Study Uncovers Patient/Physician Communication Gaps

November 1, 1995

NEW YORK-A new study by Louis Harris and Associates points to serious gaps between what doctors treating prostate cancer say they tell their patients and what prostate cancer patients report they have heard. A panel of experts at a press conference called to present the findings agreed that these communication gaps must be repaired if further progress is to be made in fighting what they called this "male epidemic."

NEW YORK-A new study by Louis Harris and Associates points toserious gaps between what doctors treating prostate cancer saythey tell their patients and what prostate cancer patients reportthey have heard. A panel of experts at a press conference calledto present the findings agreed that these communication gaps mustbe repaired if further progress is to be made in fighting whatthey called this "male epidemic."

With new and more effective treatment options available for evenadvanced disease, the panelists said, it is all the more importantthat patients be well informed and able to actively participatein decisions about their care.

The Harris survey was conducted on behalf of Us Too! International,a prostate cancer support group, and funded by Schering Oncology/Biotech.The survey questioned 1,000 prostate cancer patients, all membersof Us Too!, and 200 urologists who treat prostate cancer. Thefocus was on attitudes, awareness, and relationships related totreatment of the disease.

Louis Harris' executive vice president, Robert Leitman, acknowledgedthat the patients surveyed were, by virtue of membership in asupport group, more active and informed than a more general patientpopulation. Nonetheless, he reported a worrying disparity in answersgiven by physicians and patients in areas ranging from patientpriorities to information about the efficacy, costs, and sideeffects of available treatment options.

Differing Perspectives

Among the survey findings:

  • Of the doctors polled, 96% believe that most patients feelsufficiently informed to make treatment decisions, whereas only82% of the responding patients said they felt sufficiently informed,and only 63% said they were very satisfied with the discussionthey had about treatment options.
  • Of the surveyed physicians, 99% reported discussing treatmentoptions, whereas 15% of patients said their doctors had not doneso.
  • Perhaps most dramatically, 100% of the surveyed physicianssaid they discussed the side effects of various treatments andhow treatments might affect the patient's quality of life, andasked patients their preference for treatment, but only 84% ofpatients reported being told about side effects, and 70% aboutquality of life issues; 80% said they were asked about their treatmentpreference.

Perceptions of patient priorities also varied widely between patientsand physicians. For patients, the most important considerationwas preserving quality of life, with survival a close second,whereas the doctors believed that in the early stages of the disease,patients' primary concerns are survival and cure, and in the mostadvanced stages, they are more concerned with survival and qualityof life.

Members of the panel agreed that the survey points to the needfor self-examination among physicians treating prostate cancer.Of particular urgency is a rethinking of how and when patientsshould be told about treatment options and such related issuesas side effects and cost. The poll found that nine out of 10 prostatecancer patients rely on their doctor for information about theircondition, underscoring the importance of clear and effectivecommunication.

Marc Garnick, MD, associate clinical professor of medicine, HarvardMedical School, said that the results of the poll make clear theneed for public education for doctors as well as patients. Furthermore,he said, "the doctor-patient relationship simply must bestrengthened, particularly at a time when a patient is emotionallydevastated by the news he is being given. Under those circumstances,it may be very hard for him to hear what the doctor has to say.Still, it is up to doctors to tell their patients everything thereis to know, and to make sure that they hear and understand it."

Dr. Garnick said there is a need for more and better core educationalmaterials for patients to take home and study after the initialshock has passed. [See "African -Americans Are Target of Prostate Cancer Education Efforts".]He also recommended education in active listening for physicians,as well as an overall improvement in communication skills.

E. David Crawford, MD, professor and chairman of the Divisionof Urology, University of Colorado Health Sciences Center, andchairman of the Prostate Cancer Educational Council, suggestedtaping the meeting at which options are discussed, so the patientcan listen to it at home, with an invitation to return with questions.

Dr. Garnick urged physicians to minimize their personal biasesfor specific therapeutic approaches. Rather, the patient shouldbe informed about all scientific studies, and given informationabout efficacy, cost, and side effects of all available options.

Patients Want Aggressive Therapy

Nelson N. Stone, MD, associate professor of Urology, Mount SinaiHospital and School of Medicine, voiced his concerns about findingsin the survey suggesting that most patients want the most aggressivetreatment available, yet many physicians do not discuss completehormone therapy (an antiandrogen used in combination with orchiectomyor an LHRH agonist). Despite the fact that complete hormone therapyhas been shown to extend survival in stage D prostate cancer,its high cost is a factor in discouraging doctors from offeringit, Dr. Stone said.

Flutamide (Eulexin), for example, which typically costs about$300 a month, is not covered by most insurers, though injectableLHRH agonists are generally reimbursable.

Noting the established superiority of complete hormone therapyover mono-therapy, Dr. Stone urged physicians not to cave in onthe cost issue without exploring all possibilities. In the short-term,he noted, some pharmaceutical manufacturers have programs to makethe drugs available at reduced or no cost to indigent patients.In the longer term, he believes an informed public will exertpressure for change on both private insurers and public healthpolicy makers.

Misunderstanding PSA

Although the survey concerned only men who had already been diagnosedwith prostate malignancy, Dr. Crawford stressed the importanceof clearer communication with everyone at risk for developingprostate cancer.

Applauding efforts to increase the numbers of men receiving annualscreenings, he noted, nonetheless, that large numbers of men over40 do not see a doctor regularly; and of those who do, nearlyhalf neither ask for nor receive digital rectal examination (DRE)and/or prostate-specific antigen (PSA) testing.

Furthermore, he stated, there is still much inaccurate and misleadinginformation regarding PSA levels. He mentioned the popularly held,but incorrect, notion that vigorous exercise raises PSA levels,warning that any man with elevated PSA, regardless of how activehe is, should be further evaluated.

The public is also generally unaware that the cutoffs for PSAlevel vary with age, and that the oft-mentioned cutoff of 4 ng/mLapplies to men aged 60 years, whereas the cutoff for a 40-year-oldman is 2 ng/mL (see figure).