International Survey – Detecting Myeloma

This survey was designed to obtain more information from physicians and patients about the path patients take to myeloma diagnosis, what medical professionals from different non-haematological and non-oncological medical specialties do to detect myeloma, how much time passes from initial consultation until the myeloma is detected, and what should be done to avoid delays in myeloma diagnosis. Survey results will be used to help encourage patient and medical communities as well as political decision-makers to focus greater attention on the issue of myeloma detection.

• To see the corresponding press release, click here (27 KB PDF*)
• To download a full copy of the survey results, click here (200 KB PDF*)
• To download a copy of the scientific EHA 2010 poster, click here (120 KB PDF*)
• To see the corresponding scientific EHA 2010 abstract, click here (14 KB PDF*)

Summary of survey results

The survey was conducted between June and December 2009. In all, 303 physicians from 56 countries (91% from European countries) and 349 myeloma patients and patient relatives from 37 countries of treatment (90.3% from European countries) have participated in the survey.

Physicians were subdivided into 90 general practitioners and family doctors (30%) and 206 orthopaedic surgeons and traumatologists (68%). Patient views were represented by 239 myeloma patients (69%) and 110 myeloma patient relatives (31%).

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

• Question 1 for physicians: Years in practice

  The majority of general practitioners and family doctors and orthopaedic surgeons and traumatologists stated that they had been practicing in their respective medical specialty for more than 5 years.

• Question 1 for myeloma patients/patient relatives: First symptoms

  The most frequent symptom experienced before consulting a doctor was back pain, followed by tiredness/weakness, bone pain, recurrent infections, shortness of breath, and bone fractures.

• Question 2 for physicians: Myeloma-related symptoms usually treated by medical specialty

  Of the general practitioners and family doctors who have answered this question, about 9 in 10 said that they usually treat back pain, and more than one in two said that symptoms such as tiredness/weakness, bone pain, recurrent infections and shortness of breath are also treated by their medical specialty. More than one-quarter of the general practitioners and family doctors answered that they usually also treat bone fractures.

  More than two-thirds of orthopaedic surgeons and traumatologists who have responded to this question stated that they usually treat back pain, bone pain and bone fractures. Symptoms such as tiredness/weakness, recurrent infections or shortness of breath, however, are not among those usually treated by this medical specialty.

• Question 2 for myeloma patients/patient relatives: First healthcare professional consulted

  Because of the symptoms experienced before consulting a doctor, the majority of the myeloma patients and patient relatives who responded to this question stated that the first doctor seen was the general practitioner/family doctor. Only in about 1 in 20 cases, the first doctor consulted was an orthopaedic surgeon, and also haematologists are usually not the first medical specialists seen when patients are confronted with myeloma-related symptoms.

• Question 3 for physicians: Routine testing when confronted with myeloma symptoms

  When confronted with myeloma-related symptoms, more than 9 in 10 general practitioners/family doctors who have answered this question stated that they would normally do a blood test, and more than two-thirds of them said that they would do an x-ray of bones or a urine test. More than 9 in 10 orthopaedic surgeons and traumatologists who responded to this question stated that they would x-ray the bones, 3 out of 4 would do a blood test, and about one in two would do either a MRI scan or a CT scan.

• Question 3 for myeloma patients/patient relatives: First referral

  When asked to which healthcare professionals they (their family members) were referred after the initial consultation, less than half of the myeloma patients and less than one-quarter of the patient relatives who responded to this question said that they/their family members were referred to a haematologist.

  The second most frequently mentioned medical specialist in this context was the oncologist, followed by the orthopaedic surgeon, the general practitioner/family doctor and the rheumatologist. About 1 in 20 myeloma patients and 1 in 7 myeloma patients represented by their relatives stated that they had no referral at all following the initial consultation.

• Question 4 for physicians: Familiarity with multiple myeloma

  When asked about how familiar they felt they were with multiple myeloma, the majority of general practitioners/family doctors and orthopaedic surgeons and traumatologists who responded to this question stated that they were “not very familiar” or “not familiar at all” with this disease.

  The survey also revealed that orthopaedic surgeons and traumatologists are more familiar with multiple myeloma than general practitioners/family doctors: About half of the orthopaedic surgeons and traumatologists but only about one-third of the general practitioners/family doctors said that they were either “quite familiar” or “very familiar” with multiple myeloma.

• Question 4 for myeloma patients/patient relatives: Treatments before myeloma detection

  About half of the myeloma patients and one-quarter of the patients represented by their relatives who responded to this question said that they received no medical or other treatment following the initial consultation, and before the myeloma was detected. On the other hand, close to half of the myeloma patients and close to two-thirds of the patients represented by their relatives replied that they received treatment for one or more symptoms.

  According to the myeloma patients and patient relatives who also stated the treatments they (their family members) received following the initial consultation, the most frequent treatment was treatment for pain, followed by physiotherapy/chiropractor/osteopath treatment, orthopaedic interventions, anti-infection treatment and anti-inflammatory treatment.

• Question 5 for physicians: Symptoms associated with multiple myeloma

  For the general practitioners/family doctors and orthopaedic surgeons and traumatologists who answered this question, the symptom that they associated with multiple myeloma the most was bone pain, followed by back pain, bone fractures and tiredness/ weakness. Generally speaking, general practitioners/family doctors associate more symptoms with multiple myeloma than orthopaedic surgeons and traumatologists do.

• Question 5 for myeloma patients/patient relatives: Specialty of doctor who detected myeloma

  When asked about the specialty of the doctor who detected their myeloma, about half of the myeloma patients and of the patients represented by their relatives who have answered this question said that their myeloma was detected by a haematologist. In about one in ten cases, it was a general practitioner/family doctor or an oncologist who detected the myeloma, and only in about 1 in 20 cases was the myeloma detected by an orthopaedic surgeon.

• Question 6 for physicians: Experience detecting myeloma

  The majority of general practitioners/family doctors and orthopaedic surgeons and traumatologists who responded to this question stated that they have rarely or never detected multiple myeloma in one of their patients. However, about one in five general practitioners/family doctors and one in three orthopaedic surgeons and traumatologists stated that they have detected myeloma from time to time.

• Question 6 for myeloma patients/patient relatives: Methods used to detect myeloma

  According to the myeloma patients and the patients represented by their relatives who have responded to this question, the most frequently used methods to detect myeloma are bone marrow biopsy and blood testing, followed by x-ray of bones, urine testing, MRI scan and CT scan.

• Question 7 for physicians: Difficulty detecting myeloma because of ‘unclear symptoms’

  The majority of general practitioners/family doctors and orthopaedic surgeons and traumatologists who answered this question agreed that ‘unclear symptoms’ make it difficult to do appropriate diagnostic tests in order to detect multiple myeloma. More than one-third of both groups “fully agreed” and about half of the respondents “tended to agree” with this observation.

• Question 7 for myeloma patients/patient relatives: Number of doctors until myeloma detection

  Of the myeloma patients who answered this question, about three-quarters stated that they had seen 1-3 doctors before their myeloma was detected but almost one in four patients had to see 4 doctors or more before the cause of their symptoms was identified.

  According to the myeloma patient relatives who responded to this question, only about two-thirds of patients had to see 1-3 doctors before their myeloma was detected and more than one-third stated that it took 4 doctors or more to identify the cause of the symptoms.

• Question 8 for physicians: Experience with referrals to myeloma specialist

  Almost two-thirds of the general practitioners/family doctors and about half of the orthopaedic surgeons and traumatologists who responded to this question stated that they have “rarely” or “never” referred one or more of their patients to a multiple myeloma specialist.

  However, more than one in three general practitioners/family doctors and more than one in two orthopaedic surgeons and traumatologists responded that they have “frequently” or “from time to time” referred one or more of their patients to a myeloma specialist.

• Question 8 for myeloma patients/patient relatives: Time from initial consultation to myeloma detection

  According to the answers given by myeloma patients and patient relatives, it took less than 1 week until the myeloma was detected in about one in ten cases, following the initial consultation. In about one in three cases (according to myeloma patients) and in about one in eight cases (according to patient relatives), it took 1-4 weeks to detect the myeloma.

  According to more than one in four myeloma patients and patient relatives, it took 1-4 months before the myeloma was detected, and in about one in eight cases (according to myeloma patients) and more than one in four cases (according to patient relatives), the myeloma was not detected until 5-12 months after the initial consultation.

  In about one in ten cases (according to myeloma patients) and in about one in seven cases (according to patient relatives), detecting the myeloma took 13 to 24 months, and in about one in twelve cases it took even more than 2 years until the myeloma was finally detected.

  In total, according to myeloma patients, the myeloma was detected within 4 months in about two-thirds of patients. However, according to patient relatives, the duration of 4 months for detecting myeloma applied to only about half of the myeloma patients.

  According to the myeloma patients who responded to this question, the average time that passed from initial consultation until the myeloma was finally detected was more than 164 days or about 5.5 months. According to the patient relatives who answered this question, the average time it took to detect the myeloma was more than 236 days or close to 8 months. When combining the answers given by myeloma patients and patient relatives, the average time for detecting multiple myeloma is more than 187 days or slightly more than 6 months.

• Question 9 for physicians: Readiness to check for myeloma before start of treatment

  When asked about their readiness to check for myeloma (do a blood test, for example) when seeing a patient presenting with one or more of the aforementioned symptoms, the majority of the general practitioners/family doctors and the orthopaedic surgeons and traumatologists who answered this question stated that they “would fully agree” or “tend to agree” to check for myeloma before considering treatment.

  Of the general practitioners/family doctors and orthopaedic surgeons and traumatologists who “tended to disagree” or “fully disagreed” with this approach, only very few explained why they did not agree. Their reasons included statements such as: “Only in certain age group and if pain does not go away”; “These complaints are too frequent”; “Because all of them are very common symptoms”; “First try to treat, if no answer, [then we] should think [of] the other disease”; “Because it is not so frequent”; “These are symptoms which go together with so many other diseases.”

• Question 9 for myeloma patients/patient relatives / Question 10 for physicians: Steps to be taken to avoid delays in myeloma diagnosis

  The myeloma patients and patient relatives who answered this question agreed that the most important step to be taken in order to avoid delays in myeloma diagnosis is to provide better information for medical professionals, followed by better education of medical professionals and better collaboration across medical disciplines.

  The majority of the general practitioners/family doctors and the orthopaedic surgeons and traumatologists who responded to this question agreed that better information for medical professionals is the most important step that should be taken in order to avoid delays in multiple myeloma diagnosis), followed by better education of medical professionals.

  According to general practitioners/family doctors who participated in the survey, the third-most important step to avoid delays in myeloma diagnosis is to improve doctor-patient communication, whereas orthopaedic surgeons and traumatologists felt that better collaboration across medical disciplines was the next important step to help speed up myeloma diagnosis.

 
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