Last modified: 05 February 2010

International Survey on Myeloma Treatment Compliance

Summary of survey results

The survey was conducted between March and October 2009. In all, 278 healthcare professionals from 61 countries (70% from European countries) and 235 myeloma patients, patient relatives and caregivers from 13 countries of treatment (96% from European countries) have participated in the survey.

Healthcare professionals were subdivided into 196 physicians (39% haematologists, 27% medical oncologists, 5% haematologists-oncologists, 6% radiation oncologists, 3% surgical oncologists) and 276 nurses (27%). Patient views were represented by 180 myeloma patients (77%) and 53 myeloma patient relatives and 2 caregivers (23%).

The survey was made possible through an unrestricted grant from Celgene International.

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

   The majority of physicians and nurses stated they had been treating/caring for myeloma patients for more than 5 years. About half of the myeloma patients and more than three-quarters of the myeloma patients represented by their relatives or caregivers had been receiving myeloma treatment for less than 1 year up to three years, and about half of the myeloma patients and one-fifth of myeloma patients represented by their relatives or caregivers had been receiving myeloma treatment for more than 4 years.

2. New and ongoing myeloma patients seen in one week and current phase of myeloma treatment

   The majority of physicians and nurses stated that they see 1-5 new and 1-5 ongoing myeloma patients per week on average. About half of the myeloma patients and almost one-quarter of the myeloma patients represented by their relatives or caregivers were either in remission or on maintenance treatment. About one-fifth of myeloma patients and one-third of the myeloma patients represented by their relatives or caregivers were receiving initial treatment, and close to one-third of myeloma patients and 41% of the myeloma patients represented by their relatives or caregivers had a relapse or resistant myeloma.

3. Myeloma treatments used/received

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

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

4. Determination of myeloma treatment plans

   The majority of physicians, nurses, myeloma patients and patient relatives and caregivers stated that the myeloma treatment plan is usually determined together by the doctor and the patient, following a good discussion. However, about one-fifth of each group of participants stated that the doctor had to determine the treatment plan because the patient expected or asked her/him to do so, and more than one in ten physicians, nurses, and myeloma patients and close to one in five patient relatives and caregivers stated that the doctor determined the treatment plan and the patients had to accept it without discussion.

• 5.1 Patient ability to describe treatment plan in chronological order

  Almost three-quarters of myeloma patients and more than half of the patient relatives and caregivers “strongly agreed” that myeloma patients can describe their respective treatment plan in chronological order. However, only about one in four physicians and one in five nurses shared this opinion.

• 5.2 Patient ability to list medications

  More than 80% of myeloma patients and about two-thirds of the patient relatives and caregivers “strongly agreed” that myeloma patients can list their medications, whereas only one in five physicians and nurses shared this point of view.

• 5.3 Patient knowledge of purpose of each medication

  About one-fifth of physicians and one-sixth of nurses “strongly agreed” that myeloma patients know the purpose of each of their medications, whereas almost three-quarters of patients and about half of the patient relatives and caregivers were of this opinion.

• 5.4 Patient knowledge about how and when to take/administer medications

  More than three-quarters of myeloma patients and almost two-thirds of patient relatives and caregivers “strongly agreed” that myeloma patients know how and when to take/administer their medications, an opinion shared by about one-third of physicians and nurses.

• 5.5 Patient knowledge about the potential side effects of medications

  The lowest values of reported patient familiarity with myeloma treatment plans were seen in response to this question. About one on five myeloma patients and close to one-quarter of patient relatives and caregivers said that they are either “not sure” if, or “tend to disagree” or “strongly disagree” that myeloma patients know about the potential side effects of each of their medications, a point of view that is shared by about one in six physicians and almost one-third of the nurses who have answered this question.

6. Satisfaction concerning the level of information given to myeloma patients regarding the importance of correctly following their treatment plan

   About one in five physicians, about one in six nurses and almost one in four patient relatives and caregivers were “not really satisfied” or “not satisfied at all” with the level of information given to myeloma patients regarding the importance of correctly following their respective treatment plan. Interestingly, the level of dissatisfaction was the lowest among myeloma patients themselves where only about one in twelve complained about this issue. Reasons for being “not really satisfied” or “not satisfied at all included lack of time of the doctor, lack of information and education, cultural issues, frequent changes of doctors, lack of responsiveness, clarity, and empathy, difficulties understanding instructions, and the need for verbal or written guidance

7. Factors having a negative effect on myeloma treatment compliance

   All groups participating in this survey agreed that lack of instructions from the doctor or nurse is the factor having the most negative effect on myeloma treatment compliance. The second-most negative factor regarding treatment compliance according to physicians is the cost of drugs, followed by unclear treatment purpose. According to the nurses, the factor that has the second-most negative effect on a myeloma patient’s correctly following of the treatment plan is a poor rapport with the doctor or nurse, followed by failure of the treatment to show effect.

   Similar to the nurses, myeloma patients stated that a poor rapport with the doctor or nurse is the factor having the second-most negative effect on myeloma treatment compliance, followed by treatment side effects and lack of monitoring from the doctor or nurse. For the patient relatives and caregivers, the lack of psycho-social/emotional support was the second-most negative factor regarding myeloma treatment compliance, followed by lack of monitoring from the doctor or nurse and unclear treatment purpose.

8. Effects of Peripheral Neuropathy on myeloma treatment compliance

   According to the physicians who responded to this question, coping with myeloma is the area that is most affected by Peripheral Neuropathy, whereas nurses, patients and patient relatives and caregivers agreed that carrying on with daily activities is the area most affected by Peripheral Neuropathy.

9. Overall myeloma treatment compliance

   A large majority of myeloma patients, patient relatives and caregivers said that overall myeloma patient treatment compliance was either 90% or 100%, while the majority of the nurses stated that the overall treatment compliance was mainly between 80% and 100%,. The majority of physicians saw the overall myeloma treatment compliance somewhere between 70% and 90%. Examples for non-compliance included treatment side effect-related issues, cost/insurance-related issues, patient age-related issues, patient forgetfulness-related issues, issues related to lack of psycho-social support, (frequent) changes of the treatment plan, and to lack of information.

 
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