The Use of An Online Case Database to Obtain Clinical and Psychosocial Information Related to the Selection of and Experience with Initial Systemic Therapy for Multiple Myeloma.

Historically, available information on the clinical course of patients with cancer has been primarily derived from clinical trial reports, and population and hospital registries such as SEER and the American College of Surgeons. While these resources provide useful data on traditional clinical factors, presentation of the results can be delayed, the findings may not be reflective of community-based practice, and psychosocial variables are generally not included. To address these issues, we designed a web-based tool to gather multidimensional information in a rapid and reliable manner, which was pilot-tested in multiple myeloma (MM).

A 60-question case form was developed that requested information on presenting symptoms, diagnostic workup, treatment selection and the treating physician's perceptions and observations of a number of psychosocial variables. US community-based medical oncologists were recruited to enter anonymous case data on patients in their practices diagnosed with MM since January 1, 2008. Invited physicians had previously participated in CME programs developed by our group, and were provided modest, per-patient honoraria.

From April 10-27, 2009, 41 physicians entered a total of 203 MM cases in the data bank (minimum 2 cases, maximum 10, median 5). The median patient age was 67, 60% were men, 54% were retired, 97% had health insurance and 64% lived with a spouse or partner, most of whom accompanied the patient to office visits. In 64% of cases, physicians believed that patients had “a great deal” of family support. In 80%, the patient was considered “very or somewhat” proactive toward obtaining medical information, and in 64% the oncologist provided a quantitative estimate of long-term survival. Physicians considered 71% of patients “calm and accepting” of the diagnosis.

Only 36% of patients were PS 0, and multiple cancer-related symptoms were common. ISS staging and the use of cytogenetic analyses were inconsistent (Table 1). A variety of systemic regimens were initiated, and treatment resulted in “significant” or “major” toxicities in 21%. The most common side effects were fatigue (47%), neutropenia (28%), thrombocytopenia (25%) and peripheral neuropathy (24%). Bisphosphonates were administered to 77% of patients, mostly zoledronic acid (83%). Clinical trial participation was discussed in 34% of cases, and 22 people (11% of the total) enrolled in a study. In 15% of the cases the oncologist found management to be “somewhat” or “very” challenging and would have liked input on the case.

This web-based instrument allowed rapid and efficient collection of relevant information and provided a snapshot of newly diagnosed MM in community-based practice. Clinical findings revealed several potential “knowledge gaps,” represented by heterogeneity in the selection of initial systemic therapy and the lack of adequate staging and prognostic information, including cytogenetics. The psychosocial data obtained may be useful in planning MM support programs, and could be compared to similar information gathered directly from patients. Furthermore, in almost one in six cases, oncologists would have liked to have assistance in making management decisions. These initial findings document the need for related clinical support and education programs that use this information as a benchmark for improvement.

Lonial: Amgen, Inc: Consultancy; Bristol-Myers Squibb Co: Consultancy; Celgene Corp: Consultancy; Millennium Pharmaceuticals Inc: Consultancy; Novartis Pharmaceuticals Corp: Consultancy; Ortho Biotech Products LP: Consultancy.