Patient’s and Doctor’s Delay in the Diagnosis of Multiple Myeloma and Waldenströms Macroglobulinemia: The Results of An Inventarisation and Follow-up Study by the CKP the Dutch Advocacy Group for Patients in the Netherlands

Introduction. In 1998 the Dutch organisation for patients with Multiple Myeloma (MM) and Waldenstrom’s macroglobulinemia (WM) the CKP (Dutch Contact Group for patients with Multiple Myeloma and Waldenströms Macroglobulinemia), performed a study among their members to the time from first complains to diagnosis. This study was initiated after signals from the members that there was a substantial patients and doctor’s delay in the diagnostic procedures. As results of the outcome of this study the CKP took several initiatives to improve the awareness of these rare diseases among those active in the first line health care such as primary care physicians, physiotherapists, oncology nurses etc. Ten years later a similar questionnaire was send to the members in order to evaluate if there was an improvement in the time to diagnosis.

Methode: A questionnaire was send to all the patient members of the CKP in 1998. Thereafter the CKP made several information booklets for first line health care workers, for patients and was present with information booth at many symposia and meetings for the those people who might come in contact with MM and WM patients. Ten years later we repeated the same questionnaire in order to evaluate the results of these iniatives.

Results. It is estimated that based upon the prevalence the CKP did represented in 1998 about one third of the MM and WM patients of The Netherlands and in 2008 about 45%. The response to the questionnaire was n= 443 (79%) and n=580 (58%) respectively for 1998 and 2008. 60% vs 67% of the patients were 60 years or older. The diagnosis was made by the first physician or after one referral in 40% vs 31%. 19% vs 21% of the patients were at least 3 times referred to another health care worker.

The patient’s delay was less than 2 months in 75% vs 58% in 1998 and 2008 respectively.

For MM patients the other results were as follows: mean time from first complain to diagnosis in 1998 vs 2008 was 13 months vs 15 month. First visit to a physician to diagnosis was 10 month vs 11months.

In 47% vs 51% the diagnosis was made within 6 months whereas in 28% it took more than 1 year to do so in the two study years. Within one month 41% vs 38% were referred by the first (primary care) physician to a medical specialist

For WM the mean time from first disease signal to diagnosis was 19 months vs 24 months. First visit to physician and diagnosis 14 vs 13 months. In 42% vs 44% the diagnosis was made within 6 months whereas in 37% vs 38% it took more than 1 year to do so in the two study years. Within one month 18% vs 35% were referred by the first (primary care) physician to a medical specialist

Conclusions: Both in 1998 and 2008 the mean time from first complain to diagnosis was more than one year. The doctor’s delay did not improve in this decennium but there was a slight improvement of the patient’s delay. The way the CKP has organised its activities has not led to any improvement in the time needed to come to a diagnosis. We have to contact our sister organisations in other countries to compare these data and do more research how we must organise our activities to come to an improvement of the patient’s and doctor’s delay that is now unacceptable long in a substantial number of patients.