Last modified: 05 February 2010

International Survey on Myeloma Treatment Side Effects and Unmet Patient Needs

Summary of survey results

The survey was conducted between February and July 2009. In all, 314 healthcare professionals from 43 countries (76% from European countries) and 260 myeloma patients, patient relatives and caregivers from 21 countries of treatment (96% from European countries) have participated in the survey.

Healthcare professionals were subdivided into 241 physicians (70% haematologists, 5% medical oncologists, 3% haematologists-oncologists) and 68 nurses (22%). Patient views were represented by 173 myeloma patients from 17 countries of treatment (67%) and 85 myeloma patient relatives and 2 caregivers (33%).

The survey was made possible through an unrestricted grant from Ortho Biotech, Biopharmaceutical Division of Janssen-Cilag.

1. Years of practice treating/caring for myeloma patients and years of myeloma treatment

   More than three-quarters of physicians and two-thirds of nurses stated that they had been treating/caring for myeloma patients for more than 5 years. About half of the myeloma patients and more than two-thirds of the myeloma patients represented by their relatives or caregivers stated they had been receiving myeloma treatment for less than 1 year up to 3 years, and about half of myeloma patients and close to one-third of myeloma patients represented by their relatives or caregivers answered that they had been receiving myeloma treatment for more than 4 years.

2. Average number of myeloma patients seen in one week and current phase of myeloma treatment

   About two-thirds of physicians and more than half of the nurses stated that they see 1-10 myeloma patients per week on average. More than half of the myeloma patients and close to half of the myeloma patients represented by their relatives or caregivers stated they were either in remission or on maintenance treatment. About one-fifth of myeloma patients and one-quarter of the myeloma patients represented by their relatives or caregivers stated they were receiving initial treatment, and more than one-quarter of myeloma patients and close to one-third of the myeloma patients represented by their relatives or caregivers stated they had a relapse or resistant myeloma.

3. Myeloma treatments used/received

   According to physicians, the most frequent myeloma treatment option used was chemotherapy, followed by Bortezomib and bisphosphonates, steroids, and Thalidomide. According to nurses, the most frequent myeloma treatment option used was autologous transplant, followed by chemotherapy, Bortezomib and Thalidomide, steroids and high-dose chemotherapy.

   According to myeloma patients, the most frequent myeloma treatment option received was chemotherapy, followed by autologous transplant, high-dose chemotherapy, bisphosphonates, and Thalidomide. According to myeloma patient relatives and caregivers, the most frequent myeloma treatment option received by the patients they were representing in this survey was chemotherapy, followed by Thalidomide, steroids, autologous transplant, and high-dose chemotherapy.

4. Level of information of myeloma patients about potential treatment side effects

   The majority of physicians and nurses stated that they felt their patients were well informed about potential side effects of myeloma treatment options, but almost one in four myeloma patients and more than one-quarter of patient relatives and caregivers said that the patients they represented in this survey were not appropriately informed about potential side effects of myeloma treatment options by their doctor.

5. Myeloma treatment side effects and their impact on a patient’s overall well-being

   According to physicians and nurses, neuropathy has the most negative impact on a myeloma patient’s overall well-being, whereas patients and patient relatives and caregivers stated that fatigue/malaise/ weakness/dizziness/somnolence/sedation/insomnia was the treatment side effect with the most negative impact on a patient’s overall well-being. This is also the most frequently experienced treatment side effect, according to patients, patient relatives and caregivers.

6. Satisfaction with doctor/patient management of myeloma treatment side effects

   More than two-thirds of physicians and more than three-quarters of nurses were “very satisfied” or “quite satisfied” with the way myeloma patients manage the side effects they have experienced, and around two-thirds of patients and patient relatives and caregivers were “very satisfied” or “quite satisfied” with how their side effects were managed by the doctor.

   However, about one-third of the physicians and about one in six nurses were “not really satisfied” or “not satisfied at all” with how myeloma patients manage the side effects they have experienced, and about one-third of patients and more than one-third of the patient relatives and caregivers stated that they were “not really satisfied” or “not satisfied at all” with how the doctor has managed any side effects experienced during myeloma treatment.

   Reasons for not being (really) satisfied with the management of side effects by the patient or the doctor included difficulties in treating side effects and myeloma, lack of information, lack of time, continuity, responsiveness, interest and competence

7. Effect of treatment-related side effects on myeloma treatment

   While about three-quarters of physicians and nurses stated that it was often necessary to modify dosing because of treatment-related side effects, only about one in five patients and patient relatives and caregivers shared this point of view. The majority of myeloma patients, patient relatives and caregivers said that treatment-related side effects had no effect at all on their respective course of treatment, while about one in six patients, patient relatives and caregivers and about one in ten physicians and nurses stated that myeloma treatment had to be stopped because of treatment-related side effects.

8. Treatment side effects not or rarely reported

   According to physicians and nurses, the most frequent treatment-related side effects that myeloma patients don’t feel comfortable reporting to their doctor include sexual problems, neurological problems and anxiety/depression. According to myeloma patients, sexual problems constitute the most frequent treatment-related side effect that they don’t feel comfortable reporting to their doctor, followed by diarrhea/constipation/gastro-intestinal problems and psychological problems. Patient relatives and caregivers also added jaw problems and tiredness/fatigue to the list of treatment-related side effects that patients don’t feel comfortable reporting to their doctor.

   All groups of participants agreed that embarrassment/shyness constitutes the main reason for not reporting treatment-related side effects. The assumption that patients might not report side effects out of fear that their treatment might have to be interrupted as a result was not confirmed by the answers given by myeloma patients.

• 9.1 Management of treatment side effects

  Almost half of the physicians, three-quarters of the nurses, half of the patients and about one-third of patient relatives and caregivers were “very satisfied” or “fairly well satisfied” with the management of treatment side effects, whereas one in seven physicians, more than one in five patients and one-third of patient relatives and caregivers were either “not too satisfied” or “not satisfied at all” with how myeloma treatment side effects are generally managed.

• 9.2 Patient access to information and support

  Almost half of the physicians, more than two-thirds of the nurses, half of the patients and about one-fifth of patient relatives and caregivers were “very satisfied” or “fairly well satisfied” with patient access to information and support, but about one in five physicians, one-third of patients and almost half of the patient relatives and caregivers were either “not too satisfied” or “not satisfied at all” regarding the access of the myeloma patients information and support

• 9.3 Access to novel treatments

  While only about one in ten nurses was “not too satisfied” with access to novel treatments, more than one-fifth of physicians, more than one-quarter of patients and almost half of the patient relatives and caregivers responded that they were either “not too satisfied” or “not satisfied at all” with access to novel treatments. However, about one-quarter of physicians, nurses and myeloma patients said that they were “very satisfied” with access to novel treatments.

• 9.4 Coverage of treatment costs

  While almost two-thirds of myeloma patients and close to half of patient relatives and caregivers stated that they were “very satisfied” or “fairly well satisfied” concerning the coverage of myeloma treatment costs, more than one-third of the physicians, one-fifth of the nurses and about one-quarter of the patient relatives and caregivers said that they were “not too satisfied” or “not satisfied at all” with the coverage of treatment costs

• 9.5 Overall quality of treatment and care

  Almost half of physicians, more than two-thirds of nurses and patients, and almost half of the patient relatives and caregivers stated that they were “very satisfied” or “fairly well satisfied” with the overall quality of treatment and care provided for myeloma patients.

• 9.6 Psycho-social support offered

  More than one-third of the physicians, almost one-quarter of the nurses, almost half of the patients, and more than half of the patient relatives and caregivers said that they were either “not too satisfied” or “not satisfied at all” with the psycho-social support offered. Nurses were the only group where more than half stated that they were “very satisfied” or “fairly well satisfied” with this kind of support.

• 9.7 Emotional support offered

  In contrast to more than half of the nurses who stated that they were “very satisfied” or “fairly well satisfied” with the emotional support offered to people affected by myeloma, more than one-third of the physicians, almost half of the patients and more than half of the patient relatives and caregivers were “not too satisfied” or “not satisfied at all” with the emotional support offered.

 
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