Survey Of Patients Referred To a University Cancer Center For Benign Hematology: Quality Measures and Patient Understanding

Traditionally, benign blood disorders are being evaluated and managed by hematologists who are also trained in oncology. Many of these physicians have their clinics located in Cancer Centers. Based on our clinical observations, the term “Cancer Center” is misleading to many benign hematology patients and it may affect their perception of their disease and/or reason for referral. There are currently no studies investigating patient understanding of benign hematology, the impact of a referral to a cancer center on a patients' well being or their understanding of a referral- therefore we designed this survey to explore those issues.

At West Virginia University/Mary Babb Randolph Cancer Center we drafted a survey. This IRB approved, anonymous and voluntary survey included twenty-eight questions that abstracted patient data that included: age, gender, race, level of education, understanding of reason for referral, knowledge of basic training aspects of hematologists, and multiple questions on stress and the impact of emotional well-being of a referral to the cancer center. Multiple-choice questions were drafted with 4-6 answer choices with no option for unknown. Surveys were collected from exclusively new patient benign hematology visits from May 2013-July 2013. Patients were surveyed at outpatient appointments after a verbal consent was obtained prior to their first contact with a hematologist.

A total of 55 patients consented and received the questionnaire. Of the 55 questionnaires, 4 were incomplete and thus were excluded. 41.2% (21) responders were males, 58.8% (30) were females, 76.4% (39) were >40 yrs, 98% (50) were Caucasian, and 56.8% (29) had at least some college education or above. 60.7% (31) of patients surveyed stated that they were surprised when they found that their appointment was at the Cancer Center and 39.2% (20) stated that they received no explanation as to why they were referred to the cancer center prior to the visit. 70.5% (36) of patients did not know what benign hematology was and only 54.9% (28) patients knew that cancer doctors are also frequently trained to see benign hematology patients. 49% (25) of patients stated that their primary care physician's office did not explain that their referral to the cancer center was for a benign hematologic problem. 45% (23) and 41.1% (21) of patients expressed an increase in their anxiety and stress levels, respectively, when they found out their referral was to a Cancer Center. 27.4% (14) of patients said they were afraid they might have cancer during the process of referral and 37.3% (19) actually thought that the reason for their referral to the Cancer Center was an evaluation for cancer. Only 11.7% (6) patients expressed that they would prefer to be referred at a benign hematology clinic that is not located in a Cancer Center.

Referral to Cancer Center for benign hematologic diseases appears to increase stress and anxiety of patients and patients may perceive that they are referred for evaluation of a cancer diagnosis. Careful explanation by the entire team including referring physicians, hematologists, and office staff as to the reason for evaluation of a benign hematologic disorder may decrease stress and increase understanding of this subset of patients.

No relevant conflicts of interest to declare.