asked to report the intensity of their
   physical and emotional problems. Examination of the actual content of
   their responses, however, revealed that, as might be expected, the
   more recent the cancer diagnosis, the more intense the problems.

   Very few respondents reported employment problems. In fact, to the
   contrary, many respondents noted that their employers had been and
   continued to be very supportive. Insurance problems were, however,
   experienced by more than one-third of the respondents. The reluctance
   of health insurance carriers to pay for cancer treatments created
   considerable frustration for the respondents, who had to "fight the
   system" at a time when they were struggling to fight the cancer and
   reduce external stressors. Clearly, this is an area that must be
   addressed in health care reform.

   The respondents used many different strategies to cope with cancer
   treatment and being a cancer survivor. Examination of the content of
   the responses suggested that the choice of coping strategies is an
   individual matter and that no one strategy is best for all cancer
   survivors.


   The suggestions from the respondents with regard to what could be done
   and by whom to enhance coping clearly indicated that cancer survivors
   want to discuss their experiences with other cancer survivors in
   support groups that are targeted to specific types of cancer.
   Furthermore, the results indicate that cancer survivors benefit from
   and need continued support from their family members, friends,
   physicians, and nurses. Finally, at least the respondents to this
   survey want to learn more about the cancer disease process and
   advances in cancer treatment because they believe that knowledge is
   power.

   The survey respondents obviously represent a select sample of
   well-educated, articulate, computer-literate people. The extent to
   which their responses can be generalized to other cancer survivors
   requires further study. The survey did, however, provide valuable
   information that has enhanced health care professionals' understanding
   about the problems faced by cancer survivors and the strategies they
   use to cope with those problems. Moreover, the survey results should
   alert health care professionals to the need for targeted support
   groups that permit cancer survivors to interact with other survivors
   of the same type of cancer.

Thanks for participating in this survey!

OncoLink can be reached on the Wide-World-Web by:
http://cancer.med.upenn.edu/

[with a tip of our ABLEnews' hat to Bryan Thorp on Carcinoma]

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