Motivations and influences on the use of complementary medicine in patients with localized prostate cancer treated with curative intent: results of a pilot study

Authors


D. Theodorescu, Department of Urology, Box422, University of Virginia Health Sciences Center, Charlottesville, Virginia, 22908, USA. e-mail: theodorescu@virginia.edu

Abstract

OBJECTIVES

To analyse descriptively the use of complementary medicine (CM) by patients with localized prostate cancer treated with curative intent, assessing the major influences on their choice to use CM, and the major critics and advocates of CM.

PATIENTS AND METHODS

From January 1997 to June 2000, 351 men with stage T1c-T3 adenocarcinoma of the prostate were treated with either radical prostatectomy (RP) or brachytherapy. On the final date all patients were mailed a questionnaire relating to their use of CM and the results analysed cross-sectionally.

RESULTS

In all, 238 (67.8%) patients returned the questionnaires, of whom 37% acknowledged using some type of CM, with a similar overall use of CM among those treated with RP or brachytherapy. Of these, 43% began using CM before and 32% after starting conventional treatment, and most indicated they would never discontinue these therapies. The most common reason for using CM was the patient's impression that it made them feel better, and secondarily that they felt it helped to cure their cancer. Physicians were the most common source of information about CM, with twice as many patients identifying physicians as being advocates rather than critics of CM. Many patients felt their urologist or radiation oncologist was neutral or chose not to discuss CM. However, when these physicians discussed CM, more patients felt that they encouraged rather than discouraged the use of CM.

CONCLUSIONS

These data on the motivations for patient choices relating to CM are novel; the sources of information, both positive and negative, that patients find useful in their decision to use these therapies were explored. Interestingly, physicians were generally supportive of the use of such approaches.

INTRODUCTION

Patients with chronic illnesses are increasingly seeking therapy through complementary medicine (CM) approaches. In prostate cancer, studies have shown that up to 43% of patients with clinically localized prostate cancer treated with curative intent used at least one form of CM [1]. This study motivated the present assessment of the period of this use, and the major motivational aspects and sources of information involved in the decision. Interestingly, CM therapies are rarely discussed within the doctor-patient relationship. One study found that 72% of adults who used CM did not discuss the issue with their physician [2]. This is very significant, as some of these treatments have side-effects or may interfere with conventional management. Physicians often avoid this topic through ignorance of the subject or lack of significant objective data about CM [3]. However, patients are often remiss in raising the subject because they fear hostility from the allopathic medical community, the risk of humiliation, or belief that their doctor will not be knowledgeable about CM [4]. Thus, another goal of the present study was to gather objective data about patients’ opinions of the physician's reaction to the use of CM in those treated for localized prostate cancer with curative intent, as this has not been assessed before. In addition, the present patient cohort differs from those in previous studies because the patients chose ‘state-of-the-art’ conventional medical care for their cancer, as recommended by their physicians, and which has a high likelihood of cure [5,6]. Thus we sought to distinguish the main critics and advocates of CM, and to categorize possible differences between various medical specialities in their reactions to the use of CM among patients with prostate cancer.

Many patients have high expectations for their alternative medicines; most who use CM expect it to improve the quality of their life,> 70% expect it to boost their immune system, and 62% believe that it will prolong their life. Up to 37% of CM users anticipate that the therapy will cure their disorder [7]. Lazar and O’Connor [4] reported several factors influencing patients’ use of alternative or CM, including: the attempt to control side-effects, the need to be involved and to have some control over their therapy, the desire to avoid the toxicity of conventional medicines, and the diagnosis of a disease for which proper treatment is lacking. Those who choose not to use CM do so for a variety of reasons including satisfying results from conventional medicine and confidence in medical professionals [8]. Thus, there is currently limited information about the reasons patients choose to use or not use CM, but to our knowledge there are no studies which address this issue specifically among patients with prostate cancer. Also, to our knowledge, there are no current data on the sources of information that are most commonly used by patients when making a decision about CM. Therefore, we sought not only to gather further information about the reasons why patients choose CM but also to identify the sources of information most often used by those making a decision about CM. A further aim was to establish the period when these patients began using CM after their diagnosis.

PATIENTS AND METHODS

Between January 1997 and June 2000, 351 men with clinical stage T1c-T3 [9] prostate carcinoma underwent either radical prostatectomy (RP) or brachytherapy with or without external beam radiotherapy (EBRT) at one university centre. In all, 238 patients responded to a questionnaire, of whom 105 (44.1%) underwent RP, 81 (34.0%) brachytherapy plus EBRT and 52 (21.9%) brachytherapy alone; the mean (sd) age of the patients was 62 (7), 65 (6) and 71 (6) years, respectively. After treatment patients were followed every 6 months with a physical examination and PSA measurement. Biochemical failure was defined as a PSA level of ≥ 0.2 ng/mL in patients undergoing surgery or ≥ 1 ng/mL for patients receiving radiation therapy.

INSTRUMENTS

In June 2000, a questionnaire was mailed (first class) with a covering letter stating the goals of the project, with approval from the institutional review board. No financial reimbursement was given to the patients for completing the questionnaire. The questionnaire comprised an extensive survey about CM use (Appendix 1); patients could choose among multiple-choice answers, and write in freehand the answer if an appropriate choice was not given.

Freehand answers to questions were examined by two of the authors and if the data were essentially analogous to a defined selection in the multiple-choice question, then the score was re-assigned appropriately. If not, new categories were derived. For each question, categories were also combined with minimal responses into an ‘other category’. For the purposes of the study, all questions beyond question 1 (Appendix 1) were analysed only for those respondents who indicated that they used at least one form of CM. Demographic measurements are summarized by the mean (sem); there were no statistical comparisons because the study was purely descriptive.

RESULTS

Of 238 patients with clinically localized prostate carcinoma who responded, 89 (37.4%) had used at least one form of CM within the previous month. There were no obvious differences in the response rates to the questionnaires among the three therapeutic groups. Rates of use were similar were seen among the treatment methods, with 37%, 38.1% and 36.5% using CM in the RP, brachytherapy + EBRT and brachytherapy-alone groups, respectively. There was no association between use of CM and biochemical failure. Vitamins were the most frequently used form of CM, by 84 patients (35.3%), with vitamin E the most popular supplement, used by 53 patients (22.3%), with multivitamins used by 52 respondents (21.8%). Herbal therapies were used by 29 of the 238 respondents (12.2%). Of the herbal therapies, lycopene (a tomato extract) and saw palmetto were the most popular, each used by eight patients (3.4%). Of the 238 respondents, 29 (12.2%) acknowledged making a dietary change of some sort.

Patients using CM were asked to define the period in which they started this therapy, and were allowed to circle all answers that applied to their situation. Of the 89 patients using CM, 38 (44%) indicated that some sort of CM had been initiated before surgery or radiation, while 28 (32%) indicated that at least one form of CM had been initiated after starting treatment; 27 (30%) did not answer this question. Patients who were using CM were asked to define the period for which they planned to continue using this therapy; 57 (64%) replied that they planned never to quit their current CM, while five (6%) replied that they planned to stop when their symptoms improved; two patients (2%) answered ‘other’. Twenty-five patients (28%) did not answer this question.

FACTORS INVOLVED IN THE DECISION TO USE CM

Patients were asked why they used CM and of the 89 using CM, 28 (32%) answered that it made them feel better, while 21 (24%) believed that it improved the treatment or cure of their cancer. Fifteen (17%) believed that it slowed the growth of their cancer and 11 (12%) that this therapy relieved the side-effects of their conventional therapy. Another six patients (7%) responded that they used CM because of medical or scientific information; 32 (36%) did not answer this question.

Responses from patients who used CM were analysed to determine the sources of information that were important in their decision. Of these 89 respondents, 39 (44%) replied that a physician had been a major source of information about CM choices. Media such as television, magazines or radio was indicated as an important source of information to 27 patients (30%) while another 22 (25%) felt that friends and family had provided valuable input on the topic. Finally, 13 respondents (15%) indicated that fellow cancer patients or support groups had provided them with significant information in their decision on CM; 25 patients (28%) did not answer this question.

Of those patients using CM, 23 (26%) claimed that their physician was the greatest advocate of this approach. This was followed closely by 15 respondents (17%) who felt that there was no major advocate and another 15 (17%) who chose friends and family. Fourteen patients (16%) felt that media such as television, print or radio was a major advocate and seven (8%) indicated fellow cancer patients as the major advocates of CM. Six respondents (7%) chose web sites and seven (8%) other individuals; 19 (21%) did not answer the question.

Patients were then asked to identify the greatest critics of CM; of those using CM, 48 (54%) indicated that there was no major critic, and other popular responses were physicians or medical information in 12 (14%), friends and family in four (5%), and television, radio or print media in two (2%). Twenty-three patients (26%) did not answer this question.

Patients were asked to rate their urologist's or radiotherapist's opinion of CM. Of the 89 patients using CM, 31 (35%) answered that their urologist had no strong feelings on the issue and had left the decision to them. Many urologists never raised the issue with their patients, as indicated by 12 patients (14%) who answered that the topic had never been discussed. Finally, 25 respondents (28%) indicated that their urologist encouraged the use of CM, while five (6%) discouraged it; 18 patients (20%) did not answer this question.

Fifty-nine patients had received both radiation and used CM; 12 (20%) answered that their radiation doctor had no strong feelings on the issue and had left the decision to them. As with urologists, many radiotherapists never raised the issue with their patients, as indicated by 10 patients (17%) who answered that the topic had never been discussed. Finally, nine respondents (15%) indicated that their radiation oncologist encouraged the use of CM, while three (5%) discouraged their use, proportions slightly different than for the urologists. Twenty-six patients (29%) did not answer this question.

DISCUSSION

From this study, 37% of patients treated for localized prostate cancer reported using some type of CM; this rate is similar to that in previous studies, where 43% of patients with prostate cancer used CM [1], and in surveys of patients with cancer, which reported use of these therapies in 24–83%[3,7,10]. The present study indicated that many patients began using CM before conventional treatment. This may have significant clinical implications in view of the potentially detrimental effects of antioxidants on the efficacy of concomitant radiotherapy. Therefore, because of this and other potential interactions, we advise all patients to desist using all CM during the conventional phases of their treatment.

Patients with cancer use CM more often than do control groups [11,12]; why do these patients seek complementary care when they are currently receiving proven treatment, and what do they expect to obtain from this complementary care? Among patients with breast cancer the major reason for using CM was to strengthen the immune system (73%) [13], while other studies indicated that patients with cancer believe that CM improves their quality of life, by helping them cope with stress, and still other patients desire to ‘leave no stone unturned’ in their fight against cancer [10,14]. In the present study, the most popular reason for using CM among patients with prostate cancer was that they felt it made them feel better, followed by the belief that this type of therapy would enhance the chances for cure of their cancer. Thus, many of these patients had high expectations of their CM and indeed most respondents indicated that they planned never to stop using these therapies.

With such expectations it is important to determine where patients are obtaining information about CM. The present patients indicated that the most common source of information was indeed a physician, which is surprising considering that many patients in this and other studies reported that they have never discussed CM with their physician. It is also surprising considering the seemingly vast popularity of these types of therapy in the media and general population. Previous studies reported that physicians are hostile to CM or that patients perceive hostility toward such therapies from their physician [4,15,16]. However, among the present respondents, the most common opinion of those patients who had discussed CM with their urologist reflected neutrality on the part of the physician, allowing the patient to decide the best course of action. Of those patients who felt that their urologist was biased on the issue, five times as many felt that the urologist encouraged rather than discouraged the use of CM. Furthermore, when patients were specifically asked to identify advocates and critics of CM, twice as many identified conventional medicine and science as an advocate rather than a critic. However, these numbers are based on only those respondents using CM and may not reflect the patients as a whole. It would also be interesting to survey the doctors who treated these patients to obtain their views about CM. This type of survey should also include a more specific definition of what complementary or alternative forms of healthcare entail, and should be applied over a wider patient base. While the present data might suggest a more open-minded view of CM by medical professionals than previously reported, importantly the results are limited to patients treated for prostate cancer, who may have experienced a different response from physicians than patients using other specialities.

In conclusion, this study suggests that CM use is prevalent in patients treated with curative intent for localized prostate cancer, and presents new data about the period for starting and finishing CM therapies. The motivations for patient choices relating to CM use were defined and sources of information identified, both positive and negative, that patients find most useful in their decision about CM. We hope that these findings will offer a more complete understanding of CM use in patients treated for prostate cancer with curative intent, and help to optimize their care by providing insights into their patterns of use and motivations.

ACKNOWLEDGEMENTS

This work was supported by the Training Program in Complementary and Alternative Medicine Research 1-T32 AT00052-01 awarded by the National Center for Complementary and Alternative Medicine (NCCAM), National Institutes of Health to the University of Virginia.

Abbreviations
CM

complementary medicine

RP

radical prostatectomy

EBRT

external beam radiotherapy.

APPENDIX 1

The mailed questionnaire:

Some patients with your disease use complementary or alternative forms of health care.

1. In the past month have you used any of the following to treat either your cancer or the side-effects caused by your cancer treatments?

Please circle ALL that apply and provide the additional information requested.

1. None

2. Vitamins. Please list ALL the vitamins are you taking

3. Herbal medicines. Please list ALL the herbal medicines are you taking

4. Dietary therapy. Please explain

5. Other complementary or alternative forms of health care. Please explain

2. Why do you use complementary or alternative forms of health care? Please circle ALL that apply to you

1. Makes you feel better

2. Relieves side-effects of the treatment

3. Believe it helps in curing/getting rid of the cancer

4. Believes it slows down the growth of the cancer

5. Other reasons: Please explain

3. Do you feel that complementary or alternative forms of health care have offered you an advantage in your fight against cancer? Please circle ONLY ONE that applies to you

1. Yes

2. Maybe

3. No

4. No but it made me feel better

5. Other comments: Please explain

4. When did you start using complementary or alternative forms of health care? Please circle ALL that apply to you

1. Before starting the doctor prescribed treatment

2. After starting the doctor prescribed treatment

3. Other time: Please explain

5. When are you planning to stop using complementary or alternative forms of health care? Please circle ONLY ONE that applies to you

1. Never

2. After my symptoms get better

3. Other time interval: Please explain by telling us when and why you would stop

6. Where did you hear about complementary or alternative forms of health care? Please circle ALL that apply to you

1. Your urologist

2. Your family doctor

3. Your radiation doctor

4. Your medical oncologist

5. The nurses

6. Your spouse

7. Friends and neighbours

8. Fellow patients

9. Television or radio

10. Magazines or other print media

11. Computer web sites or newsgroups

12. Cancer support groups

13. Other individuals: Please explain

7. Who would you say is/are the biggest ADVOCATE(S) for using complementary or alternative forms of health care? Please circle ONLY ONE that applies to you

1. Nobody

2. Your urologist

3. Your family doctor

4. Your radiation doctor

5. Your medical oncologist

6. The nurses

7. Your spouse

8. Friends and neighbours

9. Fellow patients

10. Television or radio

11. Magazines or other print media

12. Computer web sites or newsgroups Cancer support groups

13. Other individuals: Please explain

8. Who would you say is/are the biggest CRITIC(S) for using complementary or alternative forms of health care? Please circle ONLY ONE that applies to you

1. Nobody

2. Your urologist

3. Your family doctor

4. Your radiation doctor

5. Your medical oncologist

6. The nurses

7. Your spouse

8. Friends and neighbours

9. Fellow patients

10. Television or radio

11. Magazines or other print media

12. Computer web sites or newsgroups

13. Cancer support groups

14. Other individuals: Please explain

9. How do you think your UROLOGIST feels about complementary or alternative forms of health care? Please circle ALL that apply to you

1. Encouraging you to take it

2. Discouraging you to take it

3. Feels its entirely up to you, has no strong feelings about it

4. Warned you about the possible side-effects of some of the forms of treatment

5. Warned you that some of the complementary or alternative forms of treatment may interfere with your regular treatments

6. Other comments: Please explain

10. How do you think your radiation doctor feels about complementary or alternative forms of health care? Please circle ALL that apply to you

1. Encouraging you to take it

2. Discouraging you to take it

3. Feels its entirely up to you, has no strong feelings about it

4. Warned you about the possible side-effects of some of the forms of treatment

5. Warned you that some of the complementary or alternative forms of treatment may interfere with your regular treatments

6. Other comments: Please explain

Ancillary