International survey on barriers to myeloma diagnosis, treatment, and care

Summary of survey results

In all, 163 individuals from 42 countries have participated in this survey, which was conducted between May and October 2006. 49% of participants were male, 51% female; 85% came from Europe. 26% of participants were patients or patient relatives (from 10 countries; 93% from Europe); 58% physicians (77% of whom were haematologists; 82% from Europe); 7% representatives from cancer support and advocacy organizations; 6% representatives from the pharmaceutical industry; and 3% others.

1. Overall standards of diagnosis, treatment and care for patients with multiple myeloma

   The majority of survey participants rated the standards of myeloma diagnosis, treatment and care in their countries very high or above average. About one in ten participants said those standards were below average or very poor in their respective countries.

2. Professional group usually diagnosing multiple myeloma

   More than two-thirds of survey participants stated that multiple myeloma is usually diagnosed by haematologists in their countries. While more than three-quarters of physicians shared this point of view, it was confirmed by only half of the patients and relatives participating in the survey.

3. Barriers to myeloma diagnosis

   Overall, survey participants agreed that unclear symptoms constitute the greatest barrier to myeloma diagnosis in their countries, followed by lack of symptoms and working together across medical disciplines.

4. Most important steps to be taken to overcome barriers to myeloma diagnosis

   Survey participants found education and information of healthcare professionals (including General Practitioners) to be the most important step to be taken to overcome existing barriers to the diagnosis of multiple myeloma in their respective countries.

5. Barriers to myeloma treatment and care

   Advanced disease stage due to late diagnosis and the slow drug approval process constitute the two greatest barriers to myeloma treatment and care, according to the participants of this survey.

6. Most important steps to be taken to overcome barriers to myeloma treatment and care

   The majority of physicians participating in the survey stated that the most important step towards overcoming barriers to myeloma treatment and care in their countries is tackling cost, money or reimbursement issues, followed by faster drug approval/availability of, and access to, treatment options and conducting more and better research and clinical trials. Almost one in five patients and relatives claimed that the first step to be taken should be more education and information of healthcare professionals (incl. General Practitioners), followed by tackling cost, money or reimbursement issues, and providing more education and information for patients and caregivers.