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

Abstract

Background 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. Methods 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. Results 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. Conclusion 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. Disclosures: No relevant conflicts of interest to declare.

Patient and providers-level drivers of healthcare utilization related to a diagnosis of a precancerous condition: monoclonal gammopathy of undetermined significance (MGUS)

“…A previous study that investigated patients' knowledge and understanding of nonmalignant blood disorders found that patients may not fully understood the signi cance of such conditions. 31 In contrast, almost all patients in our study seemed to understand key aspect of MGUS, although a few patients recognized that they do not have a good understanding of the condition. We found that providers recognized that patients with MGUS could experience anxiety associated with MGUS diagnosis and longterm follow-up.…”

The Role of a Monoclonal Gammopathy of Undetermined Significance Diagnosis in Healthcare Utilization

“…Patients may experience high distress after a diagnosis of premalignant MGUS. [35][36][37] This associated anxiety could result in a change (overutilization/underutilization) in healthcare utilization and clinical surveillance beyond what is necessary. 38 Quantifying the care and surveillance of patients with MGUS is of clinical relevance given that multiple myeloma patients with a pre-existing MGUS diagnosis have been shown to have a better multiple myeloma prognosis.…”

“…22,53,38 Despite the relatively low risk of progression, patients with a diagnosis of MGUS are generally followed up every 6-12 months for signs of progression to malignancy. [35][36][37] It is not currently possible to predict which patients with MGUS are more likely to progress to multiple myeloma. 54 Elevated monoclonal (M)-protein concentration, 38 immunoglobulin M or A isotype, 38 abnormal bone marrow plasma cells 55,56 and abnormal free light chain ratios are risk factors for progression of MGUS to multiple myeloma.…”

“…24,45,52 Patients with MGUS progress to multiple myeloma at a rate of approximately 1% annually, 22,38,53 yet despite the relatively low risk of progression, patients with MGUS are regularly followed up for signs of progression every 6-12 months. [35][36][37] There are no screening programs available for MGUS detection, primarily due to a lack of treatment for MGUS and the relatively low probability of subsequent development of multiple myeloma. 22,53,38 Understandably, patients may experience high levels of stress after a diagnosis of MGUS, [35][36][37] which could result in changes in healthcare services utilization.…”

Multi‐trajectory models of serum biomarkers among patients with monoclonal gammopathy of undetermined significance

“…Patients with MGUS progress to MM at a rate of approximately 1% annually 15‐17 . Despite the relatively low risk of progression, patients with a diagnosis of MGUS are generally followed with testing every 6–12 months for signs of progression to malignancy 18‐20 …”