Baseline demographic and clinical characteristics of the MM patients
The main demographic, socio-economic, and clinical features of the patients are listed in Table 1. Our cohort included 742 patients, of which 90% were from Zhejiang Province; 44% were female, 56% were male, and the proportions of male and female in the TR group and non-TR groups were similar (P>0.05); and 70% were older than 55 years (Table 1 and Figure 1A). More than 70% had been working in agriculture or were unemployed, retired, or working as freelancers. Compared to the non-TR group, the TR group had more employees in enterprises and institutions (34% vs 18%, P<0.01) and slightly more retirees (24% vs 22%, P>0.05), but fewer agricultural workers (18% vs 34%, P<0.01) (Figure 1B). The proportion of patients in the TR group who had bachelor degree or above was larger than that in the non-TR group (14% vs 6%, P<0.01), although the junior high school was the highest level of education among 75% of all the patients in this study (Figure 1C). Most patients (87%) lived with their spouses, of which 39% lived also with children (Figure 1D). Almost all patients (99%) had children,and 94% of their children were adults and 87% of their children had jobs. Moreover, 57% of patients’ children had a bachelor’s degree or above (68% in TR group vs 52% in the non-TR group, P<0.01). (Figure 1E).
The socioeconomic status of the patients is shown in Supplementary table 1. The annual income of 58% patients was less than 100,000 RMB; that of 32% patients was 100,000-300,000 RMB. Seventy one percent of patients in the non-TR group had an annual income <100,000 RMB whereas only 45% in the TR group had such low income (P<0.01). Almost all patients were medical insurance covered but the out-of-pocket payments were still significant. Most patients (73%) spent more than 100,000 RMB out-of-pocket money for treatment. Twenty-seven percent of patients had 50,000-100,000 RMB and 21% of patients had 110-150,000 RMB direct out-of-pocket cost in the first year. Patients in the TR groups paid more than those in the non-TR group. For the total cost, e.g., the largest subgroup of patients in the TR group was in between 310,000 and 500,000 RMB (22%), whereas that in the non-TR group was in between 50,000 and 100,000 RMB (23%). The direct out-of-pocket cost after the first recurrence exceeded 150,000 RMB in 32% of the patients in the TR group whereas this occurred only in 20% in the non-TR group.
The main symptoms and the consultation departments that initially enrolled patients with MM are listed in Supplementary table 2. The patients' initial symptoms were mainly bone pain (46%) and elevated serum or urine protein (13%). Orthopedics (36%) and hematology (27%) were the most common departments for the patients' first visits (Figure 2).
Communication between doctors and patients
Before treatment, more than 70% of patients were told by their doctors that 1) patients with MM need long-term treatment, 2) MM is a malignant tumor with abnormal proliferation of plasma cells in the bone marrow, 3) MM is currently an incurable disease and will relapse in almost all patients after treatment. Fifty-seven percent of patients were receiving chemotherapy at the time of survey, while the patients under maintenance treatment and waiting for treatment accounted for 18%. Bortezomib (71%) and dexamethasone (63%) were the most commonly used therapeutic drugs (Figure 3A).
ASCT, due to associated intensive chemotherapy that can maximally reduce tumor cells, can also prolong survival and improve prognosis. 73% of patients were recommended for ASCT by their doctors. One of the main points that doctors communicated to their patients was that ASCT is a preferred treatment option for patients with good physical status, i.e., patients are younger than 65 years old or older than 65 years but in good physical condition, and may prolong survival and improve prognosis (Figure 3B).
Reasons for choosing or not choosing ASCT and the main concerns of patients
Thirty-eight percent of patients who were diagnosed within one year accepted ASCT. "Believe that autologous transplantation has a better curative effect, delays disease recurrence, improves quality of life, and prolongs survival (90%)" and "Trust the autologous transplant program provided by the doctor and actively cooperate with the treatment" (87%) were the most common reasons for opting for ASCT. Physical condition (73%), side effects (65%), the risk of recurrence (64%), and family burden (48%) were the main reasons for patients to reject ASCT (Figure 4).
Disease relapse and maintenance treatment
As shown in Figure 5, 18% of the total patients relapsed, lower in the TR group than in the non-TR group (14% versus 19%, P>0.05), and 69% of them relapsed once (65% in the TR group and 71% in the non-TR group, P>0.05). Fifty-seven percent of patients received maintenance treatment (64% in the TR group and 54% in the non-TR group, P<0.05), and more than half (56%) of them received lenalidomide (59% in the TR group and 55% in the non-TR group, P>0.05) (Figure 5A-5C).
Information acquisition channels of patients
Forty percent of patients obtained information from other sources in addition to that provided by their doctors and a higher percentage of patients did so in TR group than in non-TR group (52% vs 35%, P<0.01). “Search for information online” and “communication between patients” were the most common information acquisition channels. Compared with the non-TR group, the TR group more favored professional channels such as the hospital websites and other medical professional websites other than Baidu website (Supplementary Figure 1).
Among the forms of continuing education, face-to-face communication with doctors was the most preferred channel for patients (89% for all the patients; 90% for the TR group and 89% for the non-TR group, P>0.05), followed by listening to other patients about their treatment experience (44% for all the patients; 42% for the TR group and 45% for the non-TR group, P>0.05), searching internet for on-line lectures (21% for all the patients, 30% for the TR group and 17% for the non-TR group, P<0.01), communicating via social media WeChat (20% for all the patients; 27% for the TR group and 17% for the non-TR group, P<0.01).