Online Case Database Gathers Clinical and Psychosocial Information for Multiple Myeloma Patients

DECEMBER 07, 2009
Christina T. Loguidice

New Orleans, LA There has been a paucity of information on the initial clinical treatment of patients with multiple myeloma and the psychosocial variables that affect their care in community-based practices. To address this issue, Neil Love, MD, Research to Practice, Miami, Florida, and colleagues developed a Web-based tool to rapidly gather reliable, multidimensional information on patients with newly diagnosed multiple myeloma. They presented findings from their online database in a poster session at the 51st  Annual American Society of Hematology Meeting.


The Online Case Database

The Web-based tool includes a 60-question online case questionnaire that gathers information on presenting symptoms, diagnostic workup, treatment, and the physician’s observations regarding several patient-related psychosocial variables. The researchers invited physicians who participated in Research to Practice CME initiatives to complete the online survey for individual multiple myeloma patients in exchange for a small honorarium for each submitted survey. All patient case data were anonymous. Only patients who received a diagnosis on or after January 1, 2008 could be included. From April 10 to April 27, contributions to the database were received from 41 US community-based medical oncologists, who added a cumulative 203 multiple myeloma cases.


Survey Findings

The survey yielded information on demographics, workup and diagnosis, and treatment and side effects. Most of the 203 patients included in the online database were between 60 and 69 years of age (median age, 67); 60% were men, 54% were retired, and 97% had health insurance. In 65% of cases, the oncologist thought the patient had “a great deal” of family support and 71% of patients were described as “calm and accepting” of their diagnosis. Although 80% of patients were considered “very” or “somewhat” proactive in obtaining medical information, only 64% were given a quantitative estimate of long-term survival and curability.

         When it came to diagnosis, 36% of patients had performance status 0 disease. The majority experienced multiple cancer symptoms, and, according to a baseline skeletal survey, 64% had osteolytic lesions. A startling finding was the inconsistent use of the International Staging System and cytogenetic analysis, resulting in incorrect staging for 54% of patients. In addition, the questionnaire demonstrated the following:

  • Only 11% of the 203 patients were enrolled in a clinical trial.
  • Oncologists found treatment for 15% of patients “somewhat” or “very” challenging and would have liked input on these cases.
  • Several first-line induction regimens were used, with 20% of patients receiving lenalidomide (Revlimid) plus low-dose dexamethasone (Decadron), and 18% receiving bortezomib (Velcade) plus dexamethasone.
  • The most common adverse effects included fatigue (47%); neutropenia (28%); thrombocytopenia (25%); peripheral neuropathy (24%); and nausea, vomiting, and diarrhea (13%).
  • Dose reductions varied between treatments, with 73% of patients who received a combination of melphalan (Alkeran), prednisone, and bortezomib requiring dose reductions compared with only 12% of patients taking lenalidomide plus high-dose dexamethasone. 


Survey Implications

Three clinical findings from the online survey suggest several knowledge gaps when it comes to treating multiple myeloma in the community setting: (1) heterogeneity in the selection of initial systemic therapy; (2) lack of collecting adequate prognostic data to ensure accurate staging; and (3) a low rate of clinical trial participation. Paired with the finding that almost 1 in 6 oncologists would have liked assistance making management decisions for their multiple myeloma patients, these data indicate the need for clinical support and education programs in the community setting.


Patients with multiple myeloma also need support, and Dr Love and colleagues noted that the psychosocial data obtained from the survey could be compared with similar information collected directly from patients to develop support programs. Addressing educational and patient needs in the multiple myeloma setting could improve the care of these patients. ASH Abstract 1408.


Disclosures: Research to Practice receives educational grants to develop CME activities from several commercial interests, including Amgen, Bristol-Myers Squibb Co, Celgene Corp, Millennium Pharmaceuticals Inc, Novartis Pharmaceuticals Corp, Ortho Biotech Products LP, and others.

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